It seems, I'm a Medical Mystery | Multiple Sclerosis | Chronic Illness
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- čas přidán 20. 12. 2018
- On Wednesday 19th Dec, I had a call from my MS nurse. She explained that my consultant specifically wanted her to call me to explain the results of my recent Full Spinal MRI and where we go from here.
Hi Teresa and Neil. I have had the same experience as you over the past 27 years. It is unsettling to go from one diagnosis to another. I have had 3 lumbar punctures with no complications. My lp did show activity consistent with MS, but my MRIs have never revealed any active lesions. Like you, I do not have brain lesions. My doctors have conditionally called my disease MS, but . . .
I would encourage you to have the lp. You might get more answers.
Thanks Jane, that's reassuring to hear that you've had no complications with the LP. Thank you for writing and letting me know this. I'm going to go ahead with the LP, as I don't think they're going to treat me otherwise. But having said that, I want to know what the test shows as well.
Sorry for your confusing mess! I'd like to briefly share my experiences. I have had two spinal taps! I tried my best to just relax and follow their instructions. It's important to curl up as tight as possible on your side and hold that position. It opens up the space where the needle goes. After that, there was an hour or so where I just laid still before I could leave. Then, if I remember correctly, I had to keep as horizontal as possible for the remainder of the day at home. I even laid down flat in the back seat of the car on the way home. Both times I had ZERO headaches or any other side effects. I believe keeping flat is the key. Good luck Neil and Merry Christmas to both of you!
Yep. I was up too soon after my LP, the nurses said I was okay to be up and going. I ended up in the ER with the spinal headache within a day or 2, worst headache I have ever experienced.
Thank you for letting me know how your LP experience went, certainly good advice which I will definitely be taking also. I do intend to lie down as much as possible giving the needle site as much chance to heal as quickly as possible. I hope you had a good Christmas, best wishes for 2019.
That's awful Laura, doesn't it just go to show how little those nurses knew about the LP procedure. Did the headache not even subside when you were laying down then?
@@NeilBradleyMS it sucked, the procedure itself was a breeze, but the headache.. at the point I got to, I couldn't even lie down, or sit. I was blacking out in the ER waiting on triage.
That’s just horrible Laura, I bet you were petrified. I bet it was a relief when it finally started to disappear. How did they help you get rid of the headache?
God bless mate,from NZ. i had all that in December 2000,in March I got told the news 30 mounts of injections of Betaferon 1 b . I stopped it and ten years liter end up in wheelchair,not taking any medicine accept some pain pills for pain.Nine year's ago my daughter at 33 started to walk wobbly,got optical neuritis ,give up her legal work this year,relies on mum for help.Mom helps with her daughter and rest.My son 42 has no sign.
Keep strong,repair around house and bless the good women to stick by you.Your story is familiar on this site....
Sorry to hear you are going through this, I can imagine how frustrating it must be. My thoughts continue to be with you.
Thanks Gwenny, its very frustrating.. I'm just looking forward to getting it over and done with. I hope you had a good Christmas, and best wishes for new year.
Oh Neil,you can do it. I have had several and it's uncomfortable but that's about it. It is so incredible how fascinating our bodies are it is crazy!!! You all have our support,just seeing these updated vlogs!! Don't look it up or watch it,have your own experience I say. Adieu,Belated Merry Christmas!
Hello Neil! Same with me . Exactly. Clear MRIs every time. That being said, my neuroligist said there is microscopic damage to my spinal cord. I ,like you also have back problems. My neurosurgeon said that in his experience patients with MS or damage to the nervous system experience more pain and weakness moreso than a "normal" patient. I've found that yoga and exercise works well for the weakness but unfortunately the buzzing tingling and other neurological deficits always remain ... and for me they also rotate . Good luck to you and keep us all posted ! I am in the same boat as you! The "SS Wobbly" ha ha. Merry christmas to you and your family. All the best for 2019.
Hi Jon, definitely the SS Wobbly for sure.. I'm on that boat too!! :) Good to hear I'm not on my own, I think it could be a very similar thing with me with regard to microscopic damage and this is why nothing is appearing on my scans. I also do a certain Yoga exercise to help strengthen my core muscles, I'm not sure that it helps but I keep up with it daily. I hope you had a good Christmas, and best wishes for 2019.
It’s great to see another chronic illness warrior on CZcams. Have a great Christmas guys
Thanks very much, appreciate that.. I'm just currently watching your latest video and I've also subbed to your channel.
Neil Bradley thank you i appreciate it !! I’ve subbed too
Bradley, I’m really shocked to hear this, I honestly don’t know what to say. If it’s not MS off course that’s fantastic but the not knowing must be soo frustrating!! Iv had the lumber puncture and yes I was terrified however the only thing I felt was the anaesthetic, the actual procedure for myself personally was a breeze. I did not expect it to like that, I was expecting the horror stories I heard about. I watched the procedure prior to the actual event and it done me no favours, only made my anxiety worse! My partner was aloud to come in when I was having the procedure, so hopefully Teresa can too. If I was ever to have another one, it wouldn’t worry me. Keep us updated. Merry Xmas guys 😊
Hi Adele, and thank you for your message. You have said exactly what my MS nurse said also and that is the local anaesthetic hurts the most. That didn’t really worry me, it’s the needle into my spine that makes me nervous. However your message goes a long way to putting my mind at rest and I thank you for letting me know your experience. 👍🙏
That’s great news! GOD is good. I understand how your feeling, my daughter too was recently told she was misdiagnosed with MS after several years. We still don’t know what she has, she has been in a wheelchair for 16 months and now they don’t know what she has. So we’re waiting for further testing. She Did have a spinal tap several years ago. I remember her saying she didn’t want to go through it again and she had to lie still for a whole day afterwards. I continue to keep you in my prayers. Let go and let GOD. Have a wonderful Christmas and New Year. Love your Christmas spirit, T, and your hat. Lots of love to you both. 💜
Hi Maria, that’s just terrible about your daughter .. I wonder what she is suffering with if it’s not MS. Merry Christmas and best wishes for 2019.
Wonderful news on your brain scan 🤗 I hope you both have a God Blessed Christmas 🎄🤗
Thank you, Merry Christmas to you also and best wishes for 2019.
Hey There, Friends!
No worries, Bro. I had a Spinal Tap procedure a handful of months back and it wasn’t near as big of a deal as I thought it would be. Hopefully they can get you in very soon so you will be able to find the answers that you need.
The best advice I can give is more about AFTER the lumbar puncture. Be extra careful to completely and absolutely relax for two or three days after... no straining... no coughing or anything like that if it can be avoided. I had the spinal headache from Hades... trust and believe, you don’t want any part of that, my friend!!!
Praying for you two this Christmas season. Prayers of blessings of healing and hope to your household.
Soli Deo Gloria!!!
Chaplain Kenny and Carolyn Pecher
Hello there! And thank you for your very reassuring message regarding Spinal Tap. Yes I’ve heard about the headache and having to lie down and take it easy for several hours. I’ll be doing that for sure, not cutting any corners and definitely want to recover as fast as possible. Still waiting for the appointment to come through, it is Christmas though so probably be new year now. Merry Christmas and best wishes for 2019.
I had images and a spinal tap at the time of my DX. It’s a breeze and I watched. I hate needles and pass out at the sight, it was just a breeze. You will bring in good hands mate. Keep us posted.
Hey!! Thank you so much for this, that's very reassuring especially as you say you hate needles. Needles don't really bother me, but it's a different story having one stuck through my vertebrae.. that's what really worries me. Hopefully I'll be making a video soon telling everybody what a "breeze" it all was :) Thanks again for your reassuring message, I really appreciate you writing - Neil.
As much as MRI's are brilliant, they don't always correlate with the level of your MS. You can have a clear-looking MRI but very obvious physical disease progression, and likewise you can have an MRI covered in lesions but no obvious physical evidence of it. It will be interesting to see what shows up in your spinal tap (I haven't had one carried out, so I can't give you my opinion on it.). I hope you and Mrs Bradley have a wonderful Christmas, and all the very best for 2019.
Thanks Laura, I hope you've had a good Christmas also.. ah so you've not had the infamous "tap" interesting.. back in 2013 I managed to avoid having it as well, not so much now though :( Yes, I think its just a case of the lesions are still there but faded, clearly my recent very poor mobility reflects this. Best wishes for 2019 - Neil.
Yeah, my Neuro didn't feel it was necessary for my diagnosis, as I had 2 separate scans with evidence of lesion progression in the latter... so I dodged a bullet there! I do hope it goes well for you, Neil. I'm sure they will do everything to make you as comfortable as possible. Wishing you and Teresa lots of love, luck and happiness for 2019. xx
Hi Neil and Theresa! Good to hear that your recent MRI was clear Neil... How amazing is that! 👍
Like you say though, it does give you new questions... i.e. What the heck is going on then?!
I'm like you, in that my brain lesion load is very low... I've only really had lesions in my neck area and a couple of minor areas in my brain.
I was diagnosed because of the lumbar puncture that I had, which was done quite early on... They didn't feel I had enough lesion activity to diagnose me based on MRI alone...
