Professor Appointment | Neuromyelitis Optica Spectrum Disorder (NMOSD) | Multiple Sclerosis
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- Опубліковано 10 лип 2019
- It seems that potentially, even though it hasn't happened just yet .. I'm going to be un-diagnosed from MS and re-diagnosed with Neuromyelitis optica spectrum disorder (A different auto-immune disease).
I would like to emphasise this has not happened just yet though, as it is subject to a couple of further eye tests to confirm Optic Neuritis.
This is a long video with a lot of information which we are still digesting from yesterday.
Thank you for watching, and for your support.
Dear Neil sorry to hear this sad news. My greatest fear has always been losing my eyesight since I have always had trouble with seeing. I hope you feel better soon and I continue to keep you in my prayers. Say hello to your wife for me. 💜
Hi Maria, that is now my greatest fear. I can deal with the mobility issue, well I don’t really have much of a choice really. But loosing my vision I’m very fearful of, it would put me in a very dark place and I wouldn’t be able to cope with it. I just know.
Looks like your getting answers finally Neil. Keep us updated x
Hi Neil and Teresa, I’m glad you got to see the top guy but sorry to hear your news and more tests to endure, but you’re strong, hopefully you can start some treatment. Think positive and stay strong. X
Thank you Carole.🙏
Hello Neil and Teresa, so glad you let everyone know how your appointment went. I watched the video the other night of the day before your appointment. I was in tears!! I heart ached just looking at your face when you were talking about not being there for Teresa....feeling helpless. Just to let you know, I think we all feel that way sometimes. But you will get through this. Not having answers is the worst, but I believe you are on the right road to figuring out what is going on. Whatever comes of this, you are not alone. You have a wife who loves you so very much!!It is written all over her face. Thank you letting us know how your appointment went. Please keep us posted. Take care Neil and Teresa💕 ( sorry for such a long comment!!) Your friend from USA😊
Hi Kelly, thank you for your message and it really doesn’t matter how long it is.😊 Feeling very helpless describes how I feel perfectly when I’m unable to be there for Teresa. We’re getting there slowly I think, although I feel the road is still long and bumpy ahead.
Oh wow, that sure is a lot of info to digest. What an emotional roller coaster this must be for you. But I am glad THE day finally arrived and you´re getting somewhere now. Not knowing is the worst. But of course I understand that you´re scared. I hardly know anything about the disorder, but hopefully there is some kind of treatment to slow it down. I will try to read a little about it one of these days.
Thank you so much for the update. Big hugs for both of you.
Thanks Rikke, the treatment is steroids and immunosuppressant medication to try and prevent attacks. Similar to MS but not DMT as that can actually make NMOSD worse!! Need to get the diagnosis confirmed first, apparently it’s common to be misdiagnosed with MS. Hmmm. 🤗
Dear Neil and Teresa, so much to take in and my thoughts and very best wishes are with you both as you adjust to this new journey.
Thank you Tamara. 🙏
WOW! I am so happy you were able to see the person you had hoped to see. I am just dumb founded, as I am sure you are as well. Your video was not at all too long, that is as far as I am concerned. I so enjoy hearing from you and Teresa, please don't stop sharing with us. All I can say at this moment is......WOW! Take care guys.
Thank you Lee, I just read your lovely comment out to Teresa. It’s so nice to hear you gain so much from our videos and fear not, we are not going anywhere anytime soon. I was a little worried if I was re-diagnosed I may loose subscribers, hopefully not. I hope your taking it easy friend. 😊
Glad you are getting some answers to your health issues, you both seem less stressed since your appt. Take care and know that my thoughts and prayers are always with you two.
Thanks Rona, we are pleased the appointment is now out of the way.. going anywhere these days for me is very challenging. It makes it difficult to look forward to go anywhere really. Prayers to you also.
I love hearing from you both and as always I look forward to you videos. I want so much that they find someway to improve your health and mobility.
Thanks Matthew, kind of you.
