Hello all,
As I know you understand by now writing this i am desperate and need some adevice.
In octobee a relapse started and i was admitted in a hospital for corticosteroids as usual. 30 days after that the same problems returned. Foot drop with 1 leg, stiff and heavy arm of same side, tired, dizzy and generally miserable. However couple of days ago i started also noticing changes of sensitivity of the same arm and worse…i feel sharp pain behind the eye when moving it to the sides. I have had 5 or 6 optical nauritis until now and i think this is what’s coming next.
Problem is that less than 40 days ago or so I already got the treatment and I know it can not be repeated in such short intervals. I feel in a dead end with no way out.
Do you have any other suggestions of how to stop neuritis? For now i am only taking vitamins and my usual medications and I am thinking of avoiding dairy and meats. Seems desperate to hope for a faster result but I am worried.
Thank you for your attention.
Hello,
Have you told your MS Nurse about your recent symptoms and asked for advice?
I might be wrong but I think that steroids are used to speed up recovery from relapses ( including Optic Neuritis) and don’t make any difference to the outcome. When I had Optic N I didn’t take steroids and my vision recovered. It took some weeks but it recovered.
In longer terms. There is a lot of advice out there on diet, exercise, relaxation etc. I make use of the guidance in ‘Overcoming MS’ - book and website by an Australian Professor of Medicine
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Are you in a disease-modifying treatment? The easiest relapse to fix is the one that you manage to evade. I know ow that doesn’t help you right now, but it’s about the best way of protecting you from getting in this horrid fix again. I am sorry you’re struggling.
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Alison I have started treatment in january so not long enough to see effects I guess. Completly agree that we should try to prevent all relapses but some triggers we can’t control or I don’t fully understand them. I will see what happens now and hope for the best
Thank your for your reply
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Thank you for the reply. The nurses and doctors here need to examen some vision loss and i don’t have that as of now. I hope to prevent it before that stage. These is the constant sharp pain behind the eye for 3 days now.
Previously from another neuritis i permanently was left with damaged sight but not a lot. Sadly it didn’t recover so that is what worries me now and also the lack of other options to stop it. I will try to find the book you mentioned and see what else i find.
Thank you again
Thank you and that is good to hear. These things need to be kept under constant review. I soldiered on with my first DMD long after it had stopped working before switching up to something stronger. I know it’s early days for you with your treatment, but breakthrough relapses are not what you’re aiming for. You should have a more ambitious treatment target than that, I think, or at least a very clear explanation from your advisors on what they think success/failure looks like and what the plan is if your current DMD is not getting the job done.