RITUXIMAB - BEFORE AND AFTER #1: Comparing my mobility | Neuromyelitis Optica Treatment (NMO)
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- čas přidán 20. 07. 2024
- #neuromyelitisoptica
#nmosd
#multiplesclerosis
#ms
#chronicillness
#pain
In this video I'm using footage recorded with my security cameras to compare my mobility on different dates, both before and after having Rituximab on the 15.06.2021.
So far there isn't a great deal of change, but I've only had the first part of the treatment. The 2nd part is tomorrow, on the 29.06.2021, but then it's my understanding that I have to wait 4 - 6 weeks whilst it kicks in and supresses my immune system. It is then the hope that the obvious inflammation in my spinal cord (caused by my immune system) will start to get better, and my mobility should improve IF it works.
Only time will tell.
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🤒 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)
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I really hope you are gonna do better!!!
I love you guy's garden so much. When I had my surgery, i'll start gardening again.
Lovely nails , Tree!
Lita
Patience and so much hope! I wait for each video and hope to see you are doing better. I love you guys!!
I'll keep my fingers crossed and hope that soon after your second dose you see massive improvements. Hugs and prayers sent your way daily from across the pond. Take care!
Prayers that the treatment helps soon.❤️
Love your videos.
I can clearly see you struggling in both videos, but I also see your strength. How wonderful are you for taking care of the birds. You have an amazing heart. I pray you see improvement soon. I will keep you both in my thoughts and prayers. Hugs to you both.
Thank you so much. Hugs
Hi Neil and Teresa!! So nice to see you 😊 Really appreciate the updates you are giving everyone. I think maybe give the treatment some more time to kick in. Don’t get down. Praying and hoping that this is gonna work and help you 💖 Looking good both of you 🥰 You are in my thoughts and prayers!! Much love 💕
Thanks Kelly, yes it’s early days yet with regard to the treatment, and of course we will keep you and everybody posted.🥰
Incredibly well designed video! Framing it as a comparison was very clever 👏👏👏 Hope the new medication will work out better than the previous ones and you get the peace of mind that you deserve. Hugs and lots of love to you guys! 🤗❤️
Hi to you both! My experience with Ocrevus for MS, is that I saw no difference at all with my walking until possibly the past year (currently on my third year of the med). And even the improvements I've noticed are not a huge deal. But I do think it has slowed progression of my MS. Hang in there Neil, you are not alone in what you are experiencing! I can totally relate to needing all of my concentration focused on walking, and how exhausting it can be. Take care, sending love and support💌
Very nice video guys, great idea! To see improvement in your/our mobility is such a wonderful "shot-in-the-arm". It's like hitting the jackpot! I hope next time around you'll be pleased with some improvement. Take care you two.
Thanks for the comparisons. I hope that the Retuximab will kick in and you feel stronger soon. I’m sure your muscles will have to be reminded how to do their job etc. Sending prayers and love for you. 🇵🇹💖🇵🇹
Stay positive. You'll get there.
Can’t wait to see you running around the garden Neil! Great information/introduction Teresa ❤️ Great split screen comparison 🤞Fingers crossed for an improvement soon. I can definitely relate to your comment, I could trip on a match stick! Garden looks beautiful 👍🏽
Thanks Nic.
Neil and Teresa thank you for this wonderful video.
Neil I hate to see you struggling to walk, your determination is evident when you feed your birds.
You are too precious for words. 😘🥰
Thank you, you are too kind 💕
I'm really interested in seeing the comparison videos.seeing yourself on camera is a eye opener.when i see myself on the ring camera I think is that really me.yes it is.
Love the nails Teresa.wheres that lush wig?
You make me smile on a shitty day
It's only been a couple of weeks. Give it time. As you know some medications take a bit to work. You are an inspiration to a lot of people and you both certainly help me by sharing your story. I got 2 new kitty videos to give you both a smile.