I can honestly tell you, that the lumbar puncture isn't painful at all (Well not in my experience anyway)... I will be honest and tell you that it's not the most pleasant sensation, but there's no pain involved....
I also found it pretty quick, so it's over with quite quickly.
All the best to you both and hope you have a wonderful Christmas!
(loving your accessories Theresa by the way... Really brightened up my evening)! ❤️🤩 God bless.... Sarah xxx
Hello Sarah, and thank you so much for you message which I’ve found very reassuring. That’s very interesting also that you didn’t have many lesions and so they also had to confirm the diagnosis with a Lumber Puncture (such a horrible name). I’m kind of in no mans lands now again, very much like when I was waiting for a diagnosis back in 2013. Merry Christmas Sarah, and a Happy new year to you.
While I knew I had MS long before my doctors officially diagnosed me, I had to go through every single test possible they could think of to get formally diagnosed. The lumbar puncture, which I was worried about too was not that bad, did not take that long, I didn't get any headache or anything as they said might be a side affect and I was out of the hospital that same day and they did find the bands in the end. Everything will be okay, and I wish you and your wife the best!
Thanks for that Jay, I really appreciate you writing and letting me know.. goes a long way to putting my mind at rest. Pleased it went well for you, even though it meant getting an MS diagnosis? I hope you had a good Christmas, best wishes for 2019 - Neil.
Hi Neil and Theresa! I’ve been watching your videos for a number of months now. I really appreciate them. I was diagnosed with MS in April of this year. I had both an MRI and lumbar puncture. This is actually the second lumbar puncture I’ve had. The first (in 2013) was because I had Viral Meningitis and was EXTREMELY ill. I was in serious pain and just having to roll up my spine in to the position they want was terrible. However, this second time was very different and it was not in an emergency setting. It was uncomfortable for sure but not nearly so bad as the first one.
However, I did end up with a spinal headache and had to get a patch done to stop the spinal fluid from leaking. The spinal headache was the worst thing by far!! But not everyone gets this and in fact, I didn’t have this happen with my first LP. Hopefully you will not have to deal with that!!
Also, each clinic will have different rules but I told them I was very nervous to be alone and they allowed my husband to stay in the room with me. So, it might be an option for you too! I really hope it goes well for you and you are able to get some answers.
Thank you for your message Amber, and I so pleased you’re enjoying the channel. I really appreciate you writing about your experience, I can well imagine how poorly you were with Meningitis.. WOW! I sincerely hope you made a full recovery? Yes I’m aware about the possible headache, but what worries me the most is the needle touching a nerve I think. I’ll just be glad when it’s all over. Have a lovely Christmas and new year.
Neil Bradley I certainly understand the worry. Do you know if they are doing the lumbar puncture with X Ray? They used that on mine and I felt much more comfortable knowing they could see where the needle was going.
Hi Amber, unfortunately not.. I asked if it would be done with a scanner etc and my MS nurse said not. So that worries me slightly.
I wish you the best of luck, I miss diagnosed with Fibromyalgia for years and only now are we learning it's something else. I feel frustrated because of all the waster time it feels like but hopeful that they will get everything fixed in the long run.
Hi there, thank you. I'm guessing your still in the process of being diagnosed then if they misdiagnosed you with Fibro. Do they think its MS now then? It took just over a year to diagnose me with MS, and now I feel its all back up in the air again being re-diagnosed.
All but one of my lesions disappeared on my December MRI. And just like that, I'm off medication, undiagnosed, and back in limbo. 🤷♀️ I'm giving it all I've got in the MS Gym and hoping for the best! good luck to you! ♥️ (My lp came back clear, but was told that doesn't rule out MS.)
Hi Rachael, I’m wondering if I’ll be in a similar boat to you soon. I’ve got to have an LP and I think if the results are clear they won’t treat me for MS.
The MS Gym is really great isn’t it, I too am pulling in exercises from there into my own routine. I’m really finding them helpful, and I also think they’re making a difference. The key is consistency, and to keep up with them. For me this is twice a day or more.
I’m really do understand that limbo feeling, and I’m really sorry to hear you feel like this too.
I’ve learned that scans can come back clear but you can still present clinically with symptoms of MS (like me). Also the opposite is true, scans can show lesions and new activity but clinically you present absolutely fine. If you’ve not already, check out Dr Aaron Boster .. he’s an MS specialist and I’ve learnt so much from his channel.
Take care - Neil.
Thank you so much for your thoughtful reply. Dr Boster is great and actually the doctor who undiagnosed me. I've found his channel to be very helpful as well.
It is fascinating how many people like ourselves have clear scans and many symptoms while others have the reverse. I think demyelinating diseases are yet little understood and hope that will change in the future.
I've subscribed and will be looking forward to hearing how you are. Best to you both.
Oh wow so Dr Boster is actually your Neuro! Do you have any clinical symptoms of MS then? I’m guessing you have considering your doing exercises with the MS Gym.
Thank you very much for your sub Rachel. Much appreciated. 🙏
@@NeilBradleyMS Yes, I have some symptoms that haven't gone since big relapse in 2011. It's been better than it might've been though. Thankful that I'm walking better since MS Gym. I've found that to be very helpful. Hoping for the best for you with LP and results!
Crazy!! As a fellow MSer, I hope you don't have MS! I also hope they can sort this for you.
I had an LP during my diagnosis, and it was no big deal. You will do fine!
Thanks Laura, I still think it is MS and I reckon it's just a case that the lesions which are causing all of my problems simply aren't showing up on the scans. My poor mobility clearly tells me there is something very wrong, and I'm very interested to know the results of the LP when I have it done. Thank you for letting me know your LP was no big deal, that's very re-assuring. I hope you've had a good Christmas, best wishes for 2019.
I was diagnosed in 2013 mainly by a lumber puncture. Had an MRI scan which they said the results were not typical of MS as my lesion looked more like thumb smudges..
I was really nervous regarding my LP. The doctors gave me 3 anaesthetics, each one a little deeper each time, they then took the fluid. You have to lie down flat for an hour after. Make sure that you lie down at home, drink plenty of fluids and have some painkillers to hand, as you may have an headache. Luckily I didn’t. Hope all goes well for you xx
Thank you for that Karen, a lot of people are saying the local anaesthetic is the worse part.
Hello Neil,I'm so sorry you stuck with a medical uncertainty.I had a lumbar puncture done ,and I always said it would be the one thing I would dread .I thought well I gotta go through with it so I know either way what's going on.I had mine done at stoke.i didn't have to wear a gown and my husband was allowed in .I had to lay on my side and curl up as best I could.That was hard cos my legs don't let me.It wasnt a problem anyway.My back got sprayed with cold stuff to stop infection.Then the nurse felt for space in spine and injected numbing stuff into area that was being treated.Neil this part for me was the most painful part because they go quite deep.Then he tried to insert whatever it is they use.He told me he knew I had disc degeneration because he struggled to find space for needle to go in.Now and then I felt sharp twinge in legs and thus was because they hit a nerve.After trying for around half hour they decided it was best if I sat up and leaned over to allow space to open up more.After more injection numbing they tried again and BINGO they got the spot and some fluid.Neil I was so glad my husband was there because I clenched his hand so hard it was turning purple.😂The nurse did say that if they couldn't do it I would have to go back and do it using scan to see where they going.i lay back down for ten minutes and was allowed to go.I found the cafe and a cup of tea later and a good cry cos the shock to the system was sky high.All that worry and no sleep .The worst part for me and most painful was the numbing part.my husband counted alot of injection marks.I also had bruising and alot of tenderness for a week or so.Go with a brave heart and strong mind.You can do it.Just hit the cafe after and get over the shock.I had a good cry cos the relief was immense .It's the waiting that gets you cos the mind is a sod for scaring the poo outta you.Enjoy Christmas and here's to a fab new year.god bless.sharon .xx
Dear Sharon, thank you for describing your experience with the dreaded Lumber Puncture. My MS nurse also re-iterated what you've just told me in as much its the local anaesthetic which can often be the most painful. I'm glad you were able to go in with your husband as just having him around would have been very reassuring for you. I'm pretty sure this won't be a problem having my wife in there with me, I just hope they get the right spot pretty quickly. My apologies for the late reply, it's been a very busy (and tiring) few days .. I hope you've had a great Christmas, best wishes for 2019.
Yep, time to get the spinal tap. I'm telling you, it really is no big deal. I don't tolerate pain well and I get panicky and anxious of the unknown, reading all this literature and expecting the worst. but I didn't have it under fluoroscopy. I had it the old-fashioned way where the doctor had to feel between my vertebrae is where to insert the needle. And honest to God, the only pain I felt was a slight burning from the anesthetic used to numb the area, but aside from that, I felt nothing when the spinal tap was being performed, except for maybe just a little pushing on my back. Feels like someone is pushing your back with their hand. No pain at all. If you can get it under x-ray, even better. They will be in and out in under a minute. Your best bet is a spinal tap. If that rules out MS, then you will be a mystery and have to search for other diagnosis. But, like I mentioned earlier, spinal fluid is also tested for numerous other diseases. Once you have that done, you'll make another video laughing about how you stressed out for nothing 😁
Hi Shadow, and thank you for your message and my apologies for the late reply. You really have helped put my mind at rest and I surely do hope they are in and out in around a minute. My MS Nurse also said quite often the worse pain is the stinging of the local anaesthetic, that doesn't really worry me. I've also had that same though about making a video saying "it was a breeze" lol - I certainly hope so. Thanks again - Neil.