Thank you Neil for sharing your journey though the high and the lows. Looks like you are now heading down a different/new path. I hope now after the blood test there is something they can do for you. I don't understand your condition, but I know ms. For me I don't hate MS, it's part of me now. Some bad days or not so : ) pls don't think about it too much, otherwise is a downward spiral. Keep the UA-cam up, take care
Thanks Indie, I’ve not had an official re-diagnosis yet.. still waiting on some more tests to come through. I have researched MS an aweful lot over the years and I’m very well versed in its effects. NMO is kind of similar but I’m still learning about it. It still comes under the umbrella of auto immune disease. Take care.
So lovely to hear you were finally able to get some answers. However still not a great condition to be diagnosed with. Sending you both lots of love xx
Thanks Tara xx
A lot to digest.....hope you both get some rest. Sending love and support from here.
Thanks Karen. 🙏
Hi Neil and Theresa, I came upon your vlog very recently and today I have watched my way through your history. It has been informative and I hope you get a definite diagnosis. I will be thinking of you both and send you good wishes and good luck.
Wow Silvana, I’m so touched that you’ve watchEd all of the videos. That must have taken a fair few days as there is over a 100 now. Thank you so much. So pleased you’ve found them informative, I pride myself in delivering “real life” to my audience. Many thanks for your thoughts and support. 🙏
Hello Neil and Theresa, I am happy that you have finally gotten to speak with the professor and that he took time to review what all has been going on with you. I sure hope he can help you get the answers and treatment that you need.
Thanks Derick, I’ve actually a few seconds ago just responded to your Messenger message😊
I can relate! Same obstacles when going to the hospital! 🐌🐌 I’m on snails pace too. Good idea for the timeline! Take care! 🤗Hi to Teresa
Slow and steady wins the race. I’m glad you saw the Prof!
Thanks Nic, sounds like you’re not doing so good either if you’ve joined the snail speed race🤦♂️ take care.
Hi again, Neil and Teresa! Now wonder the video was so long. What a lot of information you've both been given, after the appointment with the professor. Although not confirmed at he time this video was made, I am glad that you have a name for it. I understand that lot of respiritory conditions just get labelled Astama, so at least your condition has it's own name.
Good morning Dean, the plot thickens even further once you’ve seen the video about the long awaited letter. You may have already seen this, hmm not quite so sure. They place me firmly in a grey area between MS and Neuromyelitis Optica for a while. Now though more recently my consultant is leaning heavily towards NMO but Seronegative meaning I’ve got all the clinic signs but my scientific tests all come back clear. I like to be complicated and mysterious. My intention soon is to do a video bringing clarity to my diagnosis.
Hello my friends!
Good to know you finally saw the Professor. Please don't give up. I know the possibility of it being NMO is scary, but just take it a day at a time. We're rooting for you.
And you are right about MS treatments not suitable for other conditions. I too have not started any MS treatment because I am not entirely convinced it will help. Some of my chronic symptoms don't seem to fit all the MS criteria either, so I don't dare to experiment.
My next appointment is at the end of the month. 🤷♀️
Thank you both for allowing us into your lives. I hope you get more answers soon.
Thanks Jay. I understand, when I was diagnosed and put on Copaxone for two years I’d just got this feeling it wasn’t doing me any good. The injection site reactions were just ridiculous so I packed it in. Thank for your support🙏
Keeping both of you in my thoughts
Thank you Nancy. 🙏
Hang in there. You certainly have put a lot of effort into trying to obtain a diagnosis. I applaud your diligence. Unfortunately, there are some people that will wait up to 10 years or more for a final diagnosis. I am on my 5th year and still waiting. I enjoy your videos and have learned alot. I know it can get difficult going through each day with a variety of symptoms but dont give up. I wish you all the best. Lots of love to you both.
Hello there, and thank you. It’s just terrible you have to wait so long, not right at all. So pleased you’re enjoying my videos and have taken something from them as that primarily is why I make them. Sending some love right back to you - Neil & Teresa.
Hi Neil & Teresa, I bet you’re feeling all sorts of emotions at the moment , especially as you’ve been thinking you had ms for all these years. I’m glad you saw the professor. I’m sure they’ll be able to give you definite answers once you’ve had all the tests that you need. Hopefully they can put you on some sort of treatment and stabilise or even improve your symptoms.