Sending you both lots of love and hugs ..as always 🙏💖🤗
Your garden is so lovely, no wonder you enjoy being out there. Hopefully you will improve your walking over time. Hugs and prayers for both of you! 🤗
Thank you so much Kathy. 🙏💕
I gotta say, Neil. I think this comparison video is absolutely impressive! It’s so good it’s hard to ignore because it real and unique. You put in so much effort into making them bless you. Huge respect to u my brother! 💙🦾 I hope that all the compassionate neurologists from around the world who stumble upon your channel are paying close attention to u. You’re a hero because you’re helping them to understand your medical condition better so they can potentially help u and others with similar condition. I pray a good neurologist sees your videos and gets in touch with you and Teresa. Medicine is evolving as we speak so never lose hope. Maybe one day it will happen because they’ll find a brilliant solution to help you get better sooner 🙏🙏♥️♥️ AMEN!
Thanks so much Patrick, for your kind words and inspiration 🙏💙
Prayers sent your way.
Neil and Theresa, it is always so good to see your faces. I guess I can only say to give the new medication some time to work. I am so tired of trying to be patient with this damn disease, so I am not telling you anything you don't know... just wishing the very best for both of you!
Thanks Cynthia, take care.
"hearting" and "liking" is perfectly fine, guys. I'm glad you brought that up in this video, because you never know, some people may be offended if you didn't respond at all. Now, they won't be. Good move. In fact, all your moves are looking pretty okay to me from this end. I see how hard you try, both of you, to keep up the good fight of faith and hope. You encourage me. Thank you.
Thank you so much Elaine.
Hi Neil and Therese, Thankyou for shareing❤🇦🇺
Hi Elisabeth, you are so welcome. Thank you for your message, I hope you’re well. ❤️🙏
Oh team! I really hope that things improve for you! Small victories are where the wins are at with this disease. I am always inspired by the two of you sharing this journey together. Lots of hugs from your buddy across the pond!
Thank you so much. 💕🙏
Hello again, I didn't realise you have a channel ! I've just subbed to you and I'm looking forward to checking out a few of your videos. All the best.
@@NeilBradleyMS Oh dear! I am DEFINITELY not as polished as you! You want to think about my channel as a vlog. It allows me to see me in snapshots in time. My challenges are really with cognitive issues. I have a lot of damage to my brain from this darned disease. Enjoy my nonsense and know that I am not near as good as you are!
Ahh bless you, it really doesn’t matter how polished your videos are. When I did my first video back in 2016, I knew NOTHING about shooting video, or editing. But over time I’ve taught myself and found that I very much enjoy the whole process, time consuming as it is. I treat it as a hobby, and like anything I suppose if you do it often enough you just get better and better.
Love and hugs to you both ❤
Lovely to see you both again 😊 very best of luck for tomorrow, I hope it goes well for you and you manage to have the infusion in the chair rather than the bed!! Looking forward to your next video….. take care guys 💙✨🙏🏻
Thanks Stuart, unfortunately it was on the bed.. I hadn’t got a choice in the matter as they were very strict with regard to this. It is however for my own safety so I do understand.
@@NeilBradleyMS Ahh right I see yes that’s fair enough. Fingers crossed 🤞 for you that the treatment is a success and you can feel the difference, I know it may be a few weeks before you’ll know though. I hope your lovely Theresa made you your favourite curry for tea after your treatment haha…. As ever, love and positive energy to you both, take care 😊🙏🏻
Good luck Neil am praying for you . I hear that Drug Treatment. Takes 6 to 8 months to kick in. I think your walking isn't bad. I like your back yard. I think your blessed to have a wife who supports you. Having a wide base quad cane might be helpful. Good luck on your new treatment.
Thank you so much.