My Neurologist told me, my worst and biggest lesion is actually healing, since 2013. Could it be yours healed as well? They will figure it out, and I sure hope soon, because I had a heck of a time, getting diagnosed. By the time I was, it was a relief, to know what was wrong with me. I had heard Myasthenia gravis, and other thoughts, but with over 20 lesions, and stuck in ICU, it was a relief. My prayers are over you, and Therisa. Merry Christmas and Happy New year's
Hi Andrea, I think that’s probably what’s happened.. the lesions have healed to the point they’re not appearing on the scans now. Clearly though, there has to be something still there because my lack of mobility reflects this.
@@NeilBradleyMS They will figure it out my friend.
Blessings my friend
I hope everything goes well with the lumbar puncture. Personally I did not like the lumbar puncture Well worth it I found out I had MS
Be safe and stay blessed 🤩
Thank you 🙏
Oh goodness Neil, I'm just catching up with your videos. What a shock that phone call must have been after living so long with the diagnosis. In a way its good news but now you are back in Limbo . Have you been assessed for 'Functional Neurological Disorder'? My GP was querying that as a possibility for me before I got my Optic Neuritis. Then the hospital did an mri and lumbar puncture and I have brain lesions and the OG bands in my spinal fluid and that was that, ms.
I hope you get some answers this year, its frustrating knowing something is wrong and the doctors can't find it...fingers crossed for you x
Hi Becky, I’ve not been assessed for FND but I have done some research on it. I do have a some of the symptoms but lack quite a few as well. It’s going to be interesting to see what the Professor thinks that is for sure. I feel I’m quite challenging.
I’ve never had brain lesions ever, but I was diagnosed in 2013 when they spotted lesions on my spinal cord. I note how you said you have OG band in your spinal fluid, well they said I should definitely have this by now after five or so years, but I haven’t. I’ve researched this and in 85% of people with MS these bands show up.
@@NeilBradleyMSFor everyone out there suffering from autoimmune disorders I have so much to say on the subject! It’s like a living hell especially when you take this test and wait for results and another test and wait and nothing shows up, you’re in perfect health! It’s not that you want something to show up but at the same time you have all these things going on in your body and you’re left in limbo!! It’s horrible and there has got to be answers somewhere! In my book there is nothing that works or no magic pill!! I read comments from people that have CFS and Fibromyalgia and it’s debilitating! My heart aches for them! My two daughters have MS and they keep going and working and trying to be as normal as possible because as bad as some days are for them if you can’t work and earn a living what is the alternative?? I have so much to add to this but for now I’m praying for everyone on here that they can get the help they need!!😔🙏
@@sherryblatt4459 Thank Sherry, for sharing that information. I'm terribly sorry to hear how you're suffering, and I'm so saddened to hear that both your daughters have MS. This is so terrible, I really hope you, and your daughters are coping with every day challenges. Sending thoughts and prayers to you all. 🙏
Life always throws us curve balls ..I think your looking really well Neil ...I love Teresa's crown 😁 ..merry Christmas both ..lovely genuine people
Thanks Grace, I hope you also have a good Christmas. Best wishes for the new year.
Once suspected I pushed for “The Tap”. My doc was surprised. There isn’t a test that says yes or no MS. Spinal tap rules out everything else. MS is only thing left. I wouldn’t have taken DMD. Too much risk not knowing. After he inserted needle in Spine I was very nervous. I started to panic cause I felt trapped. I told dr I’m done and about to pop a cork and started to lift up and the doc freaked. He pushed me back down. He and assistant calmed me down with a cool wet cloth and removed needle and it’s ok you can comeback. I thought and decided ok let’s do it. I wrapped my arms around the table and held on. He reinserted needle. They kept tilting the table so I held on harder. It took a bit cause it’s slow. Then it was done. Its scary but didn’t hurt anymore than a shot. I panicked within my own head. I was afraid of paralysis. Nurse showed how that wouldn’t happen. It is the only way to know for sure. Stay relaxed as possible! You can do this and it’ll give you an answer. Stay safe! Merry Christmas and Happy New Year!
Sheridan, I share the same fear as you.. paralysis! The pain of needles going in doesn’t bother me in the least. I hope you also have a lovely Christmas and new year. Best wishes.
Neil Bradley You can do this. Try not to overthink it. Merry Christmas and Happy New Year!
Hi Neil,, I've done it before and it went smoothly , it wasn't painful by anything like a sting of an IV needle, when the spinal liquid starting ti drip slowly there was a weird feeling in the back( I repeat not painful) that will sound weird but I kinda liked it :) , I mean its much easier than MRI scan itself , the only thing that scared me was the massive number of papers they wanted me to sign before. I hope you get soon, stay strong ! Saeed for Saudi Arabia.
Hi Saeed, thank you for writing and letting me know about your LP experience.. that's reassuring that it went well for you and that it wasn't painful just "weird". I guess with the paper work they are just covering themselves aren't they. Regards - Neil.
Hi Folks … talk about a mystery Christmas gift! I'm praying that traveling thru this mystery tunnel might bring you into a world that is MS-free and your problems are solvable and have been overlooked by a medical staff concerned more with connecting the dots rather than simpler solutions right in front of their faces. As Ad Potta in the comments sections noted, perhaps something like a spinal vertebrae misalignment or some such. Hopefully, the testing will point to another pathway that is a less rocky road with a quicker recovery. Love Teresa's holiday spirit dressup.
All the best for Christmas & the New Year.
Hi Zan, yes your absolutely right and wouldn't that be a nice thing - I wish. I hope you had a good Christmas, best wishes for 2019.
Hello both , Oh my god what a mystery hey?? Don’t get me wrong this is fantastic news that there’s no lesions , but equally I can imagine you’re quite perplexed and anxious about what is causing all your neurological issues.
I’ve had a lumber puncture back in 2006 , it was absolutely fine , it wasn’t painful at all and I didn’t experience any nasty headaches/side effects whatsoever. The doctors made me lie down on the bed afterwards because they said they wanted to minimise the risk of any headaches but I was absolutely fine . I had no issues. I totally understand you’re apprehensive about the procedure but like you say you’ve got to have it done to gain some clarification and some answers. The medical staff are trained in the procedure so I’m sure you’ll be fine.
I Hope you both have a great xmas , please try not to worry yourselves too much over this (easier said than done I know). If anything think on the bright side that there’s no lesions .
Take care love and hugs, Grace x
Hello Grace, and thank you very much for writing and letting me know how your LP went. It feels good to know that you, and a lot of other subscribers describe the procedure as quite straightforward. I will of course look forward to making another video AFTER it’s been done.
I think the lesions which were showing in my cervical and thoracic spine back in 2013 have healed a fair bit and hence faded on the recent scan. The damage however, I feel is done as my continued poor mobility reflects this. I hope you also have great Christmas. Best wishes for the new year.
Hi Neil and Theresa,
Jessica TM here again. My what a response here. I have to agree totally with Willo on here I may not have MS but there is a question if I do.
What I would like to say is 1) people are advising here on the OCB test that have had it for you to go ahead, BUT!!!! you have had a disc decompression if I am correct AND a dural tear that was surgically repaired that must be taken into account. So may I suggest you hold off OCB and get your GP to refer you back to your spinal surgeon or for you to contact your spinal surgeons secretary and get this discussed with him before you decide if you wish to go ahead?
Yes the OCB carries many other risks to without spinal issues to which is why they get you to sign it off. Also quite often but not always it is the lesser experienced that do OCB so if you go ahead insist on under radiology and someone that knows what the hell they are doing as there are many risks with this test not just your spinal issues and patients really need to read the small print and research it first. Medics are good at saying oh its only small risks etc, it is still risks regardless.
2) Have they ever mentioned primary progressive or progressive relapsing at any stage? you have never mentioned this which concerns me that they are barking completely up the wrong tree as usual go to my earlier thread yesterday. If they haven't grab the bull by the horns and ask them it is your body your MS, as their focus and experience is on relapsing and remitting or secondary progressive NOT the subtypes I mentioned.
3) With this much spinal damage/symptoms with your MS diagnosis, your nurse should be giving you a bladder ultrasound every 6 months with her to check for urinary retention due to spinal damage, something that a patient isn't even aware that is happening a lot of the time, my son has this and it needs close monitoring make sure you ask to have this done if you are not already, push push push for what you need under YOUR terms not the medics.
And yes this whole situation is an absolute nightmare for you and many others, my son and I are up the bloody wall here with the hospital and there incompetence. And yes they can be absolute bullies we have experienced it off 3 neuros towards both of us, disgusting behaviour who the hell are these people for gods sake ego maniacs that's what.
You were in my thoughts a lot in the dead of the night along with my son last night.
Sending you hugs and strength to try and fight this and all of you out there.
