Is anyone here dealing with NMO (Neuromyelitis Optica aka Devic's)?
NMO: Is anyone here dealing with NMO... - My MSAA Community
NMO
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lauranell2u
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19 Replies
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I just found out yesterday that I tested negative to NMO. I wasn't surprised since I don't have optic neuritis. Good luck to you if you suffer from this ailment.
Thanks for the reply. I also test negative but my Dr says it could be positive at any time regardless. My lesions a long and are usually in my spinal cord and just have my 2nd run in they optical mylelitis. Like most things with either disease, it's a guessing game and a "wonder which part is next" game. Oh well. Good luck to you as well!!
Are you diagnosed with MS? Most of my lesions are also in my spine. Only 3 small lesions in my brain. My neurologist moved 5 states away and the new one is running all the tests over again that proved I had MS. I don't want another LP! This seems like a waste of time and money to me. I'm on Tysabri and doing much better than I was. No new symptoms or relapses since starting it in March!!
We are still treating like it is MS and not in them. Too hard to get a definitive answer unless you're IgG-NMO comes back positive someday. I certainly would not do that LP again. As of today I am stopping my Copaxone and starting on Gilenya. I think most things in this area of medicine is just a lets try this or that and see because there is no cure. So, that is what we do. Try one thing and then another and keep our fingers crossed while hoping for the best LOL
Your path sounds so much like mine. So many of my problems are visual, mainly eye pain from one thing or another: nystagmus, convergence insufficiency, optic neuralgia. Even thinking makes my eye hurt. No NMO diagnosis. Was on Copaxone for years. Just switched to Gilenya. I have more energy Gilenya, but none of the eye problems have resolved.
How long have you been on Gilenya? I'm so worried about heart problems and infections. I'm a nurse and sick people are EVERY WHERE!! LoL. Thanks for replying. It's kind of comforting knowing we're not alone.
Sorry for the delayed reply. I've been on Gilenya for about 6 weeks. Don't miss the Copaxone shots, but I'm also worried lymphocytes have been decreasing. Go for my 2nd month bloodwork next week. Anxious to see how much further they have declined.
Because I had lesions in my spine but none showing in my brain I was diagnosed as having Devic's for about 5/6 years. I took Azathioprine (wish I hadn't now!) When I came off it cos the neuro said it causes cancer and heart problems if on it too long I had a massive relapse and the brain showed a "flame like" lesion considered typical of MS. So, my diagnosis is now MS and I relapse when I get ill with a virus or an infection. I take a low dose antibiotic to ward off UTIs.
Dang Gilly that sucks. I'm a little afraid of the Gilenya due to the risk of heart problems and that little thing call ..death. The copaxone was the least immunosuppressive, so I had very little side effects, but the thing that I'm most concerned with immunosuppressant drugs is the little things like viral problems. I've had chicken pox...what if that zoster reactivates and I end up with meningitis along w a bad heart. Ugh!!! I'm considering the no therapy alternative at this point.
Are you on anything right now?
You reminded me Laura that I did get shingles 3 times in as many months when I first started on it. I had to have the treatment for that. It's only given to those with a compromised immune system so at least the shingles was dealt with quickly. We adjusted the dose of Azathioprine to stop shingles recurring. No, I'm not taking anything and haven't done since then (about 6 years now.) It was so obvious with hindsight that coming off an immunosuppressant would allow your immune system to go haywire, so not surprising that I suffered a big episode. Should perhaps have weaned myself off it rather than just stop. You'd think the experts would advise that wouldn't you!
So you have been completely off therapy that long? If so, how has that been for flare ups or relapses?
Nothing to report there since the big one following coming off the immuno. Did have a bad UTI that made me poorly and triggered a mini episode about a year ago, hence I now take low dose antibiotic to keep me clear. Neuro said that as you get older flare ups are less and less so I'm just going along trying to stay well. I don't seek out the company of anyone with the flu and my friends know to stay away if they have a bad cold! I like the feeling of being "drug free" in that I don't have to worry about side effects, keeping stuff in the fridge, taking it away etc etc.
Thank you for all the info. I am leaning towards no therapy. It's good to know there are those that choose that as well and are doing good. I don't get sick often, which is a miracle since I'm a nurse, but side effects of drugs vs side effects of MS seems to be a lose lose situation. Thank you again Gilly! I feel less anxious about the whole thing now hearing from you. Stay strong and keep in touch!
Love to.
Hi lauranell2u, it's Juleigh21 again. When I went off Copaxone after developing an allergy to it, I had a horrible relapse. Same thing happened when going off Tecfedira. Be careful. I missed weeks of work both times and had to do solumedrol. Good luck with your decision. Don't let those pesky lesions get you!
LoL@it'sJuleigh21 again. It is a difficult decision that's for sure. It's doesn't help that my decision making skills resemble that of a squirrel trying to cross the street. 🤓
🐿 stay well! Let me know what you decide and how you're doing.
still DMT med free. I take CBD oil every day and have remained relapse free for 2+ yrs now. I can't say it is or isn't the CBD oil, but that's my path right now.
Thanks Lois. No, I’m not on a special diet nor do I take supplements. I used to take Echinacea this time of year, but those with an autoimmune prob should be careful, so no more of that. Still have the ticking time bomb in the back of my brain, but just crossing my fingers and lots of praying/positive vibes. Happy holidays!
