THE NMO IS PROGRESSING: This is where we are at. Methylprednisolone (Steroids), Depression.
Vložit
- čas přidán 28. 08. 2022
- I'm sorry Teresa and I haven't done a video in quite some time. Nevertheless, here we have a bit of an update for you. I'd be lying if I said things were good, there not.. but we still try to keep smiling in the face of adversity.
----- Please consider joining us -----
▶︎ SUBSCRIBE - czcams.com/users/spookyna...
👀 WATCH NEXT 👀
▶︎ My VERY FIRST Symptoms - • Multiple Sclerosis - M...
▶︎ My MULTIPLE SCLEROSIS Diagnosis in 2013 - • Multiple Sclerosis - T...
▶︎ The VERDICT, MS or NMOSD - • The Letter | The Verdi...
▶︎ My SHOCKING Consultant Visit - • NEIL'S SHOCKING CONSUL...
▶︎ This is what happened to me after IV STEROIDS - • WHAT HAPPENS WHEN YOU ...
▶︎ BEFORE and AFTER IV Steroids - • CHRONIC ILLNESS DAY IN...
▶︎ Never thought I'd be WALKING like this again!! - • NEVER THOUGHT I’D BE W...
🤒 CURRENT SYMPTOMS 🤒
Numbness, Burning, Tingling, Humming, Buzzing, Squeezing, Skin Sensitivity, Altered Sensation, Balance problems, Chest Pain, Muscle Weakness, Stiff Lower Back, Stiff legs, Stiff knees, Blurred Vision, Anxiety, Depression
👣MOBILITY ISSUES👣
Muscle Weakness, Spasticity, Clonus, Abnormal Gait, Tremors, Walking difficulties, Falling.
😷DIAGNOSIS HISTORY😷
▶︎ Transverse Myelitis (2008)
▶︎ Multiple Sclerosis (2013)
▶︎ Optic Neuritis (2019)
▶︎ Neuromyelitis Optica (spectrum disorder) NMOSD (2019)
💊FREQUENT MEDICATION💊
▶︎ Methylprednisolone (IV)
▶︎ Prednisolone (oral)
▶︎ Azathioprine (oral)
💉PROCEDURES💉
▶︎ Multiple MRI Scans
▶︎ Evoked Potentials (2013)
▶︎ Lumbar Puncture - Spinal Tap (Feb 2019)
----- Links to Social Media -----
▶︎ TWITTER: / spookynash
▶︎ CZcams: / neilbradleyms
----- Playlists you might be interested in -----
▶︎ Tree & Neil's VLOG's - • Chronic Illness VLOG's
▶︎ My Life With Multiple Sclerosis - • (MS) My Life with Mult...
▶︎ Relapses, Steroid Treatment & The Effects - • (MS) Relapses, Steroid...
▶︎ Uhthoff's phenomenon - Heat Sensitivity - • (MS) Uhthoff's phenome...
▶︎ Trying to "kick" Lyrica (Pregabalin) - • (MS) Trying to "kick" ...
▶︎ Molly's VLOG - • Molly's Vlog
▶︎ Birds and Animals - • Birds and Animals
-------------- Music Credits --------------
Artist: Pipe Choir (P C III)
Title: Reach Out Return (to Me)
Album: Ad Astra, Vol. 3
License: CC-BY
Link: • Pipe Choir (P C III) -...
--------------------------------------
Neil and Theresa, I want both of you to know that you are loved so much by many people. Please find strength in that on you down days. I think of you often and pray for you also. God bless both of you.
Thank you so much for your kind words Matthews. Blessings to you. 🙏
Really feel for you in this 🥺empathise totally xx
How wonderful to see you both! I have been looking out for this update. Like many of your channel followers it is good to catch up even when the news is not so good. I imagine the very hot weather is dreadfully uncomfortable and hopefully you will have some relief when autumn settles in.
Sending you both love and healing vibes
Hi Willow, and thanks .. it took me a little longer than anticipated but I got it done (the video). Yes, the hot weather has been challenging shall we say but as you say we're approaching Autumn now which, is actually my favourite season. I love see all the different colours, and seeing the leaves fall from the trees is lovely. Chronic illness really does make you appreciate the little things in life doesn't it Willow. Sending much love right there back to you. xx 🦋❤️
It’s great to see you both ♥️♥️
Good to hear from you also Patrick, I hope you're doing okay.
So wonderful to see the both of you!
Thank you!!
Hey Neil, I understand. My heart goes out.
Hi Steve, good to hear from you.. and thanks appreciate it.👍
It's so lovely to hear from you both and sending you loads of love healing energy and positive vibrations X
Thank you Jackie. xx
God bless you both, from the bottom of my heart I hope your doing the best you can be
It's wonderful to see you again. I am so sorry for all that you are going through. God bless you both.
Bless you Gwendolyn, and thank you. I do hope all is as well as can be with yourself. ❤️🙏
It's so good to hear from you. I have been thinking about you. Continuing to pray for you both.
Thank you so much Kathy, I hope you are well.
Hi Teresa and Neil 😊👋 So very happy to see you both!! I have been thinking about you wondering how things are going. I do have to say Teresa is right… you have to take every bit of positivity whether it’s large or small. You have struggled Neil and still are, but I believe the doctors are going to figure out something that is going to be a game changer for you 💕 Keep positive!! Much love to you both and thank you for the update! Kelly ❤️
Hi Kelly, I'm just sat at my PC as your message popped up .. it's always lovely to hear from you, and I hope life is treating your fairly. Yes, I have to admit things are rather difficult at the moment, and even though the Steroid treatment was a few weeks ago now, I've got to say it hasn't really made much difference. It's worrying that there isn't really anything else they can offer me, so I'll hold on to that kind thought and I do hope there is something out there which is something of a game changer. Take care now. 🦋❤️
It’s good to hear from you everytime, Neil.
Hi Kunal, and thank you so much.. that's very kind. I hope all is well with yourself. All the best.
Hi Neil and Teresa, think of you both often and am so happy to see your video. I am sorry that you have been so unwell. Hope you continue to feel more energy, and less pain. Best wishes to you both x
Hi Marcella, how nice to hear from you.. my apologies for the late reply. Thank you for your kind message, and best wishes to you also. xx
Thanks for the update. I hope when the heat passes, you feel better!
Thank you, I hope all is well with yourself.
Good morning Neil, from Portugal! I’m/we’re sorry to hear life isn’t being very good to you. I’m praying that something will pop up that you will find that helps more, if isn’t a cure. Just making you feel much better, more able to garden and feed Cedric would be good. Much love to Teresa too, big hugs! ❤️❤️❤️❤️❤️❤️
Thanks Susan, I hope so too because I'm rapidly loosing the will at the moment. I haven't done ANY gardening for months, certainly not during summer, I literally just don't feel strong enough. Quite worrying if I'm honest. I hope all is well with yourself, and family. Always lovely to hear from you, take care. xxx
Miss you both and hoping you have a blessed Christmas holiday 🎄
Bless you, we hope you too have a lovely Christmas. 🦋
Neil & Teresa ... It was so wonderful to see both your beautiful faces!!!
I'm so sorry that your NMO is progressing, and I am so happy to hear that you were accommodated to have the IV steroids ... There are little angels everywhere 💖💖💖
Like Teresa said, you guys will take the 10-15% improvement ... Likewise, I'm happy to see an update vlog even if it's in months time & not weeks ... Whatever you can manage & when you feel up to it 💖
I must say I really liked the subtle music you had playing for your vlog ... It was really peaceful ...
Love to you both ...
And Neil, best thing for swollen feet is to put them up & maybe at the hottest part of the day put cold water on hand towels & lay that over them ... Will help to cool your body too!
As for Mrs Bradley... I think she deserves to put her feet up as well throughout the day😁
Lots of love to you both 💞🙏💞🙏
Hi Susannah, and thank you for your message and kind words. Teresa got me soaking my feet in cool water, I wasn't keen on the idea at first but didn't have much choice in the matter ha ha. However, it was REALLY soothing. I've only started suffering with the swollen feet after having Rituximab, but they only swell with the extreme hot weather. Where as prior to having Rituximab, well .. I simply wouldn't ever have swollen feet ever, it's simply something I've never suffered with. Who knows, I suppose it could be age related maybe, but I don't think so.. I'm fairly sure it's the medication.