Jessica and Christopherxxx
Hi Jessica, yes what a response indeed.. I'm just wading my way through the comments and responding best I can, I'm very behind though as time has been short of the Christmas period.
I am very concerned about having the LP and quite rightly as you say my surgery and subsequent Dural Tear is a significant worry. However, I've recently looked back over my medical records and the decompression was at L5 / S1. Researching the LP procedure I've learned that this is performed below the level of L2 to avoid spinal cord injury (thank goodness) and between L3-4 or L4-5. So I feel I've got some room to manoeuver here as it were. There is of course also the worry of the Dural Tear so there will be a weakness at this location which I will also emphasise. I'm going to email my MS nurse and mention my concerns.
I'm a little reluctant on doing too much research with regard to this LP procedure because if I do, I know for a fact I will scare myself silly and I won't go through with it. From the research I have done, and also from the experiences reported by my subscribers, its considered to be a relatively common and safe procedure. This still doesn't stop me worrying about it. I have to say also, I'm confident that if I don't go through with it I will loose the MS diagnosis and they will not be able to treat me with Ocrevus, simply because this is a treatment for people with MS. Even as I type, this last 48 hours I've gone rapidly downhill and my walking and balance are significantly worse than as little as a week ago. I'm not in a good place right now.
At one point they did mention progressive relapsing yes, but since I've had three attacks in twelve months (and three lots of IV steroids) I think my status has gone back to RRMS which, I don't believe I am at all. I'm definitely ready for a long face to face conversation about this.
Thank you Jessica for writing and my apologies again for the late response.
I hope you've had a good Christmas, and best wishes for 2019.
Regards - Neil.
By the way, your wife may be able to be with you while you have the procedure. I had mine done at 34 years old, and even though I'm a grown woman, they allowed my mom to come with me and sat with my head in her lap while I leaned over for the doctor to perform the procedure. Sometimes it helps to have someone you love just to be with you for comfort. Oh, and, make sure you heed the warnings of others and as soon as you're done and you get home, lay low and flat for as much as you can for the next 24 hours. Just like one commenter said, sit somewhat up to eat and go to the bathroom, but as soon as you're done come back to bed and watch a little television. Drink a lot of caffeine. Unfortunately, acetaminophen and ibuprofen will not touch the headache that you're going to get. Those are muscular headaches. The headache is because it is draining spinal fluid from your brain that is normally used to cushion it in your skull. I'm not much of a Coke drinker, but I did try to keep caffeine in me. It was an uncomfortable headache, but it definitely wasn't the worst, and doesn't compare do the migraines that I get frequently. DO NOT LOOK IT UP ON CZcams! LOL. DO NOT READ ABOUT IT, DO NOT GOOGLE IT, DO NOT GO ON WEBMD, it will only freak you out. 😁
Hi Shadow, I am in fact going to look it up on CZcams BUT AFTER I've had the procedure done! :) Don't worry, I've already had this thought, if I researched the procedure too much before hand I'm pretty sure it will put me off doing it. This is a case of, my head is in the sand until I've had it done.. THEN I'll check it out. I'm actually having the LP done in the DayCase centre at my hospital, it's like an OutPatients area where people go and have all sorts of treatments etc. I go and have my Steroids treatments there as well, they're all really nice. Pretty sure my wife will be able to join me, I will ask anyway.
The thing is, up to 20% of people with MS test negative for 'O' bands in CSF, mine was negative and my current diagnosis is 'Demyelination'. Make sure they know your spinal problems and that they do it under x-ray - I have a wedge fracture of the spine (you may remember my comment on your previous vid) When done under flouroscopy my LP was painless and successful first time, just a little feeling of pressure - my experience was absolutely fine and I wouldn't hesitate to have it done again if required...
Thank you for your reassurance, I really appreciate you writing and letting me know. It sure does help put my mind at rest a fair bit. I do recall your comment, and I will be sure to let them know my back issues beforehand. I hope you have a good Christmas. Best wishes for new year.
I had a lumbar puncture in 2014. I had 3 O-Bands, but I also had matching O-Bands in my blood sample. I just had an appointment with an MS specialist. He is reviewing my MRI's since 2007. He feels I may have something else and not MS.
I had to lay flat for 24 hours. Every time I got up, I would get a headache. You will do fine, you have awesome support.
Thanks Brenda, if it’s not MS I’d be very interest to know what your DR thinks it is. 🤔
@@NeilBradleyMS I will update once he calls me.
Brenda Douglas Thank you Brenda, I’m very interested.
That's awesome... No lesions
My Dr's still aren't sure I have ms. I had the lp mine took an hour. My fluid was very slow. It was uncomfortable but tolerable. Good luck! Merry Christmas to you both!
Hi Stephanie, my apologies for the late response. Thank you for writing and letting me know about your LP experience. I'm glad you were able to tolerate it ok, even though it took so long.. hopefully for me it will be over in a flash. Wishful thinking though I reckon. I hope you've had good Christmas and, best wishes for 2019.
It's not bad at all. Really don't worry about it, it didn't even hurt
Thanks Steve, that’s very reassuring. Really appreciate you letting me know this.
Hi there, I’m going to hit on a few things because I’m kinda sorta in your situation, but I’ll start with my experience with the spinal tap. FOR ME...it was probably the worst experience ever! As others stated, they do give you a shot to numb the area where they will be inserting the needed and that part wasn’t bad at all but for me they went to close to the nerve or spinal cord and on both attempts it gave me a painful full-body jolt. It was like something I had never experienced before in my life and brought tears to my eyes, so needless to say I will never ever have that done to me again while being conscious. You will have to stay laying down after the procedure for several hours and that is to prevent you from having a massive headache afterwards. I pray that your experience is much better than mine, but it was able to confirm that I do have MS.
Now in regards to the lesions being gone after being seen on one MRI I’ve experienced that as well. The first MRI showed that I have one on my brain and two on my spine (cervical & thoracic). A year later and they couldn’t find the any on my spine but I have two additional lesions on my brain. I constantly suffer with neck pain that radiates into my left arm that causes numbness and tingling. At first I thought I was having a heart attack but after several emergency room visits and seeing a cardiologist my heart is healthy. I also suffer with a lot of pain in the middle part of my back. I tried to get an injection in the thoracic area as well and it wasn’t successful. I had the same problem as when they did the spinal tap so my new doctor has agreed to provide me with anesthesia medication so that I won’t feel a thing. I have some mild stenosis in those areas along with a bulging disk in the lumbar area. I feel like there is something going on in my thoracic area because I have a lot of chest discomfort and racing heart from time to time but the doctors are at a lost. My chiropractor thinks something maybe pressing on a nerve in that area but other doctors disagree but they don’t have an answer either...??? It’s a lot of info but I hope it helps. If you can think of anything regarding my problem I’m open to suggestions from anyone...thanks B
Thank for your honesty with regard to the LP procedure. That is precisely what I’m scared of, touching a nerve and maybe causing some damage. I’ve got enough problems and don’t need anymore. As you are no doubt aware from my video, the dilemma I’m faced with is not being treated unless I go through with the LP procedure. Thanks for the info regarding your other pain, it’s a mystery isn’t it. The Dr’s I suppose can only rely what’s telling them on the scans, and if everything looks normal it’s a conundrum isn’t it.
Have they ever done a functional MRI with your neck? I feel like that might be worth looking into
Hi Alison, never heard of a functional MRI so had to consult Dr s Google! And No, I’ve never had this done.
Wow my buddy !?!?!
I just had the spinal image done , from my base of the skull down about 11 1/2" they found 9 holes /lesions why im having those 4 LHermittes attack so far the last one while i was sleeping and laying flat. The last 3 i was bending way down from wheelchair to pick up what ever it was I dropped. Now back in 2001 i had the spinal taps done , a series of 4 because my last back fail was from a car accident when i was hit broadside from a 16 year old drunk driver at 52 miles an hr. , While I was at a stop. Then the insurance co. Wanted this test done to void out anything like M.S. back then. Not a fun process at all my friend . Im sure given the best time spent looking for the right Doctor who has the highest scores in doing this very delicate procedure you will fair great !
I'm almost elated you might not have this terrible disease but it has to be some kind of autoimmune disease of some kind and given that there are much worse ones than M.S.
I cant imagine what your going threw . I unfortunately I did NOT have a good experience with the spinal tap i had and im not going to tell you what happened to me and im NOT happy to habe to be the one with not good news . I feel like i need to say just be very cautious who does this prosedure for you. Good luck and please keep us informed. By the way i had those steroid injections and WOW! I was ready to build an addition on my house and and for the neighbors , seven build a rocket ship ! But not long lived and I'm back to having no energy at all ! I hate it , its been this way all summer. Same with heat i cant stand it i get so sick ! Yet after 20 years of severe lower back pain from 3 surgeries then the auto accident that shattered everything and then having a 4th that last one the pain never ended for me for 20 plus years , till about 6 months ago . Ever since my last LHermittes attack i noticed that my lower back pain has been lessening ! And now non exsistant !! But now my kneck pain is annoying the hell outta me !! Go figure !? So my level of M.S. according to my Doctor she said in her 30 years shes never seen some one with such severe M.S. attacks and so many issues happening at once . She told me that up to 4 attacks a year is considered severe and i was having that plus about 4 more up to 8 a year. But the Capaxone has really helped me , i do get attacks but for a day and months now apart instead of up to 6 weeks long and just as strong a degree from day one to day ending and then i wake its gone like it never happened. And most of the time i had pain associated with mine and lack of mobillity . So enough of me please keep going with the videos and keep us notified. Have a great Christmas and a happy New Year both of you kids 😄
Good to hear from you Glen, and thank you for letting me know about your LP experience even if it wasn't great.. I will be having the procedure done by a Doctor, I can only hope they've done it several times (I will ask). I'm very nervous about it, but several of my subscribers have said it really wasn't a problem and nothing to worry about. I wonder if they've improved the procedure somewhat since you had it done in 2001. Perhaps.