Keep walking, build up your muscles, it takes a few weeks to kick in and at least it’s not progressive like MS, have patience, It’s going to take up to a month to make improvements, and with Ocrevus, which is very similar, it took up to a year to get the full effect. You do look taller, in the after, like your posture is better! Stay a Warrior 💪💪🙏🙏🧡
Hi Andrea, thanks. I just wish it wasn’t progressive, unfortunately it is and in a significant way. I’m never going to regain everything I’ve lost, but hopefully a small percentage. Only time will tell I suppose. I hope all is well with you. 🙏💕
@@NeilBradleyMS I researched it, and it is not supposed to be, hopefully they didn’t misdiagnosed you again, either way I am praying for every day, and keep pushing on! I am praying for you and Teresa, she’s so sweet, thank goodness you have her by your side, much love to you both, sit in your garden and get some natural vitamin D, keep us posted, after my infusions, I find O need more sleep for about a month, so get good restorative sleep 🙏🙏🙏
Also after my first year on the infusion, and taking Ampyra, it’s been a miracle to me, as I am taking full time care of my bedridden mom, who just had 3 strokes, it’s exhausting, but I wouldn’t have it any other way. Try Physical Therapy after a few infusions, my PT doc knew all about MS and he said I had let my muscles atrophy, he whipped me back in shape, it was not easy at all, many times I wanted to quit, but he pushed even harder, so after that, my mom had stroke 1, then stroke 2, then a bigger stroke after that, maybe it was God telling me to not quit, because it helped a lot! I am just trying to boost you up, stay positive, talk to God and have faith! I will never regain what I lost either, but I have faith, one day they will find a cure, God bless you, keep smiling 🙏💪💪💪
Hi Andrea, yes I love sitting in the garden and getting that natural Vit D .. in fact today is the first day in quite some time we've seen the sun in the UK even though we're officially in summer. As for my new diagnosis not being progressive, well who knows! All I know is ten years ago I was at full power, and now I struggle walking to the kitchen and back. If that's not progressive I'm not sure what is. I too often think have they got it right this time?, but honestly I'm not even sure. NMOSD is considered a branch off of MS, in fact about ten years ago (or around that time) it was simply be considered MS, but now there's more research and names given to these 'MS branch off' conditions NMOSD being one of them.
Have faith, and chin up!
Hi Neil & Tree , its nice to hear from you both. I know exactly what you mean about having to concentrate on walking, im exactly the same, I always walk with a crutch real slow (due to stiff , weak body , and painful knees) , and I find im always looking down to the ground because my feet are numb so I can't always feel properly where im stepping (if that makes sense lol !). What problems do you have specifically when walking, is it balance or pain etc ??
Its good that you're filming your walking, as this will really help you to analyse & compare progress. Stay positive , its still early days yet , and i'm guessing the improvements will happen slowly and gradually. Fingers crossed you start noticing some positive changes soon .
Ive noticed that in the first video although you're walking slightly slower, you're steadier on your feet, whereas on the second video you're walking a little bit faster, but slightly wobblier , i'm not sure if this is what you've noticed , obviously you know your body better than anyone else.
Take care of each other , stay strong , Grace :)
Hi Grace, thanks for the message. In answer to your question, my wobbly walking is driven both by weakness and pain. But I’ve found when I’m not in quite so much pain, the walking does improve slightly. Take care.
Bless you both, I’m on Ocrevus and was told it might take a couple of full doses to really work. I’m still relapsing regularly, but hey ho! Have faith, be positive, it WILL get better I’m sure. Keep smiling. Have you ever tried intermittent fasting? 😘 ❤️
Hi Carole, no I’ve not tried the intermittent fasting, but I have heard about it. Take care.
Unfortunately medications take time to work. Thank you for doing these comparison videos.
You're so welcome Kerri, glad you find them useful.
Hi Neil. May I ask if you have tried any alternative healing modalities or approaches to address your MS? Did any of them have any effect on your condition?
Hi Michael, the only alternative thing I have tried is CBD oil. However, having spent quite a lot of money on this product I found it didn’t work at all for me not even a little bit. I hope you’re well.
Hi , can you go out and about when you've had the treatment ?
Yes, but as Rituximab is an immunosuppressant it’s a good idea to be extra vigilant especially if you’re around people who are unwell. Due to my poor mobility I rarely go out, hence I don’t really catch much.