Thank you also for the comments about the background music, I'm so pleased you liked it. Thing is, I've had some private messages (non CZcams) also about the video and in one of them they say and I quote "get rid of that awful background music. It is most distracting" so you can imagine that knocks my confidence somewhat, not to mention hurt my feelings. Especially as it takes a considerable amount of time and effort to edit and put together these videos. So your kind comments have really helped me out and encouraged me to continue with the channel. Thank you.
I hope all is well with yourself,
Much love to you also - Neil & Teresa. xxx❤️🙏
I'm sorry things are not brighter for you at this time. Just love hearing from the both of you. Thank you for taking the time to update your "Channel" family. Really appreciate you doing so. We all love you guys.❤
Hey Lee, as always it’s really great to hear from you. My apologies for the late response. I’m glad you enjoyed the update. I do hope you are feeling ok and doing as well as can be. Take care.
Aww Neil...so sorry❤❤
It's ok Pauline, thank you though. I hope you are well. 🦋❤️
Good to see you both again, Neil. The weather has certainly been stinking hot of late! Sorry to hear about your feet. Easier said than done, but try and keep them propped up when you can - it may help with the swelling.
Thanks Steve, yes the hot weather certainly has been challenging for us hasn't it. My feet have now gone down to normal, but I've only started suffering with swollen feet/ankles since having the Rituximab treatment, and it only happens in the weather as well. I hope all is well with yourself.
Oh thank you!! We have wondered about you. I could feel your weakness in body, and yet perceived an inner strength at the same time. Your mind is sharp. Your heart is willing. Good people you are. One moment at a time, Neil and Teresa.
Good morning Elaine, thank you for your lovely message. You’re right about my mind being sharp, it is, and I always want to be doing something. This is why I’m so frustrated because my body is failing me, it’s actually scaring me at the moment, as everything just seems to be spiralling downward out of control. I wish I could be more positive, I’m trying to focus on the things I enjoy and are helpful. Im currently fixing the neighbours Laptop 💻 and then I’m thinking about building another computer. Distraction is one of the best medicines. You take care.
@@NeilBradleyMS Absolutely true about the distractions helping a bit. And Neil, i am in the exact situation, with my mind sharp and clear, and yet my body falling apart more every day, debilitating me so. It is surely discouraging. WE will keep busy with intellectual and practical pursuits, then. That's the key now.
Omgawsh I am so happy to see you both. You’re such a sweet couple and your love for each other is so precious. I’m so sorry you have been going through it Neil 🥺 and your sweet girl going through it with you. She’s a saint❣️Glad to hear you might be getting a tad more relief and really hoping the steroids will kick in a bit more over time. I’ve been getting injections in my spine for all the pain I’m dealing with as well but my last injection not so good. I will be getting a nerve block in my cervical spine in October so I am looking forward to having my pain controlled a bit more but my insurance won’t cover the middle of my back until 1 year after my cervical nerve block. Only problem is the blocks only last about one year. I will have to come up with about $3000 to get it done☹️ And that will be a rough one but I’m grateful they are covering some of it. Crossing my fingers for you and keeping you both in my thoughts for well wishes❤️❤️
Sincerely,
Christina
Hello there, as always it’s LOVELY to hear from you. My apologies for the delayed response. Thank you for your kind words, Teresa surely is a saint that is for sure, I can’t imagine life without her, not because of all the help she gives me but because I love her so much. She’s an Angel, in every sense of the word.
I’m very interested to read about the treatment you’ve been having, and I’m glad to hear the nerve blocks are effective to some degree for you. We just need that bit of relief don’t we, something that just takes the edge off and allows us to function a bit better.
I’ve also found with the steroids I have that they are no way as effective as they used to be a few years ago. And, there’s nothing else they can really offer me now.
I do hope you manage to come up with the funds to help with your treatment. Have you considered setting up something like a Go Fund Me page where people can donate. You can explain your circumstances and share it on social media. I’ve never done it myself, but know people that have. There are so many kind and caring souls out there, you’d be surprised who’s be willing to help. I would certainly contribute.
These damn insurance companies have got no idea, they need to spend five minutes in ours shoes don’t they.
Sending much love and hugs, Neil & Teresa. xx
Your channel came up on a search for MS info. I just wanted to send my best wishes to you. You are both so lovely.
Hi Carolyn, thank you so much for your kind message. It’s lovely to hear from you, I hope you are well. 🙏
Hi Neil,so glad to hear from you and Teresa. Just started watching,I'm having terrible pain in my legs and numb toes. It's all to much for you and I at times right,eh? Sending you health and healing vibes your way!! Steroids aren't good but there is nothing much else to take for relief. Way to go Neil walking and conserving your energy,you did it!
Hello Avril, lovely to hear from you.. I very sorry to hear you're having such pain in your legs and toes, definitely not good at all. Let hope you manage to get this under control and it is short lived. I too am having very similar pains, in fact I was up at 5:45am this morning just sitting on the side of the bed not knowing what to do with myself. Can't sleep because of the pain, can hardly walk because of the poor mobility. Slowly loosing the will I think, that's how it feels sometimes. Sending some healing vibes to you also my good friend. x
@@NeilBradleyMS I'm flooding you with hope and know you aren't alone. I cannot sleep,they do not like to be touched or have any pants on them. I'm hoping for you my friend & I better days!!
Thinking of you guys! I've had another relapse of MS like symptoms after two years which is when I discovered your channel.. I really feel for you. Pain and numbness and other symptoms are depressing. So important to do small things to distract the mind. I hope they find something else that helps you.
Hello there .. and thank you for your message. I couldn't agree more, I too have found distraction one of best medicines. However, there are times even that has failed me. I'm sorry to hear you've had a recent relapse, not good! I hope you've been successful in managing the symptoms ok, which I hope by now have subsided somewhat. Take care.
It's hit and miss with managing pain. Have to get back to the doctor soon and tell her the pain hasn't gone. I've been mindful to get enough vitamin D. I hear that helps with demyelination. Though, it's hard in summer when it's too hot to get out. Seems like we in Australia had an English summer and you guys had an Aussie summer almost.
This is the first CZcams video I’ve watched in months; since the last time I said anything on my own page. Haven’t even looked to see if there are any comments.
Just watching this video is probably a huge step forward. Which I needed. Just communicating in sentences is something I haven’t really been able to do for a long time. Hopefully I’ll keep watching videos and maybe make some, too, but just watching this video is probably significant progress for me.
Baby steps. Sometimes they’re huge. For both of us.
Hang in there, Neil. Keep watching for baby steps.
Ryan!! It's wonderful to hear from you, a lot of people have been worried and concerned for your health and general wellbeing (including Teresa and I of course). It really has been a long time hasn't it.
I'm so please you've taken that big step forward and watched my video.. if you decided to make a video and give us all a bit of an update, that would be wonderful.
As you've probably gathered from my video, things aren't too great with myself.. my weakness, pain and other symptoms just seem to be spiraling downwards out of control. The only treatment they can offer me doesn't seem to be working at all now.
As you say though, baby steps.
Hope to hear from you again really soon.
Im devistated you are not reciving the relief from your treament. Im overjoyed to see you and Teresa even at this time. Loving hugs and kisses to you both
Bless you Dilliya, and thank you. I hope you are well.
I love u both so so much. Thank u for doing this. 💗
Thanks Shirley, much love and thoughts to you also. I hope all is well with you? 💕💕
Sorry to hear about how your doing, this fatigue is horrible for us ,I'm now in wheelchair all the time its hard to stay positive at all,sorry
Hi Chris, thanks .. Yes I recall from a previous conversation about you being in a wheel chair now, so very sorry to hear this. Life just doesn't seem fair does it, I really miss my old life, just doing the simple things like going round the shops with Teresa, or paddling in the sea. Everything, and I mean EVERYTHING is tinged with PAIN now, and there doesn't seem to be any escaping it. Rapidly loosing the will. You hang in there.