I'm really pleased to hear after having the steroid treatment you felt absolutely great! At least this gave you a break from all the horrible symptoms the MS has been throwing at you.
It's my opinion that although nothing is showing on my spinal scan, the lesions are still very much there because my poor mobility reflects this very well.
I'm pleased to hear that your lower back pain has subsided somewhat, I think this could be a delayed reaction to your steroid treatment. A very similar thing has happened to me, although now I'm in my fourth month since having steroids in September and I'm once again dipping considerably fast.
My MS is also very aggressive having had three attacks in 12 months (I note you also having had four) .. however isn't it strange that my scans don't reflect this. I still think I have MS.
Apologies for the late reply Glen, this video has attracted lots of comments which I'm slowly working through but its taking me a long time what with the busy Christmas period as well.
I hope you've had a great Christmas, and best wishes for 2019 - Neil.
Oh Neil this is like bitter/sweet news, I really hope they get to the bottom of it for you, I have lesions on my brain & spine so I didn't need the lumbar puncture but I know people who have & they said it's like an epidural needle which I have had, Teresa will know more about it cos it's usually with childbirth, but I totally understand why your dreading it, I think it's only natural to feel the way you do cos I know you've been dreading it for so long, Try not to let it ruin xmas for you, Teresa will be by your side as always 💜 I've heard you can take someone in with you too.
You will get through this, your tougher than you think 😎 Wishing you both a lovely xmas & Teresa you look lovely as always,
Best Wishes xxxxx🐱🐱🐱🐱🐱
Thanks Sue, yes I understand.. if something had shown up on my scans like it did in 2013 I wouldn't have to have the Lumber Puncture. The idea of having a needless put through my vertebrae kind of fills me with dread, but its going to be interesting if it comes back negative. What then? Have I suddenly then not got MS, what was my diagnosis all about in 2013 then I wonder? I really don't know Sue, I feel like I'm having to go through the diagnosis all over again and that took over a year last time!! A lot of my subscribers have written in putting my mind at rest saying the procedure isn't all that bad so I'm not actually dreading it. Having said that I know I'm going to be a nervous wreck on the day. How are you doing anyway, I've not heard from you for a while? xxxx
@@NeilBradleyMS
I've not been great, pain is getting worse and worse it has me in tears sometimes and I have a really high pain threshold but this is beyond a joke, they just keep piling me with more pills that dont work, I'm gonna speak to my nurse cos I drank Champagne and it deadened the pain for awhile better than the co codamol but I dont wanna be drinking cos I'm not really a drinker but will see what they say about it,
I know you will be ok going through this, your stronger than you realise, all hospital stuff is scary but sometimes ya wonder why you were so nervous cos it's just a scratch and abit of pressure ,I know afew people who've had this lumber puncture and they all said they were panicking for nothing so please try not to worry, stay strong and you have Teresa to make you laugh!
Goodluck hun speak to you soon xxxx
Thank you so much Sue, I really appreciate you telling me this with regard to the Lumber Puncture. I will definitely remember what you’ve said. Alcohol does numb the pain doesn’t it, I actually think it makes you feel differently about the pain rather than take it away. I also had a terrible night with pain, add in overactive bladder and the result is practically no sleep and currently very tired. Look after yourself, and I really hope your visit with your MS nurse of proactive. Take care. Xx
Hi guys. Wow, I'm amazed how similar your experience is with mine. Remember the tests I have in my list? The primary one is the spinal tab. I've had two epidurals due to two c-sections (after the second one my back was rigid for 3 days, I was in a bending position too and very painful) Yet, the spinal tab scares me more. I've been avoiding it since August...but I can't delay any longer. Mostly, because I am curious to see if Lyme Disease is also a factor. I always suspected I had LD since I was a teen. My parents didn't do anything about it because the symptoms were sporadic and flu like. I did have the bulls eye rash but they didn't know what it was and decided to let it clear on its own. (Which it did, but it doesn't mean LD left with it. We didn't know anything about LD back then)
The medical community says a spinal tab can be a tool to identify what's going on, including LD but, my Neurologist advised that it wasn't a sure test. That false negatives have ocurred. So, I'm in the same boat as you. Wondering if it's worth it or not. I was spoken to (and I also felt like) a medical mystery. Once officially diagnosed though, the meds and treatment for MS just doesn't convince me. I've felt like a guinea pig in more than one occassion. So, my faith and my hope relays in the Lord. He knows what to do and how to do it. I do what I can, but I know beyond a doubt that my life is in the best hands, His.
I am praying for you both. Don't loose hope. We can get thru this.
Hugs ♡♡
Dear Jayleen, thank you for writing and my apologies for the late reply. I found your message very interesting indeed, especially about the LD and how you actually had the Bullseye rash. Hmmm, so many people have written to me saying how do I know I've not got Lyme Disease but I suppose this is where we have to put faith in our medical profession to rule these things out. I'm actually very much looking forward to receiving the results of my LP (when I've had it done) because I really want to get to the bottom of what's wrong with me. Having said all that I've already had my MS diagnosis back in 2013, but now I feel I'm having to go through the diagnosis process all over again.
So, have you had your LP done yet?
Like you putting your life in the hands of your faith, I often feel very similar to this in as much I think to myself what will be will be. Just at the moment my mobility is taking a very big tumble especially over the last 48 hours and its very scary! But I also feel I can't move forward until I've had the LP procedure done.
I hope you've had a very nice Christmas, best wishes for 2019.
One one note id like to say its good to get a good result. However i feel your torment over the spinal tap. ive refused them for years until they diagnosied me via MRI. Having this hanging over you and not knowing what is causing it may be causing you more worry. Try not to worry as this does tend to flare up symptoms. I really do wish you all the best. xxx
Thanks Kim, yes it’s not nice hanging over me especially during this time of year. I’ve accepted that in order to move forwards I need to go through with it, I am nervous though.
You need to do the Spinal Tap. If you don't have MS then you need to know so you can start to work towards finding the issue. I had one when I first found the I had MS. To be sure we did blood work, MRI, and spinal tap all showing MS.
Hi Jessica, yes I know it’s something I have to do. I do however have an MS diagnosis which I was given back in 2013. I was diagnosed with imaging at the time, lesions in my cervical and thoracic spine. Also Uhthoff’s Phenomenon was very instrumental. Never had to have the “tap” as along with my Clinical diagnosis they felt they’d got enough pieces of the jigsaw for a definitive MS diagnosis (at the time). The spinal tap is but a small piece of the jigsaw, but as I’m no longer showing anything on the scan, this is why I’ve now got to go through with it before they treat me.
I have been through it. It is not as bad as some think it is. After you come home and you have to lay flat for 24 hours. Now you can sit up to eat and can go potty but you need to lay flat as much as possible. It does not hurt just some pressure.
I am seeing people that did theirs sitting up. don't know if it makes a difference but I had mine done laying on my tummy.
Thanks Jessica, that helps and is reassuring that it wasn’t too bad. 👍
Hello my good buddy I commented on one of your videos on CBD oil I also went through the lumbar puncture to get a full diagnosis of Ms on me 2 years ago don't be scared don't worry about it is a little bit of pain when the needle goes in but they mostly numb you but you will be fine takes about 15 minutes good luck and I wish you the best
Thanks William, appreciate that. 👍
Stay strong! Xo
Thanks Rebecca 🙏
I had one done a year ago. It was not the best experience but it wasn’t horrible. Here in the states they numb the area with shots. They use an X-ray to know exactly where to go with the needle. You have to lay in a weird position. It was over quick and they got me straight up off the table. The only side effect I had was soreness on my lower back for a few days. B
Thanks for that Patty, yes I was told by my MS nurse that often numbing the area with local anaesthetic is actually the most painful part of the procedure, that doesn’t worry me. I hope you’re doing ok. Merry Christmas and best wishes for 2019.
Neil, merry Christmas! I will be working. Yay! Lol.
Hi Neil, when was the last time your MRI showed any lesions either on the brain or spine, 2013? Have you changed anything in your lifestyle for them to heal? I'm very impressed, but also puzzled!
And how many lesions DID you have in both?