Neil don't freak out I think once you get the second treatment the Retoxama ( I know it's not spelled right the medication) I think once you have had both doses of it you will see results don't give up you will succeeded With walking I know you are not use to but it's like you have to retrain you brain on how be phyisical again on how to walk, move around which when I or you think about it yes it is a big step forward try not to let it get to you give it time it will just come naturally to you. Don't over do it I know falling can be scary and don't think about am I going to fall again then you have that to think about that plus trying to take steps also. I am Hoping and Praying for you It will work it will just take some time I believe after you have both doses of the treatment and by the way I liked both of your same T-Shirt I felt like I was looking at your twin brother☺🙏❤ it's ok if you can not get back to me I know you have alot going on just take it easy and don't give up think POSITIVE Tell Teresa I said Hello to her too. ❤ Amanda
Hi Amanda, thank you once again for a lovely message. Yes, always trying to stay positive. I hope all is well with you and your son, all the best. 🥰
@@NeilBradleyMS Hi Neil good to hear from I see you posted this about 10 hours ago I just really got on CZcams now my apologies but yes I and Logan are doing good thanks for asking and the same goes for you and Teresa too Is it two weeks this Friday that you will be going into your local hospital for your second treatment? I am hoping and praying to the stars that when you have the second treatment it will start to give you relief I don't really know how it will work once inside you (The Second Treatment) but I don't know how it will be once the second dose will fully be in you and neither do you but I would assume that you won't notice a difference right away although I pray that you will but most likely maybe when you are up moving around would be more likely but we're you told by your medical professionals that having the second dose it might take some time for now both of the doses to kick into your body? But I and Logan have you both in our hearts and prayers just keep that on a positive note
Stay safe and take care to you both
Amanda & Logan ❤❤❤❤
Good Morning folks, keep your spirits up ! It’s really difficult I know. Update on the Frampidine , I would say it’s worth a go if you can access it I would say I was possibly over optimistic of the outcome but I would say I do feel different 🤔 with some general improvement in the condition but as you well know it’s a take it day by day situation. I had a consultation with my Neurologist & discussed Siponimod & Gilenia which he reckons are pretty toxic & work by blocking the Immune system B&T cells from causing further lesions on the brain. Unfortunately if you stop taking it the suppressed Immune cells can cause further problems, which is possibly causing some of your issues during the change of meds 🤨
Oh! I’m not a medical professional just a client 😂
All the best to you both
Thanks Gordon, really appreciate you coming back to me with the update on Frampidine.
@@NeilBradleyMS keep battling on 👍
Hello Dear Friends,
I’m sure it will take some time to see the outcome of the infusions. However stay positive and hopeful. We are in a terrible heat wave, no end in sight 105, 112 etc, triple digits! My gait is affected when I’m hot. Do some strength training exercises too, we need to keep our muscles strong 💪.
Thanks Jane, and wow they are seriously hot temperatures you take care.
Hi Neil and Teresa. I'm glad to see you got your 1st dose of rotexim. Like I have experienced with Ocrevus is it's not immediately that you'll see improvement it takes your body a little bit to see how it will effect you. You'll just have to be patient and wait. I know that's not what you want to do right now but it's true. Your body's got to figure out what to do without attacking itself and now try repairing it with very little immune system to do it. I find if I get a cut or anything it takes a long time to heal for an example. However if it has what Ocrevus has which is human DNA helps to replace your damaged nerves Mylan sheath that cover the nerves or create new pathways to travel. I'm on my 5th year every 6 months and I am still walking and am still independent and just went to my son's Graduation at a stadium outside and I'm doing okay I didn't fall or anything. Be patient my friend everyone gets different results but it will happen. I'd like to give you some advise about being immune compromised. I learned it the hard way. Wear a mask to protect yourself from getting even a cold or anything. I didnt where a mask because I wasn't told and I ended up in the ER because I couldn't breathe from a cold and now I have asthma back after 35 years. Just be careful about getting any infection because you can't really fight it off. This is not to scare you or anything but I'd rather you learn from my mistakes. I just didn't know. I didn't really understand how easily I could get so sick quickly. I felt good and i just forgot I was sick you know? Just keep positive because I could swear your attitude towards your recovery does effect the outcome. I wish the very best for both of you. Stay safe and be well. 1st dose went well so you should tolerate others well too. God bless you both. And may Angels watch over you my friends. Peace.😇😇🤗🙂💕
Thank you so much for your kind words, and I have taken your advice on board. Unlike you I have completely lost my independence now that I am so immobile, however as you say it’s important to be patient and let the medicine do its thing. So, let’s hope that in a few weeks time I start to improve. Once again thank you for your lovely message. 💕🙏
I was going to add to my comment, but there doesn’t seem to be a my comment anymore.