My walking is similar in the sense that when I’m out & about I also take about 10-15 steps then I have to stop for a breather before taking some more steps ....... it’s such a pain isn’t it 😠. It would be useful to hear about your timeline that you did . Take care both of you , Grace x
Hi Grace, and thank you. Your walking sounds very similar to mine, a few steps and a breather. Biggest problem for me is my back is always painful when taking steps, that’s half the problem. I will definitely do a video with regards the time line. x
I’m so happy that you have a little more clarity of what’s going on. Hopefully this will put you on the right track. I saw my neuro-ophthalmologist yesterday and my optic nerves look great! I have IIHS or Psuedo Tumor Cerebri which is another issue to deal with along with the MS 😣. I’m sending you happy thoughts and lots of positive vibes!! 🥰
Thank you, I’m not sure what “Pseudotumor cerebri” was so had to consult Dr Google😊 Wow, I’m really sorry to hear you’re having to deal with this on top of the MS. It really makes you wonder when we are going to be given a bit of a break doesn’t it. Sending some happy thoughts right back to you there Michelle. xx
Neil Bradley yes I frequently say out loud ok ok I’ve had enough now can I be done ☹️.
Hi to you both, Thankyou for shareing, I'm laying here watching your video going holy smokes, I notice this was done in July last year, how are you going with it all,I'm still catching up with all your videos, once again Thank you for shareing,watching from Brisbane, Queensland, Australia ❤🇦🇺
Hey Elisabeth, thanks for watching our videos👍😊 I was diagnosed with MS in 2013, but this last 12 months I’m now in the process of being re-diagnosed!! After all their scientific tests are coming back clear. I’ve documented this in the previous 12 months videos. Enjoy.
Neil - mixed blessings. These neuro things are awful. I’m
So happy you got to see the Prof. I’m off to see a Prof Silburn here in Brisbane. He’s a pd movement guy but I hope he can have an open mind. Mine isn’t pd - I’m sure of it. I keep you and Theresa in my thoughts daily. 💖💖🇦🇺Andrea.
Thank Murphy, appreciate it. The Prof was only a 2nd opinion and unfortunately I don't think I'll be seeing him again. Good luck with your visit to the Prof, I hope it goes well.
Hello....thanks so much for the update. I had testing done through Mayo clinic for NMO, so know all the fears you're going through. Since Tysabri was a potential....I had read the same thing, and thought it imperative that I get the testing done even though it cost me. Long story short, my NMO ended up negative, but not eligible for Tysabri due to my JCV test anyway. Bummed about that, but partially relieved, due to the risks and infusion costs.
I heard there's a new med for NMO in the states. Not sure how that is in your country, but the good news is they must be doing research.
Other people often also emphasize Lyme disease testing as well. You may have already had that. But may want to be sure if NMO is negative.
I hope you get quicker treatment/testing now, and I hope whatever you have is mild. I've been thinking of you and will continue to do so. You both seem like awesome, kind people, amd I wish you all the best. Hang in there. I understand how frustrating the waiting and the searching can be. I realize, unfortunately, it will likely be a lifelong thing until there's better understanding and treatment in general.
Hi There, and thank you for your message. I think the medication you may be thinking about is called "Rituximab" which is an immunosuppressant. I've done some research on this already and the side effects are scary. I'm not keen, especially if potentially I could be faced with hearing loss, further vision problem .. the list is endless. It's hard to know what to do, one step at a time I think.. I'm going to wait until I've had the official diagnosis and take it from there. Take care.