Hi Kelly, my first ever MRI scan was in 2012 when I first started having symptoms. I’d got a disc bulge and they thought this was causing all my problems. My spinal surgeon said he can fix the disc but my problems are there, as he pointed to a lit up area in my cervical spine on my MRI. Later on in 2013 another lesion showed up in my thoracic spine. It was later in 2013 along with Uhthoff’s phenomenon I was diagnosed with MS. I’ve not really made any radical changes to my life style really. Yes very puzzling.
Neil Bradley Ak ok. Thanks for the explanation. Is your walking fine now since the lesion(s) is gone?
Hi Kelly, I’m afraid not. In fact my walking has deteriorated quite considerably this last few days and I’m very worried. I’m finding it more and more difficult to get about now, and once again I can feel my quality of life slipping away. Good to hear from you again Kelly.
Neil Bradley I'm sorry to hear that, Neil! My walking is always worse after the holidays too for some reason - it's worse in the last few days as well since Christmas. I think it must be all the fatty and sugary Christmas treats/meals I've been eating. Could that be the same for you? Time for me to get back to my usual low saturated fat whole foods diet (it has helped greatly in the past). I'm wishing you all the best in the new year! 💕
Neil I had an LP and honestly I had no issue with it at all. They gave me a needle to numb that area then I sat on the side of the bed with my back curled sort of and they performed the procedure ... it took no time at all with no pain ... they said it is common to have an intense headache afterwords and gave me I believe Tylenol... and no headache at all. They showed me the fluid afterwards and it was clear. If it is cloudy could indicate an infection ... i don’t think you are going to have any problems with this procedure my friend .
Thanks Rodney, I really appreciate you letting me know this, helps to put my mind at rest. Merry Christmas and best wishes for 2019.
Hello there. My questions to the medical people would be along these lines: I wonder what happened to the lesions you had? I also wonder if another MRI from somewhere else is possible? Do some people have injections of dye so that the scans can be interpreted better as it makes it clearer? Can lesions disappear? I would want a second opinion. Please God they can offer this to you. Meanwhile you aren’t on your own !
Thank you Frances, I'm going to be asking lots of questions precisely along those lines. I had the contrast when they scanned my brain, and still nothing showed up (apart from my brain lol) .. but I've never had MS brain related symptoms, I've always been very spinal. They've never done a spinal scan with contrast (always without), I'm wondering if because it takes far too long - not sure. I understand about wanting a second opinion as the thought has also occurred to me, but this is the same hospital, same scanners etc that diagnosed me back in 2013 where the lesions were clearly visible (I saw them). In fact, I over heard the radiographers saying the MRI scanners have been updated recently, so their tech is very good. It's a tough one. If the Lumber Puncture comes back negative and they refuse me treatment, there's going to be hell to pay. I hope you had a good Christmas, best wishes for 2019.
Blimey what a dilemma! I suppose you have to have it done but how have your lesions just gone? How strange does that mean in theory your myelin has repaired? Yes it's very odd for you I must admit and very thought provoking for you. Try not to think to much on it and enjoy your Christmas 😉
Hi Adrian, I think it’s a case of my lesions have healed to the point the scans aren’t picking them up. Clearly there is still something there as my lack of mobility reflects this.
Wow, what a mindf*k excuse my language. I’ve heard of this before! Very happy for you if it’s not ms, but the thought of starting over looking for answers, we all know is horrible. I would bring the previous scans and the current ones to a highly reputable doctor even if you have to pay for it out of pocket.
Tell me about it Karen, feels like I’m waiting for my diagnosis all over again. Fed up of it all, now I’ve got an LP looming over the Christmas period.
Hello you two. This is a mystery Neil. Seeing your faces I wished the Nurse had not phoned until after the New Year, but I realise it has to be done. Our bodies don't stop (illness wise) for Christmas. One step at a time then, get this one over and done with and then push like mad if its clear.... I know Teresa will, bless her. Listen Neil, nothing to be done this week,, so I hope you can try and switch off and have a good day on Christmas Day, Teresa's excitement should help!! It's just bloody crazy MS can take years to show up. A bonus though Neil is you have a brain after all, was Teresa shocked 😂 I have to put a little bit of a light mood in as you two look so fed up. I hope you 2 have a really nice Christmas and here is to the New Year and onward and upward. Will be thinking of you both over the festive period. Take Care, Mark (P.S. to Teresa...... IT'S CHRISTMAS 😊 )
Thanks Mark, we've had a good Christmas on the whole.. I hope you have too. Yes, Teresa has to sit down to get over the shock of my brain showing up on the scans.. she just couldn't get over it :) Sooner this test is done and out of the way the better as far as I'm concerned. Best wishes for the new year.
Wow. So now you have zero lesions at all?? That´s so weird. No wonder you´re surprised. I am too. Where the heck did the spinal lesions go..?
As far as treatment is concerned, I must say that I think they´re doing the right thing. They cannot (and should not) treat something they haven´t diagnosed.
Clinical symptoms aren´t enough on their own, at least not here. They need to see lesions or a positive spinal tap along with the clinical symptoms to give the ms diagnosis.
When they first suspected that I might have ms back in 2009, I had a lot of clinical symptoms, some quite severe, but scans and spinal tap were clear, so they couldn´t diagnose me back then. But in 2016 I had both lesions, a negative spinal tap and a lot of clinical symptoms, which finally led to my diagnosis.
I was literally sitting here crossing my fingers that you agreed to have the spinal tap. And I am so glad to hear that you did! I completely understand that you feel very anxious about having one, and that´s also why I want you to know that I am so proud of you for doing it. You are doing it for YOU. Because you´re right - you need to know to move on.
You know I had a spinal tap when I was diagnosed (actually I have had two, because they did one in 2009 too).
Honestly I could have shit my pants the first time, because I was so nervous, but it was not bad at all. I am not going to call it pleasant either, but the thoughts of it were much worse than the actual procedure.
I know you are feeling unsure about it due to the disc issues in your back. When I had my second spinal tap in 2016, I had two herniated discs and a lot of pain in my lower back (same place as you). Just before the procedure, I asked the doctor if the needle was going to touch the discs, which made her bring out one of those flexible spine models, so she could show me exactly where she was going in and where my discs were located. And it is NOT the same area. That helped a lot to know.
For me, the only uncomfortable thing about the procedure was when she hit a few of the leg nerves. But it only lasts for one second, it´s not horrible (believe me, you have been through much worse) and it´s not dangerous at all.
Besides that I only remember one other uncomfortable thing. The spinal headache. I had that for an entire week in 2016. The nurse told me to just lie down for 10 minutes and then sent me home, which I do NOT recommend. In 2009 I was hospitalised, which meant I just layed in the hospital bed for hours afterwards and I had no headache at all back then. It´s very individual what people experience, but just lay down for a while and take it easy.
And remember that it only takes 15 minutes of your entire life. So even if it´s a bad experience it will be over very quickly. Did I tell you that I am proud of you? Yes I did, but you need to hear it again. You can do this!
Hi Rikke,
My MS nurse said the scans were completely clear, no lesions all all showing up. Naturally I’m absolutely thrilled about that but clearly there must be something still there that is just failing to show on the scan. My poor mobility which is now dipping once again clearly demonstrates this. I seem to have responded quite well to anti inflammatory medication (steroids) very well this time, perhaps that’s because of no active lesions🤔
Thank you for describing your experience, it really does help me knowing that it’s not actually “too” bad. Knowing that it should be over fairly quickly (all being well) helps also. Hopefully I won’t experience the leg twitches, that’s what really worries me I think, a needle going so close to nerves and the spinal cord.
Yes it makes completely sense that they aren’t able to treat me without a definitive MS Diagnosis.. and I get that I really do. I suppose the irritating thing is that it took over a year to get an MS diagnosis back in 2013 and now that’s all up in the air. In fact I feel like I’m waiting to be diagnosed again, effectively I am.
In order to move forward I don’t really have a choice. As another subscriber said, the only thing worse than a Spinal Tap is not having it and then having to deal with the uncertainty.
Thank you Rikke for being proud, that really does mean a lot. You’re right, I can do this and I’m going to. Your support, as always is greatly valued.
P.S. I agree with others comments here. Could you wait for a second opinion and avoid perhaps endangering your discs more?
I know it's difficult, the mind tends to scare us using logic as a weapon against us, but please try to enjoy this time you have while making a plan of action after the holidays. (Sometimes clinics are under-staffed and festive seasons tend to be more hectic than usual for them, making it more tedious and frustrating for us)
Always remember, this is your life, a wonderfully amazing and inspirational one. Please know we are all thinking of you, praying, sending you both our best wishes.
Hello again Jayleen, quite a few people have suggested I consider a second opinion and I've given this some thought. I feel the lesions on my spine are in fact still there, they have to be because my poor mobility reflects. They simply aren't appearing on the imaging now, which I suppose is a good thing as well. Also, an LP is considered a routine part of an MS diagnosis and I actually never had one, I managed to get away with it. Now, not so much though.. so I think when I've exhausted everything I can, then perhaps it will be time for a 2nd opinion. Thanks - Neil.