So lovely to see you both..Sorry you are feeling this way Neil..Even at your lowest you still reach out to us..Wishing you both all the best..Sending you both lots of love and hugs ..The hot weather has been unbearable hasn't it 🥵 Take care both of you 🌹🌿🍃🌹🌿🍃🌹🌿🍃🌹🌿🍃🌹🌿🍃
Hey there, and thank you for your lovely kind message. My apologies for the late reply! Absolutely, the hot weather has been a bit of a killer hasn't it.. fortunately here in the UK it's now cooled down somewhat, and we're having a fair bit of rain just recently which we've been desperate for. Won't be long until my favourite season (Autumn) is here, love the cooler crisp mornings and it's easier to maintain temps etc. I hope all is well with yourself. - Neil & Teresa. xxx
@@NeilBradleyMS love the autumn we've certainly had it all here in the UK lots of rain the too hot weather..so glad autumn is here 🍂🍁 my older dog passed on the 10/10.. I am truly heartbroken 😥💙🌈..my Stanley was 8 ..he filled the huge hole my Alfie dog left in 2014😥.. My Lhasa apso bailey is four he's missing Stanley too..I have a large garden here in Kent and all the autumn leaves look beautiful 🍂🍁🍃❤️
Hey there, I've said for many years Autumn has always been my favourite time of year. I love the cooler weather, the leaves dropping and all the different colours, but also everything starts to slow down in the garden and doesn't seem so much work.
I'm so terribly sorry to hear about your beloved companion Stanley, I know the absolute heartbreak of loosing our fury friends. I find it comforting in the belief like us, their souls live on and in fact they're not far away.
Thank you for your lovely message, and take care - Neil.
Just so glad to see you both.
The heat was a bloody nightmare eh?
I have fat feet a bit like barney rubble lol
Ahh bless you Michelle .. I've only started having the "Oedema" swelling in my feet and ankles since having the Rituximab treatment. However, the swelling only comes with the hot weather (yes it's been a killer). I've endured plenty of hot weather in the past without having swollen feet/ankles, so it's got to be a side effect of the Rituximab.
Oh, and by the way .. not sure about you but The Flintstone used to be one of my absolute no.1 all time favourite cartoons. They don't make them how they used to.
Hello both of you! So pleased to hear you again! I’m watching this in November!!. Hope you are ok, are you planning any more videos? I do hope so, but I do hope you are feeling better lots of love to you both ❤xxxx
Hello Gerri, how lovely to hear from you, as always. I'd be lying if I said things were good (with my health), unfortunately I just seem to be deteriorating on what seems to be a daily basis. I've got a significant amount of pain almost constantly in my legs, and I find I have to try and keep distracted from it as pain meds simply don't work now that my body has built up a tolerance (I don't want to increase meds unless I really have to). Even though I'm as active as I can be, my muscles seem to be wasting as well making weakness a big issue.. walking is very difficult now.
Sorry I don't have better news.
I've not really been doing many videos, I'm just lacking motivation and 'get up and go' due to how my illness is making me feel. I haven't given up on the channel though, and I always try and reply to people, but the subscribers are dropping off now sadly.
How are things with yourself Geri?
Oh sorry Neil to hear that you are like this. It is so very difficult to plan ahead with this disease. I find that I have no motivation to do things that I really want to do like I used to. I was diagnosed with RRMS in 2021 but it appears that I have had this since 2007. I feel like you in that there is a gradual decline as the walking isn’t great. I do miss you two doing your videos, I’m still watching!!!
in fact I’ve gone back to watch past ones. I hope that somehow you are able to get back on with the videos, for all of us watching, but also for you two, as I’m sure you love doing them it must be a great help to you both to share things with us all as we enjoying watching them lots of love to both xxxx
Thanks Geri, yes I am significantly lacking motivation but would like to do another video at some point. We do appreciate your loyalty to our channel and it’s always lovely to hear from you. Take care. xxx
Hello my adorables. I miss seeing both of your lovely faces, but I do understand you are really suffering
right now. I do think of you often, and I wish I could help. ❤❤❤
Hello Neil and Teresa, I guess things are not going very well health wise. I am really sorry that nothing seems to work with you. I just happened to think about you and thought I would drop a message. Big hug to both of you from Italy, whenever you feel motivated we'll be here waiting for another video. Ciao!
Thank you Kara, that's so kind of you. You're right, my health isn't great and just seems to be progressively spiraling downwards with increased pain and worsening mobility. I really appreciate the check-in from you, and both Teresa and I would like to send you a Big-Hug right back there to you Italy. I hope all is well with yourself, take care. 🙏👍
Hello my dear friends
I am so happy to hear from you again, but not happy to hear you are not doing so well. You both are still in my prayers🙏🏻 I’m hanging in there with my Parkinson’s, been having a little more tremors. We just moved to Florida 2 mos ago and I’m not at all liking the humid heat! Ugh! I do better with mild
Cool weather.
For what it’s worth, the both of you look great! I’m praying for you both and much love I send.❤️😘
cool weather.
Great. I wish you much love and he
Hello Karen, and thank you for your kind message. My apologies for the late reply.
Hmm, I'm sorry to hear your Parkinson's isn't behaving itself with the slightly worsened tremors, let's hope that this improves with time, and your managing it ok.
The humid heat at your new place of residence doesn't sound too good to me I'm afraid. We are then same in that respect, I too much prefer the cooler weather.. Summer here in the UK ends on the 21st Sep and we enter into Autumn so I'm looking forward to being able to control temps a bit better. Mind you, having said that we are currently having much cooler and manageable weather at the moment, I think the heat waves are behind us now.
Sending much love and healing thoughts to you - Neil & Teresa. xx
Neil, so glad to see you both. I am sorry you have been feeling so poorly. I have been feeling okay, but the heat has definitely affected me... more neuropathy, less energy.. you know. So good to see you!
Hello Cynthia, great to hear from you .. yes the heat has been a bit of a killer hasn't it. It really does effect us badly and I often find it's hard to explain to 'normal' healthy people why it does. I'm not sure where abouts you are in the world, but here in the UK it's starting to cool down which is certainly welcoming. Take care now. Neil. x
@@NeilBradleyMS I am in Nevada in the US. It is still hot, but will start to cool down in a few weeks. I got approved for a custom wheelchair, so I am glad about that. I never thought I would be excited about getting a wheelchair!!
I'm pleased for you Cynthia.. the excitement is probably down to the fact the wheelchair may well give you a little more independence and allow you to get around without so much pain a little easier.
I hear you neil sending positive energy your way! I was diagnosed with ms a few years ago i am 29 now it is a huge struggle, i feel as the ms nurse service should be more helpful atleast pick up the bloody phone instead of talking to a voice mail all the time.
Hey there, good to hear from you. Not good however, to have an MS diagnosis at such a young age. I’m very sorry to hear this.
I hear what your saying about the the MS Nurse service, but they’re literally so busy and inundated they simply don’t have enough resources for somebody to be manning the phones all the time. The team used to comprise of two (maybe three) people but now it’s down to one person again, so very under resourced. I can’t complain, I always feel I get a good response but not only that I feel they care genuinely.
I hope all is well with yourself. All the best.
Hello my adorables, it is 90 degrees here and I stay mostly in the house every day.
I am so sorry you are suffering so much. I think about you every day.
Tree look’s especially lovely today.
I heard about the heat and drought in the UK.
Neil, I wish only the best for you. The heat makes the pain worse doesn’t it.
My legs cramp really bad.