Very interesting!! So glad you saw the big guy. I had been thinking NMO when you were talking about your results. MS and NMO are overlapping in many ways. You are right, an MS treatment could have been devastating. I have Behçets along with MS, and Neuro Behçets can closely mimic MS. So I may one day too be undiagnosed! Haha. As long as we can find treatments to slow progression, no matter disease name, we are ahead of the game. Thanks for sharing Neil, look forward to you updates. Xoxo
Hi Laura, sorry to hear you’re having to deal with Behcets as well as MS. Makes you wonder when we’re going to be given a break doesn’t it! From the research I’ve done so far, NMO is treated with immunosuppressant meds, but the side effects are horrendous (hair loss, vision issues, hearing loss). It’s scared me senseless. I already have poor quality of life, where do you draw the line? 🤦♂️😔 Good to hear from you Laura, hope your managing ok. x
@@NeilBradleyMS I hear you Neil. I am actually taking Mavenclad for MS now. It's a low dose chemo. I was worried about side effects, but other than some sweating (minor) for a day or 2, it's been easy. So don't let the side effects put you off. Behçet's is also treated with immunosuppressants a lot of the time. Mine is mostly limited to my skin, so I take Colchicine for that, which runs the risk of neuropathy, but whatever! It's been absolutely brilliant for my mouth ulcers that plagued me my whole life, so it's a risk I will take. Behçet's can also permanently damage vision, so it's something I always keep in mind. All the best! xoxo
I really love both of you ❤
Sending some love right back to you Adam - Neil & Teresa. 🙏
You will be okey, Neil 🌞 You and Teresa are in my thoughts and prayers.
Please don't feel obliged to reply back to any of the messages I write to u here. I will not mind if u can't 🌳❤🌻 I wish to not burden you. When u are happy the less stressed u will feel and I know wen u are happy it will strengthen your immune system 💪 you will get better soon! take it easy my dear friend .
Regards Adam .
That is good
I am sorry to hear the gloomy diagnosis. I hope you have good insurance in the UK so you can stay on top of this disease and fight for your sight.
Hey Eliane, I didn’t know you were subbed to my channel😊 We have the NHS in the UK, so hopefully I’ll get some treatment once the diagnosis is confirmed. Thanks. x
Thanks 🙏 for posting this video, the lady in pink next of you she is very nice 👍
Thank you 🙏
And i am thankful you have each other.
Thank you Mary.
@@NeilBradleyMS you r very welcome.
Glad to see your wife♥️💖you both are beautiful people!
Thank you, that's very kind.
Surprise for you both im sure. But getting some answers that can b positive. Please keep us posted. We care about you both.
Thank you Mary, yes we will indeed keep you posted. Take care.
Dear Neil, I am so sorry to hear that the MS is out of your system now! Well, NMOSD is totally different to MS.
Both aren't funny, are they?
It scares me to hear that you could potentially loose your eyesight!!!
OMG! Did the Professor mention treatment options? Physical therapy or rehab?
Your walking ,as being so poor, is your biggest problem I would suppose. So try to find someone help you with that first!
This diagnosis, if you really get it, isn't a death sentence at all.
It is just a new autoimmune disease you have to deal with. just....hmmm... easy to say when not having it....oky, I hope you will find more answers to that!
Say Hi to Teresa! Sending you a big hug and best regards, Britta
Hi Britta and thank you. I’m not yet officially diagnosed as I’ve got to have some more tests. I did discuss treatment options, as usual with these autoimmune diseases there is no cure. They focus on suppressing the immune system to prevent future attacks. Also, steroids to help improve things in the short term (I think). I’ve done six months of physio and don’t feel I really gained anything from it.
I am going to write an email tomorrow 😍
Rituximab I think will be the new treatment if that diagnosis is confirmed . Hope you will have no attacks ever in future and everything will be just fine . Prayers 🙏🙏🙏
Thanks Fatima, are you familiar with that drug then?
Neil Bradley yes my friend takes it to treat secondary progressive ms and he keeps saying that there is loads of trials regarding Devic syndrome in USA. He also mentioned drug called Eculizumab
They can actually test for nmo with a simple antibody blood test. I had it done along with people that I know that have MS that were trying to eliminate possible diseases and get down to the diagnosis. Your doctor should have definitely ordered the blood test. Very simple to get the diagnosis without having to go to an eye doctor.
Hi, I need to see the eye Dr to confirm Optic Neuritis. And yes, I’ve done a bit of research also and discovered the blood test they can do. It looks for a specific antibody.
Take care
Thanks Michelle, you too.
Hi Neil/Teresa,as promised you returned with some updates. I know this is alot to digest,have you started to look at others here online who have uploaded how the deal with it. Any treatment plans and followup? It's not the news any of wants but a bit of relief in knowing. Hugs mate!!