Hi Ryan, I put a message on your community tab explaining I saw your message come through as a notification, but when I go to read it, it was gone. I’ve been having this problem a lot whereby CZcams seems to be flagging comments as spam when In fact they aren’t and removing them. I’m sorry I was unable to read all of your first message.
@@NeilBradleyMS I think I know what you’re talking about. There are some comments on some of my videos that were labeled junk or something, which just kind of vanished; comments I knew weren’t junk.
The way I see it, all disability is caused by pain. People who are disabled, like you and me, have a much higher tolerance for pain than [most] people who say they’re in pain but can walk. The pain may be caused by some neurological crap, but there is no drug that can reverse that, and there never will be. However, there is medicine that can decrease the pain.
Hi Ryan, I agree with you .. pain is a very large and significant driving force behind the very poor mobility. However, I've come to realise something else is also happening behind the scenes with me, and I've proven this time and time again in my past videos.
When I have high dose IV Steroids, something amazing happens, my mobility improves!! Seriously! This is because, the steroids are reducing the inflammation in my spinal cord which my immune system is causing. My immune system is malfunctioning and attacking good tissue.
Because it's not good to be on steroids long term, the theory is to suppress my immune system by targeting it in a certain way, this in turn (hopefully) should stop or at least slow down the inflammation and allow my spinal cord to heal a bit, providing not too much damage has been done. The Rituximab (treatment) is going to be a bit of a more long term treatment that is not steroids if you see what I mean.
I feel I've got to try everything that is available to me, but sometimes I do just feel like giving up because it is incredibly stressful which I'm sure you can totally appreciate.
There are definitely two things going on here though, inflammation and as you quite rightly say the pain. I feel my threshold for pain must be quite high by now, because I have tons of it every day. I've discovered Oramorph (basically Morphine) REALLY helps take the edge off the pain, and once the pain has reduced I can in fact get about a little bit better. I do take too much though which is not a good thing, and I'm well aware of how addictive it can be, but sometimes we're just left with no choice. Even as I'm typing this message out to you on my PC, I'm in quite considerable pain, it would easier to tell you what doesn't hurt than what does.
Always really good to hear from you mate, and I know how much you're struggling at the moment, and not being able to transfer on and off your chair (I monitor your channel and comments). This must be really hard not only physically but tough on you mentally as well. Difficult as it will be, but seeing a video from you would be awesome. Even if it's only a few mins, unedited just to let people know how you're getting on. No pressure though.
Take it easy, and the best.
Neil, you appear to be more stiff in the after video, and juddery. At least in the earlier part of it.
Then in the latter part of the video you looked more stiff and juddery in the before part. If that makes any sense.
All the best for the future.
Hey Alan, good to hear from you.. thanks for the feedback, a few other people have said similar interestingly.
Neil I hate to say this but dmt, wont improve your health and mobilty, there basically made to stop progression of the disease, trust me everytime I start a new one I hope and pray for some results but they never come if you stay the same then it's working, I know its depressing but that what we deal with , I always hope the best for you and a miracle
Hi Chris, yes I understand how they work. However, with me it’s slightly different. My immune system is causing inflammation in my spinal cord, it shouldn’t be doing but it is. The theory is, suppress my immune system to slow down or hopefully stop the inflammation and this in turn allows my body to heal. So this is why I’m having the Rituximab. This has been proven to work with high dose steroids, when I have them I get better, I’ve done videos on this in the past. I can’t keep having steroids though, not good for me long term. So need something else, hence trying the Rituximab.
I know the whole concentration thing........ Brain is doing its best to work around spinal damage...... which it may do over time provided no more injury. Darn will you two try reiki, just try. Humor this Mickrout...