Love you both.🥰😘❤️
Hi Shanti, wow I’m sorry to hear it’s so hot and debilitating for you. I too, remain in the house a lot these days, that’s due to my lack of being able to move about now though. It’s either house or car. Much love to you also. Xx
Good to see you Neil and Teresa, sorry it’s not under better circumstances, but I’m glad you were able to get the IV steroids since you’re going through such a tough time. Bless you both for filming on such a hot day, I wouldn’t have known until you mentioned that the dates! Is your condition treated by the MS team still and still under the MS nurse? X
Hi Georgina, lovely to hear from you. My apologies for the late reply. I was hoping the IV Steroids would pick me up a bit, but recent years they haven’t really had the desired effect, and this time is the same. So I think it’s just disease progression unfortunately, as now several weeks later I’m still no better than I was really. Yes, my latest diagnosis of NMO (Neuromyelitis optica) which is still an autoimmune condition (of a rather sinister nature) still gets treated by my MS Nurse led team which I’m pleased about, because credit where it’s due, they are really good and I always get the feeling they genuinely care. I hope your situation is improving, we think about you often. Take care of yourself now. xx
Neil I am sorry you are not feeling well...keep going...I am sorry you are not doing good...I am overvus...feel medicine has weaken me alot... really hope you will do okay...love you both🥰
Thank Michelle, I appreciate your kind words.
My apologies for the late response. Yes, I agree with you there about medication.. I too feel it's weakened me a lot, and continues to do so. However, when I try and reduce my dosage of say the steroids I take every day, I notice within a few days I get significantly worse in respect of both pain and mobility. So I feel now I'm stuck between a rock and a hard place if you know what I mean. I hate being on all this medication, never wanted it .. but then again I never wanted any of these health problems either.
I'm sure you're probably the same and feel like throwing your hands in the air and thinking "what else" is going to be thrown our way.
Sending much love - Neil & Teresa. xxx
Glad to see you! Sorry this disease is giving you trouble.Stay strong Ang know life is always worth living because you and Tree can do anything together! God Bless you both.
Hi Jennifer, my apologies for the late reply .. it's lovely to hear from you. I have to say, what with everything I do feel sometimes life is very difficult and I think a lot to myself "why me?" especially as I've always tried to be a good person and help people all my life. It often upsets me when I think there are evil people out there, such a Putin causing endless pain and suffering to people, in perfect health. Why isn't Putin suffering with his health like I am. It just doesn't seem fair somehow. Moan over.
Take care.
No need to apologize for not replying fast enough, Neil! You have many more concerns that need your attention than us Facebook friends in cyberspace. Nor do you need to apologize for "moaning;" You're sharing with us a glimpse of part of your life in these videos & our diseases wear us down.
The day of my 1st MRI in October 2014, as I sat at the bottom of our basement steps, waiting for the washing machine to spin out (finish), I thought to myself, "this must be part of those repercussions..."
When I went through a divorce in 2000 with a one year old daughter, my pastor's wife told me I was doing the wrong thing because my spouse hadn't cheated on me or beaten me. (He had alcohol & substance abuse issues.)
I never prayed to God Almighty more than during that year, and I never got anything back but comfort and peace...
But when I thought about "those repercussions," I heard a very stern, clear voice reply, "You are NOT being punished."
Now, I've never heard voices before or since, but that voice was so Audible that without thinking, I turned around to look toward the washer to see what or who that was! Nobody.
You can call me crazy, but I believe people's experiences are truly their own, and that was mine. I sat there & thought about it. I never had even thought of repercussions as punishment, so I was a bit perplexed. Then I realized that I WAS dying to figure out what had been causing my vertigo, trouble word finding, etc. & that's why I was going to finally have an MRI that afternoon.
I didn't expect to be diagnosed with MS, I just wanted answers for these symptoms that'd been plaguing me for the past 18 months & counting.
But it DID seem like symptoms were the result of something I'd inadvertently done wrong. Was it because I'd put Sucralose (sacharine) in my coffee? Wasn't drinking enough water? The crystals in my ears became disodged? On & on; it was none of those.
Funny thing is, I don't think I ever wondered, "Why me?" Not because I'm different or special; I've been through just as much he'll as the next person.
Accidents, sicknesses, the divorce; my though on an MS diagnosis was, "Why not me?" I'm no different than anyone else. If only 1 in 1,000 people (I think it's closer to 1:600 here in Northern Maine, USA,) I'm just as likely to have it as the next poor shmuck.
Not saying that's how you should feel (or anyone else with any other disease), but that's how I feel, Neil!
Think of all the tricks you've learned because of your condition. You've learned to simplify life as much as possible, you know what's important & what really doesn't matter. You & Tree have grown closer and have confided in each other you might not have otherwise.
Am I right? Or at least partially? Think of it this way: because of your NMO, you've changed, learned, adapted. That's resilience!!
One last thing: I console myself wth this thought, "I have a condition that only1:1,000 has because I'm better equipped to handle it."
We got this, Neil! Not every moment of every day, but "All things are possible with God which strengthens me."
And sorry this is not short & sweet, but I am neither short or sweet. 😁😂
Thank you Jennifer, as a rule I rarely do short & sweet either. I really appreciate your wise words which I can very much relate to.
I DON'T THINK YOU'RE CRAZY! And, I'd like to thank you for sharing your amazing experience when you heard the voice saying "You are NOT being punished". WOW!
For me, this is very re-assuring, because I myself often feel like I'm being punished also, still do. It's hard not to feel that way when I see every single day of my life people going about their business without a care in the world, and there's me struggling with every step, like this morning at my hospital appointment. Why me? I'm finding myself envious of other people. My usual line to Teresa when somebody walks past us (because EVERYBODY does) is "They don't know how lucky they are!" (literally being able to walk, and pain free too).
I too have been through a nasty divorce back in 2007 (I was traded in for a younger model), then literally a matter of days after I was 'asked' to leave I started with tingling in my feet/legs. The start of all my health problems! The stress was massive, and I've always wondered if this activated my condition. Too much of a coincidence to disregard it.
Going back to the voice you heard, I have recently found myself doing something I've never really done that often, and that's saying the odd little prayer.. I find it helps and it would be lovely to receive something in return as you did yourself.
Another thing I often say to Teresa is "There better be something at the end of all this pain and suffering, otherwise what on earth is the point!" .. and I honestly believe there is Jennifer. Verification, such as in the words you heard must have felt phenomenal, something to really cherish. Perhaps one day you will once again be able to connect with this same energy.
You are indeed correct, I am having to adapt my life and simplify it because of my health. One of the most traumatic things I've recently had to deal with however is giving up my job of 30+ years (Computer programming). My health has finally forced my hand, as everything just got too much. I've always felt I have so many skills to offer, but now I just do the same thing day in day out in life, these four walls.
Now I'm having to deal with yet another health issue which I've not yet mentioned on my channel, it's hard not to feel like somebody, somewhere is thinking .. Ah Neil is coping ok so far what I've thrown at him, time to send him a bit of something else..in addition to what I'm already trying to cope with.
It's hard say, but I feel like I've no longer got any purpose in life.. just pain and suffering. Nevertheless, I'm incredibly blessed with Teresa and my awesome loving family. I appreciate the fact that not everybody has this, they ground me.
Goodness, and you thought your message was long. I also warned you, I don't do short and sweet 🙏🦋
@@NeilBradleyMS Great to hear back from you, & actually relieved you don't mind reading long comments. Some people won't even take the time to read that much. I completely stopped writing yearly "reviews" to enclose with my Christmas cards when, the year I was diagnosed with MS, my aunt asked me the flowing summer if I ever found out what was wrong with me...
I'm sorry you've also been through divorce, it's not something I'd ever dreamed I'd go through, but I was young & naive. I didn't know what to look for in someone who does drugs secretly or how much alcohol is acceptable or typical because I was fortunate enough to be raised in a home with parents who didn't smoke, drink, or drug, but I had no idea what was acceptable in our marriage & what wasn't.
I was 21 & he was 34 when we married, and he was always overly aware of the difference in our ages, though I was fine with it. He never stopped telling me that someday I would leave him for a younger man, & I kept telling him I wouldn't, stop trying to sabotage our marriage and enjoy it! I really did love him, but aside from his flaws, I don't think I could have remained married to him because of the inner demons he fought. Knowing more about me mental health today, I think he was bipolar because our relationship was either very good or very bad; never balanced.