Hi Avril, yes I’ve already done some research online. It’s very rare it seems. Treatment is steroids, and immunosuppressant medicine to try and prevent attacks. This can lead to other blood count issues though. I’ve not been officially diagnosed yet, as I’ve got to have some tests yet. But we shall see. Hugs to you also.
Well, more waiting then for you, but at least you have the top guy on the case now. My neuro is a professor, it instills a bit more confidence doesnt it?, in their diagnostic abilities. I hope you dont have NMO but at least if you do, you will have the Proper diagnosis. Hugs x
Thanks Becky, and yes I did feel a lot more confident with the Prof. The only problem is, I won’t be seeing him again as he was only for the 2nd opinion😟 I hope I don’t have NMO either, I kind of thought I had a proper MS diagnosis when I received it back in 2013. Apparent a lot of people are misdiagnosed with MS when in fact they have NMO. 🤗xx
Hi just started watching your videos .you say people don't usually get diagnosed with ms with just spine lesions ,yet your original Neuro diagnosis ms ,interesting .
Hi Susan, yes there right. It’s very rare for people to have MS without brain lesions and only spine. Interestingly, I’m now in the process of being re-diagnosed this last 12 months with a condition (not official yet) called. Neuromyelitis optica after having an MS diagnosis since 2013.
Hi surely a case for wrongful diagnosis ? You say you saw two neuros at Derby .(same hospital as me )it makes me wonder if the drugs you've been given could have caused you more harm than good x
Susan Hayes Hi Susan, apparently even though Neuromyelitis optica is a rare auto immune disease, it’s symptoms are very very similar to MS distinguished by only a few different factors. In fact, it’s commonplace (so I’ve read) to be diagnosed with MS albeit incorrectly, only later down the line to find out it was a mis diagnosis. Having said all that, all of these auto immune diseases require a lot of time and history of symptoms, sometimes years to be correctly diagnosed. I’m still not even sure they know what’s wrong with me to be honest with you. I’ve always thought I fit very well into the Primary Progressive MS category. Fortunately until recently I’ve stayed away from most of the MS meds apart from Copaxone for two years between 2014 and 2016. x
Susan Hayes Oh wow, just spotted your comment about the same hospital. That’s a first for me, so I’m guessing we could have the same Neuro etc.
Yep ! And one at QMC (Gilmore)who have a diagnosis of FND and didn't tell me 😣only found out 4years later when I went back with continuing problems .anyway three year later I've decided enough is enough and contacted PALS .and low and behold the Neuro phoned me and booked me in for brain and full spine mri which I had last Sunday so I'm waiting x
Hi Neil, I've been wondering how you have been getting along. Hope you are getting some treatment!!
Hi Avril, not very good really. Still can’t get steroid treatment until Prof has written and confirmed things with my team at Derby hospital. I’ve actually done a video, and for the first time it’s Premiered to show at 9pm UK time tonight so I will be able to live chat with people. I’m looking forward to it. Check out my channel and hit videos, you should see it. Thanks for checking in on me.
Hey Neil, as you know I lost complete sight in one eye and started to loose the second. Steroids helped me and now I feel I can see fine. After some extensive eye tests it turns out I have lost about 60% of my vision but guess what, I dont miss the bits I can't see because until these tests I was completely un aware of how bad my eyes had got and when you can't see it you don't really miss it.
I know the feeling of dread you are feeling when it comes to loosing sight, thinking about it is completely different to staring it in the face as a real possibility of the future but life will still go on.
Im sure the thought of loosing your mobility and sight turns that fear up 1000% but that is a future that may not be yours. And you don't know what your future holds so grab the now by the balls and have a f**king good time!
I hope you get some answers my friend and if that releases you from the grasp of MS then that is a battle won, you live to fight another day and you will show NSO (if that is what it is called) what a fighter really looks like.
Keep Smiling 😁
Thanks Ian, it sure is scary the thought of loosing your vision especially after 46 years of perfect clarity. The sight in right my eye blurs terribly, but then it can recover ALMOST completely for several hours. It’s blurred now, and making it more challenging to type this message on my phone.