I'm guessing the scans aren't picking up the lesions anymore because your body must be somewhere with fixing the tissue. That and trying to see tissue inside the body is a huge asking of any machine. So I bet the scars are still there but no longer able to be seen by a scanner. Moreover, I had a lumbar puncture and mine went very smooth. And after I was done I had pretty much lie around for the day to avoid such things like a headache. I didn't get one and was back to my normal self quickly.
Very well stated. Remyelination does occur and can make former lesions undetectable.
Thanks Jared, that very reassuring. And yes, I suspect I have healed and the scanner isn’t picking it up. There must still be scarring though as clearly my mobility reflects this when I’m trying to walk. Overall though I’m very pleased with the scan results. I hope all is well with you.
Hi John, it would appear so .. pretty sure the lesions are still there unfortunately as my poor mobility still reflects this. Recent months have been better though. Overall very pleased with the scan results. Merry Christmas my friend, and best wishes for 2019.
@@NeilBradleyMS Things for me happen to go tryingly since I got MS. Thanks for the update about the scan showing you had a brain. Gave me a good laugh. Hope you and the mrs have a Merry Christmas and a Happy New Year!
Thanks Jared, I hope you had a really good Christmas also, best wishes for 2019. I have a brain 🧠 bonus! 😂
Could it be functional neurological disorder Neil?
I’ve never heard of this so just did a Google. Hmm very interesting.. I have to take in to account that I did in fact have an MS diagnosis back in 2013 derived from lesions showing up on scans. It will be interesting to see what the LP shows up.
@@NeilBradleyMS Good luck with the LP. I'm sure they will get to the bottom of it in the end.
Thanks Dee, appreciate your input.
Merry Christmas! Since you seem to do well while on steroid treatment, that acts as an anti-inflammatory, it might be worthwhile looking into Non-steroidal anti-inflammatory medication, since you can take them daily. There are prescription ones, stronger than Ibuprofen.
The only thing worse than a spinal tap is not having one and living with uncertainty?
Hi John, I tried this a while ago with a drug called Naproxen and didn’t notice any significant results. I can’t remember if I gave it enough time, I’m actually quite keen on doing this again. You’re right, I can’t live with the uncertainty.. it’s just something I’ve got to do.
@@NeilBradleyMS Meloxicam is a prescription strength NSAID that is taken once a day, not much side effect, helps me a bit.
Hi neil wade here a lumbar puncture wasn't as bad as i thought it would have been it's more like pressure they made me lay on my side and ball up so my back was curved and they numb it very well also they will make you lay down flat on your back afterwards for around thirty min i think
Thanks Wade, that reassuring and I appreciate you writing and letting me know this. I hope you had a good Christmas, best wishes for 2019.
@@NeilBradleyMS thanks I wish you and misses Bradley a happy New year as well hopefully 2019 will be a better year for all of us
I was a young mother of four when I had mine .i felt the pressure and the warm sensation in my lower half.i also had an angiogram of the upper half..I was unable to walk.got depressed obviously.was diagnosed with .M.E.years later.Dec 2017 I fractured bones in my right wrist..two yrs prior I had fell and fractured bones in my left.then fell headbutting the pavement.never been accident prone.my physio and fracture consultant picked up a tremor in my right side head etc.typical essential tremor..this has progressed to gross tremor and I'm on meds .i had m.r.i and dat scans this summer. i have resting and gross motion tremor .the scans showed nothing. all is clinical diagnosis.. without the evidence in front of you it does become a mysterious area. the lumbar really sounds worse than it is.i was worried at the time . Now a mother of five 17-41..a granny of three 12-19...wishing you both well...and go for it ✊
Hi there, thank you very much for your message.. so it would appear you're a bit of a medical mystery as well then! It certainly seems like you've been through the mill with all of your symptoms etc, are you still without a diagnosis then? I'm beginning to think that my clinical diagnosis is all they're going to have to go on soon, I've got a funny feeling my LP is also going to come back clear (my sort of luck). It's nice to see all this hasn't held you back though, sounds like you've got a lovely family there and no doubt your grandchildren keep you on your toes :) Take care.
@@NeilBradleyMS essential tremors really relies on the good old clinical diagnosis..I noticed several symptoms before I fractured the wrist.thats why I watched and subscribed in the first place .
It's been fun .four yrs of bad falls and broken bones.all part of it apparently..stay positive .and wish you both well 💕
@@NeilBradleyMS my oldest son is 41 he was paralysed in a car crash at 21, my second son 38 broke his neck in a bike crash at 23..he is mobile tho.sometimes in life some of us seem to get more bad luck than good 💕
Thank you .. and I'm so sorry to hear of the bad luck both of your son's have had. I'm still struggling to come to terms with loosing my mobility after being such a fit and athletic man all of my life (I'm 46). I can't imagine being paralysed and having all of that taken away in a blink of an eye. Good to hear your other son is still mobile after breaking his neck. You're absolutely right, some people do have all the bad luck when others seem to float through life without as much as a common cold. I suppose the only thing we can take away from this is experience isn't it. Wishing you and your family well also.
Hi Neil and Theresa. It’s very weird what’s happening. I did had a lumbar puncture for my diagnosis. I can tell you I didn’t feel a thing. No pain at all. The anestesia is local so you’ll be aware of everything. They will put you on your side like in fetal positions and insert a needle until they reach the spinal cord. Neil it won’t hurt a bit. I didn’t experiment any pain. Yes I have to tell you about the weird sensation when the needle reaches the spinal cord and enters there. I don’t know how to describe it. It is this strange weird feeling like “whoa that doesn’t belongs there get it out”. I’ll tell you again, no pain. Just that weird sensation I can’t explain. For the rest, it doesn’t take to long. They have to extract like 7ml of fluid if I remember well. The best thing is that the doctor or someone keeps talking to you to distract you from the procedure. I was left alone in that sense. Nobody was talking and my mind betrayed me and my pulse drop too low. If this happens the doctor will know because the fluid stops. So, he asked me “are you ok” I said, yes. Then hw ask me again “are you ok”. It was when I realized I wasn’t. My pulse drop so low the fluid stop completely. So, we have to stop the procedure until I recovered. It took me like half hour or so. I was very dizzy and weak. The doctor told “men we were doing so well. They fluid was coming out very fast. We were half way there”. After that we had to start again. This time I wasn’t lying down on my side. Instead he sat me on the border of the bed and was told to incline to the front and he proceeded to insert the needle on more time. So I had it done twice. Again didn’t feel pain at all. But this time the doctor kept on talking with me and everything went well. So I think that been distracted will they do the procedure will help a lot to take your mind off of what is really happening. Wish you the best and Merry Christmas! I have been a full year on Ocrevus and I’m doing great. Cheers!
Hi Anthony, thank you for describing your experience when having the spinal tap. It really helps to know that you and so many others say it’s not really any big deal and very little to no pain. Having to have it done twice in one session was unlucky! At least you got through it ok. Merry Christmas to you, and best wishes for 2018.
Hi Neil and Theresa,
It's Jessica here the lady with son with TM and MS.
I am so so sorry you are in this bloody state you poor things. I thought I would just verbalise a few things here by what my sons neurologist said and a few other bits as I feel that your MS team is maybe not up to scratch and like you we have problems here to.
You can have a completely clear brain and spinal MRI said by our neurologist and he said I was exactly right in my understanding of the different mechanisms in different types of MS, plus all that I have read from proper neurological sources etc. However even though your scans are normal you can still be showing clinical signs and history of symptoms, you can be in a shocking state even with those scans being normal, you can be falling all over the place, all sorts of stuff and even have a normal OCB test to.
If you think back to what I said previously where I said in the more rare progressive MS sub types "Primary progressive" which is mostly spinal, in that type of MS you have neurodegeneration (destruction) so no recovery in those areas with very little inflammation it just keeps getting worse, it is a very different beast to "RRMS".
RRMS is inflammatory driven and can hit the brain because it tends to cross the blood brain barrier, whereas PPMS stays more in the spine on the whole and less inflammation and doesn't cross the blood brain barrier as much. PPMS is pretty aggressive in the spine (sometimes with a couple of brain lesions) causing very bad leg/feet symptoms and debilitating fatigue etc due to those spinal lesions causing havoc on signals. Walking is massively effected with this type, my son is you are etc, pain you name it and men are worse with it. Progressive relapsing has that neurodegeneration destruction going on same as PPMS, but has an inflammatory mechanism to but not as much as RRMS I believe this one is very rare only 5% and PPMS 10%.
The damage can be so small that the MRI doesn't pick it up but you are still showing neurological deficits etc.
You had lesions like my son cervical and thoracic (my sons TM lesions were so subtle on his scans, but he did have some in his brain and eye to with the TM attack) it left him with massive impairments all over from the get go. When my sons MS hit 5 days after a 10 day stay with TM on discharge when he was scanned 2 months later he had massive MS lesions on top of those TM ones all in his spine and one in his cerebellum.
If you remember I said to you my sons had no change on his recent brain MRI and yet he was falling apart absolutely shocking stuff. So as far as I am concerned the scan was a complete waste of time and his neuro contradicted himself to so that was infuriorating.
Regarding you being clear on MRI now eg: those lesions are now not there in the cervical and thoracic area, well if they were inflammatory rather than neurodegeneration they can heal and disappear, your myelin has done a temporary weaker patch, the steroids bouts have helped healed that bit to some degree. BUT you are sliding again which to me screams neurodegeneration.