God bless you have faith 🙏🙏🙏 Neil you also could contact fb messenger
Thanks Dee, it’s best to contact me on here as I don’t do FB much. I have hundreds of messages come in that the channel generates, so I tend to focus mainly here on CZcams.
@@NeilBradleyMS I get confused replying here and CZcams and having problems I have to do two mri, I tried to get help for the copay because it's $150 each so I'm going to have to pay $300 my insurance told me to call community I forgot the name they gave me some different numbers I called and called I guess you're very frustrated
I'm doing the two MRI because the doctor thinks the medications the overs is not working properly because I'm having problem with my knees how I'm walking I don't hardly walk when I cane you say stick I walk with a walker
@@NeilBradleyMS Neil which one u take the strong one or weak i just checked it out here in you tube
About opioids
you shouldnt be walking without a frame like a rollator. put the food on the seat. You walk like PPMS. IMHO. I could NEVER walk like that without my rollator. i still walk but i have a sit down constantly. YOU EXPECT TO MUCH from yourself. If you have got MS then your doing ok. the point is walk safely you are not walking safely. i cant walk without holding onto something as i would fall straight away.
you expect too much from medication it takes weeks months, years for stuff to work. I was told by orthotics there is nothing left for me so get on with it. I would rather have a healthy auto immune and then just deal with the inflammation. Love the pink t shirt. your loosing a lot of weight.
why dont you get OT to put rails along both sides of your path? You have MS this is it hun sorry to say. rituximab i have not heard of one MSER have that treatment. You would have been better off with ocrevus but you have to get MRI and see if your MS is active.
Hi There, as a rule I always walk with a crutch .. but I test myself objectively each and every day. I KNOW I can do those short few steps without an aid, so I continue to do so each day to see if it becomes easier or more difficult. I realise being safe is the key here, I'm not ready for a frame yet.
I do not expect too much from the medication, I'd like to make that very clear! I know exactly how it works, and I always do my research THOROUGHLY prior to embarking on having the treatment. I am all too aware it will take weeks, possibly even months to start working and kick in, even if it does work at all. The point to these videos are for comparison purposes, so that later on I can look back in time and see how I was. Usually, if I improve it's very subtle so this is why I'm doing it.
Unfortunately because I have an auto-immune condition it is my healthy immune system that seems to be the cause of all my problems, .. it is causing inflammation in my spinal cord. I've proven this time and time again (many videos on my channel to look back on), because when I have strong IV Steroids they reduce the inflammation in my Spinal Cord and my mobility improves significantly. However, as you're probably no doubt aware being on Steroids long term is very detrimental to your health. So this is where the Rituximab comes in, the theory being it will suppress my immune system targeting the B-Cells in a specific way. Then, hopefully once the inflammation is reduce (or hopefully gone) this gives my body a chance to heal. I realise I'm never going to be back to full power ever again, but I would take anything even a 5 - 10% improvement, I'm sure we all would.
The other point I just wanted to make was, Rituximab IS basically EXACTLY the same as Ocrevus, but because I'm no longer diagnosed with MS (I'm now NMOSD) I'm not eligible for it. Rituximab has in fact been around for a lot longer than Ocrevus.. Ocrevus is kind of a re-branded Rituximab.
A subscriber on my channel explains it perfectly, I'll copy and paste his explanation below.
"Rituximab is "off label", meaning it is not tested vs MS... It was originally tested vs arthritis... It turned up to be a wonderfull treatment vs MS and was used for that for many years in some countries (UK/Sweden that I know of)... then at Rituximab's 25 birthday, the patent expired and anyone could make it and sell it for cheap.... So the medical company did a new test where it was tested against MS... After completing the "normal" 3 phase test, it was approved as medication vs MS and got a new name "Ocrelizumab/Ocrevus... It is now "on label" treatement for MS and very expensive.... Doctors can use it because it is tested vs MS.... Hovever, Rituximab is the same as ocrevus but a LOT cheaper...."
@@NeilBradleyMS it seems you have it sorted i meant no offence just have seen friends try to walk and end up flat on face in hospital with broken bones, it gives me an EEK moment. good luck with your continuing improvment.
@@hedgehogwildlifejunction9119 Thank you, no offence taken. 👍