I know where your coming from!! It probably is best to just try and forget about what could happen and get on with life right? I agree with you. What will be will be sort of thing. The mobility is so bad now though that just moving a few feet is agony. The muscles in my back are clearly compensating for all the muscles that are no longer working legs/hips.
I’ve not yet had a clear re-diagnosis Neuromyelitis optica spectrum disorder (boy what a mouthful) heck it may not even be that. Who knows?
Sounds like your doing quite well yourself Ian. I’ve been keeping up to date with your videos even though I don’t always comment.
You and Theresa are in my prayers for God to heal both of you of health problems God is the only doctor love you both
Thank you Karen.
@@NeilBradleyMS yvw hugs
Thanks for posting. And the autoimmune hits just keep coming eh? Sorry you are facing more uncertainty.
Thanks Vicki, and yes the hits just keep on coming thick and fast.
Hang in there.
Will do Tom, you too.
I have both
Hey Neil. Glad you got a potential answer to your difficulties. If it is confirmed, is there treatment for it? I hope so!
Hi Lynn, and thanks. They treat it with Immunosuppressant drugs as well as steroids. One particular drug used in the UK is Retuximab, but the side effects are horrendous which is significantly putting me off. My quality of life is bad enough with anything else.
For what it’s worth, I am on Ocrevus which I believe is similar to the Med you mentioned and am tolerating it very well so far. I agree, new meds are scary, especially heavy duty meds comparable to chemo with a load of possible side effects!
@@lw5682 Hi Lynn, I'm glad you're tolerating Ocrevus very well.. that's excellent. I believe Retuximab is used in treating Cancer, some of the side effects are Hair loss, visual problems, Hearing loss, Oedema (Face, arms legs) .. to many to mention.
Me too
Need blood work Neil.....especially for the AQP4-IgG also MRI again.
Hi Bodhi, long time no speak .. I hope you're doing ok. Yes, thank you for this .. I recently had a blood test when they did the Lumber Puncture in Feb this year. It was for a test I'd never heard of so they're checking this up. If not I'll be having the blood work. Not sure about MRI's though as recently had them (within the year). Look after yourself.
I hope this gives answers and help. I'm still waiting answers for my issues and maybe your path can help me find my way along. I've been lied to and misled so often that going to another neurologist is scaring me to death. You give me hope that there IS an answer other than "Go google a new disease to have" (yes a neurologist said that to me) Hang in there!
Thank you. It’s a very tough journey isn’t it, I really do hope my video are able to help you in some way. Makes you wonder how they get through medical school doesn’t it. 🤦♂️
@@NeilBradleyMS They don't seem able to handle patients who read. Seems to really crush their tiny egos. The first one I saw said "Oh you're just old" (I was 57). The last one said it wasn't my brain, it was my spine. Two months later he's raving about how wonderful it is that my brain is fine go google a new disease to have. Three days later he calls to say "You have lesions on your cervical spine you DO have MS." then 3 months later he sends my doctor a letter stating I'm 100% neurologically sound and he'd refuse to see me again... I'm sort of fed up
Neil did you have bouts of uncontrollable vomiting? I've had seizures and vomiting over the years and it all suddenly makes so much sense!
No, I’ve had nothing like that. Do you think you may have something like NMOSD then, are your symptoms fitting?
@@NeilBradleyMS I have a very classic set of MS symptoms but the only lesions that have shown are on my spine. I have been prone to bouts of vomiting that can last up to 18 hours and I get wicked hiccups that can last for an hour or more. Reading up on NMOSD it sounds like MAYBE this is my issue. My left eye went crazy about 12 yrs ago (same time as my balance and gait went bad) and now it is unable to track except on occasion and it hurts off and on. makes me wonder
Hi Neil, sorry to hear that one question you had some success with steroid injections. Would they help with what the prof diagnosed you with. Hope you and your good lady are ok, it is not ease getting that kind of news.
We are ok thanks Paul.. I’ve not yet received an official diagnosis but the treatment, as far as I can tell is iv steroids. This is kind of good news for me as I respond fairly well to them as a rule. Then they focus on immunosuppressant medication but I’m not keen on this because the side effects are horrible.