With regard to the lumbar puncture, you can get a false positive and a false negative. So you could have it but it is clear and you are still sliding with symptoms and they say oh what do we do.
I have a very important question for you Neil do you have bladder retention issues like my son and have you ever had and do you have a bladder scans with your MS nurse? If you do what has she said please.
There is a neurologist at the Walton centre NHS or at the spire hospital in Liverpool called DR Anu Jacob. He specialises in Transverse Myelitis Neuro Myelitis Optica and MS plus movement disorders. He is the best in the field a wonderful man. He is known for difficult cases where some neuros are saying you are fine or we don't know blah blah bloody blah when clearly you are not. He charges I think £225 expensive but maybe your family could ralley to try and get you to him as you simply cannot go on like this I feel so much for you both, or you get an NHS transfer which you are entitled to you need answers its getting ridiculous and so terribly distressing for you both.
You are well within your rights for a 2nd opinion through your GP push for another consultant or phone up the spire private hospital here or get referred to the Walton Centre. But only Dr Jacob as a lot of neuros here are a waste of space.
Also remember that 85% patients that present to neuros have the common RRMS which they know more about but still do not fully understand, the subtypes PPMS RPMS they know very little indeed the same with Transverse Myelitis don't have a bloody clue.
I to don't want you to have MS the same as I do not want my son to have it but you need to put your boxing gloves on both of you and fight this although it is utterly exhausting you deserve better care. I have spoken to quite a few people and it seems in the Uk and in other countries that quite often some of these medics just do not have a clue nor do they try to find out, DR Anu Jacob does if it is not typical or a rare symptom etc.
I am not a doctor I am going by what I have been told by neurologist and what I have read from proper sources, speaking to people etc but I think all knowledge is power particulary when coming up against this sort of thing. You MSERS need all the power you can get and if you are weak hopefully your loved ones will step in and advocate for you if you are lucky enough to have anyone as I know some people don't.
Bless you sending big hugs to you both, and thinking of you both. Take care and I hope you have as good a Xmas as you can given the circumstances.
Jessica xx
Hi Jessica,
Thank you for taking the time to write such a detailed response, and I'm sorry its taken me until now to reply to you.
I am very pleased that the scans have come back clear, but I'm under no illusions.. clearly there is something very wrong with me neurologically whether the scans show something or not. I've got quite a strong feeling that the results of the LP (which I've not had yet) will come back positive for inflammation. The reason I think this is because as a rule I usually respond quite well to IV Steroids which reduce inflammation. I do seem to have developed a bit of a trend though in as much I have the steroids, my general mobility improves a fair bit which lasts a couple of months, then I start to decline again. I'm declining now.
Even though I was put in the RRMS sub type, I have never believed that I am this .. I am very spinal and like you I've also done the research. I've always thought I was more fitting for the PPMS category with a few exceptions but when I've presented this to my Neuro she said absolutely not. They are meant to be the experts aren't they! (head in hands)
Interestingly you mention the damage can be so very small the scans don't pick anything up, I think this was definitely the case with my initial scan back in 2013 when I was diagnosed. My Neuro (at the time) went through them with me and the lesions between t4 and t6 were so very subtle, dark grey in colour I would have never spotted them but his keen eye did fortunately.
In answer to your question, yes and no .. a lot of the time I feel I can't empty my bladder and sometimes I can return in as little as five minutes to go again. Other times, I've feel I've emptied ok. I've not had a scan as I feel I manage this ok and don't raise it as an issue. Honestly though, it does worry me especially the urgency and inability to hold more than 200ml when I'm not sitting. More recent concerns over the last few weeks is poor flow, it's starting to take me a long time to empty. The bladder issues are very worrying for me and they make me miserable as I feel I have to stay around the house a lot now, I don't want to go places because of it.
Thanks for the info regarding the private Neuro, I'll give it some thought .. at the moment I feel I've got to continue through the motions of my current hospital. They've always been fairly good (not the best) I've felt, its good to have something else to fall back on to though. My GP is excellent so I can always mention to him if I feel I need a second opinon.
Thank you Jessica, and I hope you and your son have had a good Christmas.
Best regards - Neil.
Just what you didin't want, Neil! :(
Tell me about it Dean!!
My nephew had ms, he got back Wednesday from Russia cured of ms
I’m guessing your nephew has had stem cell replacement?
Neil Bradley yes and it works, just watched video of dr. Frenrenko. He has been performing stem cell since 2005 and completed 2000 ops
Neil Bradley put in terry playle, in CZcams he was on two sticks waiting for a wheel chair
Thanks Shaun, the only thing with the stem cell treatment is, and I understand how it works by effectively rebooting your immune system.. I’m pretty sure it can’t reverse existing damage. It will only prevent further future damage. Also it carries risks as well I think because they wipe out your immune system with chemo drugs, and I’m sure I read somewhere where this can possibly be fatal.
Maybe you haven’t had MS all alone. Would be a great thing! I pray they find out what’s going on!
Chance would be a fine thing.. having said that I feel MS is the closest thing that matches what’s been going on with me for the last 11.5 years, whether they prove it with tests or not.
Who's a good boy?
Lol 😂 absolutely, just as my wife would say🙈
Drink lots of Caffeine after the procedure!!! I've done two, and although its not pleasant by any means, it is do-able!!!
Thank you Cathlene.
had LP when I had initial MRI of head and spine. No problem . done by an anesthesiologist and quite simple. Neil what researchers at shepherd Institute in North Carolina have found is because of treatment lesions do disappear and then come back but in other areas of the body. but symptoms remain. Now the protocol is starting to change in treatment as drugs and newer drugs are developed treatment cannot be halted because symptoms still there and progression can continue. By stopping treatment they are taking steps backwards. So push the medical community . I know its hard because England is socialized medicine and they way the system works, money playing a key role, can hamper the event. so finding a progressive researcher, I know they exist there over the pond, he or she can push forward with treatment and not take a back set wondering why lesions disappear and things are changing. The drugs are getting better, thank GOD, so that helps with symptoms and the progression of the disease. But stopping in their tracks is a big set back. they need to continue on for your sake and scratch their heads at the same time. Check some of the research in England, Australia, and the United States because new finds are happening. Merry Christmas and New Year to you and Theresa. Talk soon.
Thanks for the information Bode, and its good to hear your LP went without a problem.. that's very reassuring. I hope you've had a good Christmas, best wishes for 2019.
We had a friend who was diagnosed with some thing called friedericksattackicia after twenty years they Said they wrongly diagnosed him😤😭
Oh my gosh, Frederick's Ataxia is a horrible disease. My coworker passed away in her 40s from it. I am hoping your friend went on to be diagnosed correctly.
Have seen him about, he wobbled around on sticks
WOW, WTF, Confusing as hell, Serious? 1) You had lesions show up on MRI scan in 2013. 2) You clearly have experienced MS "like" symptoms for years and years. 3) Your MS "like" symptoms have reacted positive with the usual MS treatments (IE, steroids etc.)
And now at this moment your Central Nervous System appears to be healthy and normal. But all the "usual" MS syptoms remain. I suppose there is a logical answer to this but...
Hope 2019 brings some light to your situation, hang in there with the Lumbar Puncture. Love you bro, Jim
Thanks Lee, I could seriously do with some light at the moment.
In Poland HSCT IS FREE to polish, but built with EU MONEYS
you dont have ms??
Hi Teresa, the chance would be a fine thing wouldn't it ! As nothing has shown up on my MRI scans I feel my diagnosis is a little up in the air. So now I need a Lumber Puncture to look for more evidence of inflammation in my Central Nervous System. Not looking forward to it at all, but a lot of subscribers have put my mind at rest by telling me the procedure isn't too bad. I've already had an MS diagnosis back in 2013 when lesions DID show up on my MRI imaging, now it feels like I'm having to go through obtaining the diagnosis all over again. Clearly there is something very wrong because my poor mobility reflects this.
Yes ; after going through every other drug - waste of time
Oh, i hate spinal tap... sorry, i will never do it again 7 day's of hell for me, but i know people who didn't have any of aftereffects of spinal tap, wish you luck
Hey there, thanks for the message. I was one of the lucky ones I think as it went very smoothly and I never got the headache. Sorry to hear you had a hard time with yours. I think it’s very dependent on how experienced the Dr is doing the procedure. I was lucky, my doc had been doing at least one tap a day for six months so he was very experienced at the procedure.
I wrote an Email for you!
Hi Britta, my apologies for the late reply.. I've slowly been working through comments over the Christmas period. Thank you for your email, I appreciate you writing. I hope you had a lovely Christmas and I hope you have a great new year. Regards - Neil.
On face book see policeman in wheel chair for ten years , now dancing. Once the baddies have been removed the body it starts to repair the damaged scar tissue, my nephew has scars in his neck and brain
Sounds good to me Shaun.
Put terry playle into you tube - CURED of MS IN RUSSIA- our medical specialists prefer pharmaceutical company tablets that don’t work ? Must be to do with money and who gets it