And as for your first symptoms arising after your divorce, I absolutely believe that contributed to the onset of your ailments. In January 2013 I was Student Teaching at our local highschool; the final capstone in earning my BS in Secondary English Education. That in itself was very stressful because this was a time that cost the equivalent of 5 college courses and I couldn't achieve an A, B, or C; I could only pass or fail! And since I'd already earned a 2 year Associates Degree in Accounting after high school 20 years prior to this, my financial aid/student loans were now maxed out. (No pressure for a person who is a perfectionist, right?!)
And I know Student Teaching is no comparison to a divorce, but I think all types of stress is stressful. If you've ever read about the earliest known case of MS in the 1800s in a British man named Augustine, I think, he had come home to visit some one he thought a lot of, only to discover he'd just died.(This was written of in his diary.) After the funeral, he mentioned his "difficulty to make water," which I understood to mean difficulty urinating. He mentioned other symptoms that later became the rationale for noting this as very possibly one of the earliest cases of MS before it was even called "MS." (Like you, I've been fascinated in learning everything I can about this disease.) Going back farther than Augustine, (Who was allegedly the illegitimate son of one of Royalty, btw.) was the Patron Saint of Ice Skaters! I'm a born again Baptist/Christian, so I don't know the names of the Saints, but apparently she had many symptoms coinciding with MS, though having a finger fall of is probably a result of frostbite, not MS!
One of my local friends with MS has such a limited # of symptoms that her siblings don't think she even has MS, despite the fact that she is legally blind due to a bout with optic neuritis! When you did your video about NMO, I instantly thought of her, and even told her about you, I hope you don't mind. Her neurologist (who happens to be mine) failed to give her a follow up appointment, so I don't think she's even had an MRI in over 3 years! I encouraged her to not let him drop the ball; we need to advocate for ourselves & call back to make a follow up appointment or just try another neurologist.
Neil, how are you doing now? I can relate to some of what your going through
I have Parkinson's but years ago I was convinced it was MS. I too take Rituxan and I find it is helping me. Pace yourself Neil and don't beat yourself up for what you can't do but praise yourself for the small daily victories
Hi there, I've been better to be honest.. I just seem to be spiraling downward with worsening pain and mobility, medication/pain relief just doesn't seem to be working, kind of lost hope. I'm sorry to hear that you have Parkinson's, this must be hard for you to deal with, but I am happy that you are gaining some benefit from Rituximab. You're right, I do have to pace myself but it's really difficult because I used to be able to do pretty much anything I put my mind to, but now the body will no co-operate and it's VERY frustrating.
@@NeilBradleyMS Neil, I wished I had magic words to help you feel less hopeless and frustrated. My husband has rheumatoid arthritis pretty bad and he still struggles with the weekly shots and how it makes him feel sick for 2 days out of the week. I'm a spiritually minded person and he's not. I get my strength and hope from the Bible. It's not a cure all for sure but it helps. I hope you'll find something good each day to enjoy, the smallest things can be :)
How did I miss this? Oh my! I've been watching but... I missed it! Hugs to you both! The pain is beyond hideous. My MS is progressing. New lesion at C6. No doctor. No treatment. I feel for you so much guys!! I'd thought about you so often and wondered and worried. Hugs. All my love to you both!
Hello J, ahh I'm so sorry to hear that your pain is worsening, definitely not good. I expect this is due to the new lesion at C6 which is the Neck, this could be causing upper body symptoms and pain. So sorry J, hopefully in time it will settle down somewhat and give you some respite. When you say "no treatment", I was kind of hoping the hospital would have offered you Steroids at least, this would help reduce any inflammation and possibly and further long term issues with the lesion.
We're kind of doing ok, just taking every day as it comes, some days every hour though. Like you, I'm just so tired of pain day in day out. Sending much love and healing to you, please take care - Neil & Teresa. xxx
@@NeilBradleyMS There are no MS specialists that will take me here (insurance issues). I've been fighting to see the only one who seems to handle this insurance. She is about 4 hours north of me. I finally have an advocate who is calling my doctor on his indifference and lies. He has given me tiny doses of prednisone in the past. 200mg in total per each round. Once I was given 5mg per day. It helped so much I was almost giddy with joy. But as we both know 200mg in a month is just not doing much. UGH! hang in there as much as you can! I wish I could help! Hugs and hugs! Jacquie
I'm on the Prednisone (spelt slight differently in the UK - Prednisolone, but it's the same drug). I'm on 25mg a day, used to be on 40mg but I will say the side effects aren't particularly nice. However, the drug is good and it works well which is the important thing. I hope you manage to get back on it, especially as you know it helps so much. The steroid is a powerful anti-inflammatory which, is why you noticed it helped so much. I understand about the 4 hours distance, I find it difficult to travel any distance further than a few miles now days. Part of the problem now is, because I have so many health issue I just don't like being too far away from home.
@@NeilBradleyMS I absolutely hear you! Prednisolone is stronger than prednisone. I'd just like a doctor who doesn't brush me off. He actually claimed Oct 3 that I was not showing any progression. That my MRI had not changed. I brought it with me and showed him where it says there a new lesion. He looked ashamed. He lied about faxing my files to the specialist. I've apparently had MS for over 30 yrs. I'm not able to function as well now. Pain and spasm and weakness is starting to make me less willing to get out. Today we go see my oldest son so he can take his little brother trick or treating (youngest is 21 and has autism). I dread the trip (40 min north) but I LOVE seeing my oldest. I use that like the carrot on the stick to force myself out. Doctor Boster wanted me on meds 2 1/2 yrs ago when he diagnosed me. I don't even have a specialist yet. It's aggravating to say the least. And those days when the pain really raises up... oh awful. You and I understand each other's situation. I'm so glad you have Teresa! Hugs to you both.
Hi Jacquie, Hmm I didn't realise there was a strength different between the to Prednisone/Prednisolone.
I know what you mean about the Dr's, I often feel I actually know more about my condition than the actual Dr's and consultants. So he should have been ashamed for not spotting the new lesion! When I visit my Dr's I have all the Neuro exam etc, but they never discuss it with me, or explain their finding etc, I always have to ask questions.. like getting blood out of a stone sometimes, so annoying and frustrating.
Jacquie, I know all too well that feeling of not wanting to go out because of pain, disability and weakness, you're not alone!. I'm sure you probably also know the feeling of your knees not wanting too bend maybe, for me this is a real problem along with stiffness in my legs. Both my legs just feel like their wrapped in clingfilm being sqeezed very tightly. I never get a break from the pain, and what I'm finding particularly depressing at the moment is, I'm still left in loads of pain even after I've taken all my pain meds. My body has just built up a tolerance to them rendering them defunct. I'm trying to resist the temptation of taking more, so far I've been able to but how long can I stand the pain, that's the question. I'm finding it difficult.
Yes, we do indeed understand each other's situation for sure!!
I recall you telling me when you went to see Dr Boster, are you not on any preventative Disease Modifying Therapy for your MS?
I do hope you managed the trip ok to see your eldest son, and that you enjoyed your outing. I've got that many health issues now, I get scared of going anywhere new, real fear and anxiety.
Best to you - Neil. x
Thank you Neil and Teresa for uploading this video. I know it is challenging. I want you to know that it is appreciated by me, a fellow traveler on a similar journey. You both have helped me along the way. In my feeble way, I will try to reciprocate with my words. Here goes:
In my study of pain, my personal experience with it, I have learned and observed a few things that are somewhat helpful to me. Possibly they will be for you as well.
It seems that those with a critical mind, the analytical thinker, have a tougher time with pain and enter into the realm of suffering. I put myself in this category. Based on your videos, I feel I've come to know you a bit and feel we might be the same, in this regard. I want you to know first, you are not alone. Secondly, and here is where it gets hard; pain is a certainty, but suffering is optional. This little motto of "PAIN IS CERTAIN, SUFFERING IS OPTIONAL" was a refrain of the cadre during my military experience as a paratrooper. (No I'm not going to tell war stories) It's not about that.