OP
Jane Weaver Hi Jane, not sure what you mean OP?
Well, I need a cup of tea with sugar after watching. Good news and good news in a way. You will get a diagnosis after blood tests I imagine. So....good news to know what drugs NOT to take and good news that 'Devic's disease' is treated with the steroids you know work.
Reading the literature it appears blindness only happens in some cases which is good.
You did get seen by the prof which is good.
In the balance I think that all went well and has some real hope for you to be treated better.
The opposite side of the coin is that you wake up still with the same problem:(
If there is one thing long term chronic illness has taught me it is to not allow myself to sink but rather dog paddle like bluddy hell for the nearest shore and be grateful. This is not because it is fair but because being seriously depressed on top of disability is totally not sustainable in the long run. Minimizing the suffering is sometimes all we can do.
I know you two must be reeling and the map co-ordinates have changed. But your love will sustain you❤
Thanks Willow, I always value your messages and take them on board. Hopefully they will treat me with steroids which as you know I respond to as a rule. I am however worried, having done some research now on NMO. Like MS, they like treating NMO with a immunosuppressant drug’s, a favourite one in the UK being Rituximab.
A brief Google revealed its shocking side effects to me:
1.Increased risk of getting an infection
2. Hair loss
3. high blood sugar levels
4. swelling (oedema) in your arms, legs and face
5. a reduced sense of touch or tingling or pricking in your hands and feet (like I really need more of this)
6. eye problems such as inflammation of the eyes (conjunctivitis)
7. hearing changes such as ringing or buzzing in the ear (tinnitus) and ear pain.
And those are just a few. It’s got me very worried indeed, and I’ve been thinking a lot about this. My quality of life is already quite poor now. But, to possibly have hearing loss, or further eye problems, or maybe oedema!!🤦♂️
Im actually seriously considering taking my chances and not having the immunosuppressant drugs. Im not sure I’d cope with the side effects. I’d be interested in your thoughts and perhaps what you would do if you were faced with this. xx
Did you have blood test to detect for nmo antibodies? I think it is called aquaparine?..
It will be good to do it.. It gives positive result in 80% people with NMO
And don't worry NMO has treatment as well and research is going.
And that's true..my neuro told me that if NMO is treated with MS meds is worse.
Hopefully you get a diagnosis soon..
You are a very good couple. Keep strong..
Grettings from Costa Rica.
Thank you Adriana.. yes I had the blood tests back in Feb when I had the Lumbar Puncture. One result has come back negative, but there is no sign of the other results. I was actually speaking to my MS nurse yesterday so she’s going to do some digging and find out.
Hi both oy you hope you're having a not to bad day. I watch all you video multiple times. It's the more detailed channel about living with that kind of disease and I like that. I would like to chat with you if you have an email of FB contact info please. Thanks have a nice day from CA
Hi there, and thank you for your kind words. I’m super happy you find our videos helpful. I like to try and show people what’s happening and keeping it real. You can contact me on Facebook messenger by searching for my unique id “neil.bradley.37”
Neil are you on Facebook?
Hi Ray, Yes I'm on Facebook.. in fact I think I've possibly had a friend request from you "Ray Ray", but I wasn't sure. If you can confirm this is you (on here) I will accept. All the best - Neil.
Well, at least not having MS is a good thing if nothing else. Oddly enough I just had my neuro appt & have moved into secondary progressive MS. Blah.
Hi Lisa, good to hear from you again. My re-diagnosis is all still up in the air and I'm waiting for it to be confirmed. I'm sorry to hear you've moved into SPMS, this happened to me also about three years ago, but then out of the blue they kept referring me in letters as RRMS again. I honestly don't think they know what to think.
@@NeilBradleyMS Can't say it isn't a roller coaster ride, eh? Hope you're getting some results. I just (finally) got a letter from my primary doc (neuro "doesn't do that") and a lawyer just picked up my case for disability so here's hoping!
Lisa OckGal Hansen Got my fingers crossed for you Lisa. 🤞
@@NeilBradleyMS Same for you!
Me too