I'll cut to the chase and just write that it has helped to break a mental hurdle that seemed insurmountable. If I define pain as something that physically hurts and deal with that and separate it from suffering I can live a little better, I have found. The poison of suffering is the mental part of thinking "If only I could do this, or that...Or "I once was able, now I'm not" And the worst is envy. The green jealousy of the able-bodied, who don't have my infirmities--If I can avoid this manner of thinking, I sort of understand the "suffering is optional" thing.
I know these are just words, and I'm ill-equipped to convey them as well as I should, but thought-- if this little mental slight of hand trick to separate pain from suffering has helped me, as one who does not go for the power of suggestion, or other nonsense, maybe it will help you too? I only revisited it out of some desperation when that old Army phrase came into my mind a few years ago. It only took me 36 years from the time I first heard it, to know what it meant.
Peace ;)
Hi John, and thank you for your message which, I've read with significant interest and taken on board what you've said.
Yes, I am VERY analytical and I'm continually trying to 'figure' it all out and I do have tough time with pain (which is 24/7). Especially as I'm always trying to look for ways to help with the pain by altering meds etc, then it doesn't work. Everything just seems so random with too many variables to consider and nothing works. I feel like throwing my hands up in the air and screaming from the roof tops &^*% it!
It really does help to know I'm not alone, and that is the beauty of being in touch with somebody such as yourself, and lots of others via my channel. Sharing experiences definitely helps and is a form of healing in my opinion.
As I'm reading your message (I'm on my PC) I'm responding to each paragraph, but I've just come to your paragraph whereby you talk about the green monster of envy and jealousy. WOW OMG!! You have just said and described what I have thought, and goes through my mind pretty much multiple times a day, EVERY DAY. You see, I used to be such an active person, and now I'm reduced to struggling to walking to the bottom of the garden to even feed birds. Something I love doing, and I feel they rely on me.. my fear is now though that it's not going to be very long before I'm going to have to give that up also. TEN YEARS AGO I WAS FULL POWER! It's hard to believe that, and now it's very scary indeed.. I grow more and more in fear of my body each and every day. As I sit in my car and watch able bodied people, it's like slow torture. I think to myself, why me .. all I've ever tried to do is be kind, help people where I can, generally be a good person .. then you see on TV garbage such as PUTIN causing all this hurt, suffering and anguish to others, and there again I think "why me?" why isn't HE suffering as I do, somebody I feel deserves to suffer.
Nevertheless, I see where your coming from, and I agree with you.. to try and take control, difficult as it is. I really appreciate you sharing this John, and I will endeavor to really take it on board.
Always pleasure chatting with you my friend.
Best - Neil.
@@NeilBradleyMS Thanks for your reply Neil. As I mentioned we are on a similar journey and I did not want to come off, as though I've got it sorted, because I do not. I did reach a point where the line between the physical and mental struggle became a "Gordian Knot" that I could not untangle. Not being the type to go for the shrink and couch routine, I sought to figure out the mental, since the physical was only going to get worse regardless of what I did. As it will for all mortal beings at some point, including Putin!
The first book I read as a child was "The Lion the Witch and the Wardrobe" by C.S. Lewis. When I cynically began to try to understand my agony from an intellectual standpoint, I found a Book by C.S. Lewis titled "The problem of Pain" This was many years ago, but that Man had such a profound way of communicating in verse, that it helped understand my own physical agony. In so doing, it somehow helped with the mental part, for me at least. Strange how a the same guy who opened my imagination with a children's book when I was a boy, would also help me understand the bitter cold hard facts of physical pain. Not quite enough to kill the Green Monster, but it has been a source to escort him into a cage. You and Teresa, my friend in sharing your journey, is also a tool in this endeavor, not for just me, but all of us who follow you.
Hello friend, it's great to find productive people like you. Nice to meet you
Hello! Thank you for your kind message. Nice to meet you too. 🙏
I want to say hi. I just asked the Lord to guide you both. I was given a 2nd pain med. It is helping some. I sure do appreciate both of you, your personalities, the way you love each other & hang in there.
Hi Shirly, you're so kind.. thank you for your kind words. I'm really pleased to hear the pain med is helping somewhat. You take care. x
Hello my friends!! Good to hear from you. Keep your spirits up and I know what you mean about the steroid treatment...no longer works for me either. I will keep you and Theresa in my thoughts and prayers! Stay cool!
Hi there, my apologies for the late reply. That's very interesting to learn that the steroids no longer work for you either! Just out of interest, how long have you been having the steroid treatment? For me it's ten year on and off.
Hello there, and how lovely it is for you to leave me a message, thank you for that. It's very nice to speak to you, and I happen to think your English is excellent considering it not being your first language. Thank you also for sharing your experience with this dreadful condition, and the medication you're currently taking.
I'm very happy to hear that your mobility has not been effected, I do feel it's important to be on a preventative medication such as Gilenya. This will help prevent your immune system from attacking good tissue, so that's good. The steroids help particularly when your having an attack (or relapse as it's often called) and they will speed up recovery, but the outcome will always be the same.
I'm not sure how many of my videos you've watched, but in 2019 I was re-diagnosed with a more sinister condition called NMO (Neuromyelitis Optica), you might have to Google that one as it's too much to type on here. It's still an Auto-Immune condition like MS, but it's considered much worse and significantly more painful, which I can definitely agree with (documented in more recent videos). Since having my MS diagnosis in 2013, I've always thought it wasn't quite right.
I won't deny life is very difficult for me, I don't go far now and stay home a lot of the time.
I wish you well, all the best - Neil.
Send you all my Love and thougts. Katja
Thank you Katja, that's so very kind of you. Sending much love and healing thoughts to you also - Neil & Teresa. xx
May the lord bless you 🙏🙏🙏🙏🙏 give you strength ❤️❤️❤️🙏🙏
Thank you.
hang on! you are not alone.
Thanks Tom.
Hi Neil and Teresa I have been wondering how you were but I figured no videos meant that all is well and you were busy living your best life. I didn't know you were struggling so much I am so sorry. I'm in the United States and take Ocrevus and I will say this summertime here for me over 75 degrees and I get my symptoms back or exasperation of old symptoms and hot weather always brings it on. I have what they call heat intolerance and there's nothing I can do just keep as cool as possible. Stay in air-conditioning sip cold water and eat Popsicles to cool down my core temperature. It helps somewhat. I watched a Dr talk about heat intolerance and all the is needed to trigger anything including attacks is your core temperature to go up by a half a degree. That's not much but it activates our a immune system response. I don't know if this will help you Neil or not but just maybe it could give some relief perhaps. Just as a side note too much cooling could trigger cold symptoms so I guess the trick is moderation. I'm sorry you are so unwell. Maybe this could help as well. I wish the very best for you both. God bless you both. Take care. Peace. 😇😊🤗
Thank you Pete, for your kind and caring words. Yes indeed, heat intolerance .. I am all too aware of that (unfortunately). As I'm sure you are well aware, it can be at times extremely difficult to manage can't it. You may be interested to look up "uhthoff's phenomenon", I've actually done several videos on this myself and this is the cause of the heat intolerance. I'll pop a link in to one of my videos below for you.
Keep on fighting my friend.
czcams.com/video/dSeurvAoZl0/video.html
czcams.com/video/lnqNM9CsytM/video.html
Hello guys and hope you are doing okay. Haven't written and was bedridden because I got COVD and it did a number on the MS./ But every thing okay now and doing great with new meds. How is the life in the UK as we approach Thanksgiving and Christmas. Praying for you guys everyday and we shall overcome.
Hello Bodhi, how nice to hear from you. So please to hear you've recovered ok from Covid, we've managed to escape that one! We're plodding along, I'd be lying if I said I was great, but taking things day by day, often hour by hour. Take care my friend.
I've been watching your videos, I was looking up lumbar puncture because I'm freaking out about it. My neurologist wants me to have one to confirm ms diagnosis. 11 lesions on my 🧠 he said so either 11 strokes or ms. I've also had serious back problems since 21 yrs. old, along with muscle weakness. Had to stop jogging a few years ago. I just want to be able to play with my grandson . I understand your depression 😔 the hospital im going to for the spinal tap doesn't offer anything at all for the fear and anxiety of it
Hello Luna Blue, thank you so much for sending your message. I'm so terribly sorry to read about your neurological symptoms which, it sounds like you've been dealing with for some time.
I completely understand about your wanting to just lead a normal life, and as you say play with your Grandson, they're not little for very long are they and time sure does fly.
If you've been watching my videos, you'll no doubt be aware that I too am suffering terribly with muscle weakness (and pain). I try continually on a daily basis to keep strengthening my muscles by doing PT exercises (you can learn these using CZcams) but as well to generally keep moving about. Unfortunately though, it's not the muscles at fault, more the wiring (damaged nerves).
I CAN TOTALLY APPRECIATE YOU FREAKING OUT about the prospect of having a Lumbar Puncture!! I WAS TOO !! There was nothing anybody could say to me to calm me down, I WAS SCARED! I didn't want anybody poking around near my spinal cord, what if they made my problems worse. Like you, I was really scared.. but it was the only way to find out for sure what was going on.
It's sounds like you've already watched my video on the procedure when I had it done, but if not I've leave you the link below for you. IN ALL HONESTY it's really wasn't as bad as I though it was going to be, I hardly felt a thing because they numb the area first. It's unfortunate they won't give you something to calm your nerves before hand like they did with me, I will just say though I seem to recall Diazepam tablet just made me feel a bit tired, it helped but I would say now it wasn't a great benefit.
YOU CAN DO THIS!! It will help you tremendously knowing exactly what is going on, I find that is often half the battle.
I'm not sure where about you are in the world, but I really do wish you well.
I'd also be very interested to know how you get on, I know it's easier said than done, but take it from somebody that knows.. the procedure is not as bad as you think. However, I also know that consulting with Dr Google actually won't do your anxiety any good either. I seem to recall I made the decision to no longer look up the procedure (online) UNTIL I'd actually had it done. It was the right thing to do.
Take care, and I look forward to hearing back from you, but having said that I'm not putting you under any pressure what-so-ever. Only if you wish.
Please take care, and know that I'm sending healing thoughts your way. - Neil.
Here is a couple of links to videos when I had my Lumbar Puncture procedure:
czcams.com/video/ztxxtTOzBFM/video.html
czcams.com/video/LmpvnIguRME/video.html
Hi Neil & Teresa , its so good to hear from you , I have been wondering how you were both doing. I'm so sorry you havent been feeling well , the heat hasnt helped things im sure , I know my health suffered with the heatwaves that we were having. I also had swollen ankles when it was really hot so i can relate to you with the swollen feet , its very uncomfortable isnt it.
Are you still taking the rituximab ?? Are you finding that this is helping at all, will the consultant be looking at other things that they could perhaps give you medication wise ?? I hope the steroids have provided some relief.
I understand things have been difficult , please try to reach out to us here on this channel , were here to help give you support.
Things have been manic at my end too , my health has been the usual ups and downs, my mum had a nasty fall on the jubilee weekend and ended up with 2 fractures , shes just come out of hospital a few weeks ago , and still is in alot of pain so ive been busy looking after her as well as myself.
On a seperate note, hows the kitchen , i remember from your last video you were going to get work done, did this go ahead, id love to see the new kitchen, maybe you could do an update video on that when you feel up to it :)
I hope things get better for you Neil, sending you both much love , Grace x :) 🙂
Hi Grace, how lovely to hear from you.. as always.
I don't feel the Rituxmab has helped with pain or symptoms, but having said that it is a preventative medication so it's keeps my immune system suppressed in the hope it keeps the attacks at bay. But having said that, it doesn't seem to have worked this time, because as I've described in my video there is no doubt in my mind I've had an attack. Non of these treatments are a 100% though, but we have to try I feel.
I'm terribly sorry to hear about your Mum, two fractures! It must have been quite a nasty fall, I do hope she's well on the road to recovery.
Oh the Kitchen is all completed now, has been for a while.. maybe in the next video I do I'll include some footage. We love it and are extremely pleased with it, thank you for asking.
Take care 🦋❤️
@@NeilBradleyMS Thanks for sending your well wishes, mum did have a very nasty fall, shes getting better slowly but surely. Glad the kitchen is done hope to see that footage .
Keep on fighting my friend, sending you good health vibes as always.
Take care, Grace 🙂
HI Neil, it's been a long time since you've done an update. Are you and Teresa doing okay?
Hi Steve, good to hear from you. Yes, it's been a while hasn't it. We're not too bad, but I do feel like my mobility, pain & weakness is just spiraling downward out of control and there doesn't seem to be anything I can do about it, no matter how hard I try. Each day, I try and keep up with some physical therapy exercises I've learnt off CZcams to try and strengthen certain muscles, just when I think something good is happening and I'm making progress, I CRASH big time, it's so demoralising. I wish I had better news, but this is just how it is. Pain killers are absolutely useless, I find myself just having to cope with the 24/7 pain and discomfort.
I do hope you are doing better than myself Steve?
I would love to do another video, but I'm just lacking the much needed motivation at the moment. You take care - Neil.
@@NeilBradleyMS I am sorry to hear that things have not been letting up for you because it must feel really disempowering. Pain management is not the best for chronic pain and I hope the doctors can present more options when you see them again. I'm glad you still try and and keep moving with exercise to keep maintaining physcial conditiion. I hope that things pick up for you quickly, Neil. My RRMS has been stable for a while now (touch wood) and I continue working, so I consider myself very lucky right now - thank you for asking. Both yourself and Teresa will remain in my thoughts and I wish you both all the best. Take care, too.
@@stevo6969 Thank you Steve, it's good to hear back from you. I appreciate your kind thoughts. I'm pleased to hear that your RRMS seems to be behaving itself and that you're still able to work, that's very positive. Take care, and all the best.
By the way, my condolences to you & your entire country on the passing of your Queen. Although I'm an American, my mother & paternal grandparents were Canadian, and Canada is still very much loyal to the Monarchy. I watched Prince Charles & Princess Diana's wedding, as well as Andrew's, William's, and etc! More Canadian blood in me than American, going back to Ireland, Scotland, England & France, but that's more info than you needed, LOL!
Really wondering if the Monarchy will continue. I never dreamed Charles would be crownec. Not after his scandalous divorce and remarriage.
PS my mom named her kitten Camilla, not to be confused with our foolish democratic Vice President! 🙄
Hello. You are the most adorable couple. Blessings. In loving, friendship. Melinda H.
Hello Melina, thank you for your lovely and kind message.. it's very much appreciated. My apologies for the late reply. All the best to you - Neil & Teresa.
Glad to hear from you Neil & Teresa, I have been thinking about you both I was planning to contact you but I apologize I just did not get to message you. Neil you look tired (Don't take it personally my body has been feeling like it's tired and I can't do things either) I do get sleep some what but my body just feels like I can't do things. I don't even feel like typing but pushing to type. But anyway this steroid (I apologize if it's not a steroid I thought it was) but is this IV medication new for you to see if it gives relief for you? How do recive it once a month or more in a month? I doubt it a yearly IV medication. I really hope this IV medication will give you some type of relief from pain. I know from experience myself the medication would work for a little bit but my body would eventually reject it and back to square one in pain. Have you heard from Ryan? The last time when we were messaging each other about Ryan I did make contact with him I assume you did as well. Please you both take care I and Logan are thinking about you both 😉🙏
Neil I know it's long what I typed to you
When ever you message me back it's fine I will be on the lookout when you do,
I understand about not feeling good.
Take care ❤️ Amanda & Logan
Always lovely to hear from you Amanda. I hope you and Logan are as well as can be.
The treatment I received which I talk about in the video is Steroids delivered intravenously. The way to look at it is it’s emergency medication when your having an attack of sorts.
The last time I heard from Ryan was on Messenger when I contacted him on May 11th. He replies saying he’s not opened his phone in 26 days. So it’s a good 3 months. Truth is I’m worried about him as well, but don’t want to bug him and appear I’m hassling. I do hope he’s ok. If you hear from him, please do let me know.
Take care. xx
@@NeilBradleyMS Yes Ryan told me that also that he hasn't been on his phone that much. I hope he is not depressed or anything like that. The last I had spoke with him too which was around the same time you talked with him. I have not seen any posts or messages from him. I and Logan are doing fine I have been a little rough lately with my pain it's behind my head and goes down into my spine it also is affecting my arms and hands and also my legs and feet. I feel like I don't want to move but I have to. Logan is first starting school on September 6th for the 2022-2023 school year he will be staring 9th grade I can't believe it time goes by so fast with kids. Yes I do know you are having hot days really bad heat try to stay hydrated and keep cool. I know weather plays a part in pain hot or cold weather wind or rain or snow (Which I don't want to think about snow🥶) Can play a part in having pain it happens to me all the time. I bet you too. If I hear from Ryan I will message you and do the same for me. I will keep you and Teresa in my prayers like I always do. Take Care - ❤Amanda & Logan
Good morning Amanda. I thought I'd let you know that this morning when I awoke there was a notification from Ryan (Aimless). He's left a message on my latest video, it was really great to hear from him (I said I'd let you know when I did).
You may be able to find his message, but if not he goes on to say he's not been around for a while and hasn't even gone through his own messages on his channel community. He could possibly respond with a video, which would be great.
So, that's good! I hope you and Logan are keeping really well also.
Take care - Neil. x
ps my son has just started on ocrevus.
That's good! Ocrevus is one of the newer, preventative drugs.
i am so worried about my son. diagnosed age 12 relapsed age 15 i thought a relapse would happen when he was in his late 20,s early 30,s is that something i should be worried about please?
Hi there, my apologies for the late response. I'm terribly sorry to hear your son has an MS diagnosis, and at such a young age as well. I can see from your other comment he's on Ocrevus which, I do know is one of the very good Disease Modifying Therapies, so this should help significantly in staving off the attacks (relapses).
As for your question, I'm afraid nobody really knows, it's impossible to predict and MS is so very random. As I mentioned previously though, it's important he's on a preventative drug like Ocrevus, so knowing you're doing everything you can to help prevent a relapse should help with the worry a little maybe.
@@NeilBradleyMS Thank you for your reply. Hope you feel better soon. He has had his first dose of Ocrevus so fingers crossed,
You’re so welcome, I do hope your son is doing well. Difficult as it is to say, but I feel I have to say, try not to worry. 🙏
Your wife is a beautiful person 🙂
Hi thanks alot Neil for your information
I have been progressively get worst over the years it took me over 13 to 14 years to get a diagnosis
I have been going from one doctor to a next searching for answers
So I finally get a diagnosis in January of this year by a neurologist
So I am on 50mg prednisone
Question is one of your side-effect sore tongue
It is a lot of back and leg pain and off balance so I use a Caine to walk
With fan a/c or change in weather cause another more pain in my legs
Hi Deloney, good to hear from you. I’m please to hear you’ve finally got a diagnosis, although it’s probably not what anybody wants to hear. Do you mind my asking have you been diagnosed with MS, or NMO?
I started in 2019 on Prednisolone 40mg, and I’m sorry to say it didn’t take long for the side effects to kick in. And yes, a sore tongue is definitely one of them. I found that a kind of white/creamy film would build up on my tongue which had a nasty taste also. Very unpleasant.
I can very much relate to your balance issues too.
I do hope you’re managing your symptoms ok.
@@NeilBradleyMS Hi to you both I really appreciate you both sharing it is a source of strength to me especially knowing that there someone out there with similar issues like me
I am diagnosis with NMO
Yes sore tongue and white stuff build up on my tongue
I also have bowel, balddar and digestive issues it just mess with your body and organs
I can relate to the back and leg pain it is constand and stiffness
Thanks much for replying
I am struggling but fighting and praying
Please do the same
Take care
Hello again, I’m sorry to hear you have an NMO diagnosis. I too can relate to everything you have said, bowel and bladder problems, stiff muscles, leg spasms, I’ve also got lots of constant pain which prevents me from sleeping. Know that you’re not alone, I too am struggling and also often find myself praying 🙏
As a side note, I feel I should also make you aware of the long term visual side effects of prednisone that the Dr’s often fail to tell you about. I suffered very blurred vision, and now after having perfect 20/20 sharp vision all my life and never wore glasses, I’ve got the start of cataracts at 50 years old. Not impressed.
I don't know why I come back here when you never take my advice but I did and you are sicker than ever. Perhaps now, when you truly think you are out of options, you are ready to discuss the alternative option I gave you in the past? All I ever wanted to do was help you. It's time to break free of your faith-based reliance on a broken system and transcend your current programming. There are options open to you yet if you care to dive deeper.
I'm sorry it appear that I've upset you by not trying out your suggestions and recommendations.
However, I seem to recall in previous conversation with you, I've tried to explain it's impossible to try absolutely everything people suggest to me.. different diets, medications, supplements, exercises .. the list is endless. I hope you can appreciate this.
My apologies for the late reply.
I am confused why they give you steroids....not great for you
Hi Michelle, I know they're not good for me but high dose steroid by IV is the only option for me now when I'm having an attack (relapse).
Hi Neil so sorry to see you like this mate. I have been struggling with my Primary Progressive MS had it over 22 years took until 2016 to get diagnosed. I hate the heat, my feet are so painful i could cry. I just lost my lovely companion my dog lucy who i had for 15 years, and sprialled out of control. I am like you right now cant be bothered with it anymore, waking up with pain fatigue and despondancy.
at least you can still drive i am housebound. I have noticed now just doing a little job or standing is too painful. ask for SATIVEX. it should help you.
Now on top of the MS I have had heart issues march, now got further issues which are being investigated. I so get where you are BUT what you have to focus on is the good things you have in your life. Your blessed with the love many never get to have. You have a lovely home and garden, you can still drive. I know your in pain believe me. BUT YOUR CHANNEL helps so many people as we walk along with you on our journey. DONT GET too despondant, you have still got a life, many havent.
Give your lovely wife teresa a hug your a lovely couple. If you cant do the channel let teresa do it for you. xxxxxxxxxxxx your two sides of the same heart anyway. xxx
Hello .. it's lovely to hear from you once again, as it's a been a while. I'm subscribed to your channel and every now and again one of your Hedgehog videos pop up so I have a quick look :)
I'm terribly sorry to hear you've recently lost your dog Lucy, this must have been so painful for you. Know that I understand, as my wife and I have been through the same thing with both our cat and dog in recent years. They are such a blessing aren't they, and keep us company.. more so for yourself being alone.
Yes, waking up with the pain and fatigue before you've even started your day .. it's so depressing, I often just can't be bothered with it all. I do understand, I hope things improves for you.
The feet, oh yes .. all I can say is "I get it" my feet are insanely painful too, I'm always rubbing them as they are numb and hypersensitive. I also find them incredibly painful when they are cold (which they are a lot) but it seems to be worse some how. I know what you mean when the pain can just reduce you to tears, I do understand.
They won't give me Sativex, in fact my Consultant has literally this last month or so tried to get it prescribed for me. But it's for MS patients only. You see, I've recently been re-diagnosed recently with NMO (Neuromyelitis Optica) which is just another auto-immune disease, rarer than MS and a little more sinister. Quite often, people with NMO are diagnosed with MS first because they are so similar.
Thank you for your positive comments, I do try my best to use distractions and focus on the good things which I do appreciate I have. It's often very difficult nevertheless, because as I'm sure you know when the pain and disability rank up it's so hard to enjoy anything.
Sending much love and healing thoughts to you - Neil & Teresa. xxx
@@NeilBradleyMS hi it was hard hun. i came on to see how you were.
not done videos as the weather is vile and i cant afford to loose my wild life camera hoping it will get better in a few days but is always the same.
Try your best contact me
I'm not sure I understand Dee, I am in contact with you .. right now in fact as I write this message. I'm not sure how else to respond.