Hi i was diagnosed oct 31st 2008
So halloween really is a sad time for me
I am currently struggling to walk
Hard for me when i was an international dancer at one point no longer.
I have to think teice before before stand,walk and rrms slowing me diwn.
My only option available to me is infusion Ocrevus which im not to happy about as most drugs have failed.
Can anyone give me advice please
I have aggressive RRMS, on every medication I took I would have a flare-up fairly regularly. Each MRI showed more lesions, but I was highly reluctant to start Ocrevus infusions because of the possible infections and susceptibility to illness. I haven't been on Ocrevus more than 6 months and got my first full dose just recently, but there has already been a cease of exacerbations. So, as long as I stay vaccinated and try to keep my safety in mind I think of this drug as a win for now.
I got my definite diagnosis of RRMS in 2015. I was on copaxone for a long time before my neuros found it wasn't working well for me. I was tried on tysabri in 2020, but I only had the 1 infusion because the blood test they did at the infusion showed I was very JCV positive. So, back on copaxone until my neuro had enough evidence to get me on ocrevus - I had a definite change in my seizures, that got me hospitalised for 27 days, and that alone gave my neuro enough evidence to petition the board to get me on it. It was absolutely amazing! I no longer needed my manual wheelchair constantly! Even the patient transport lady, who took me for both my 1st and 2nd, noticed a definite change! Don't give up ❤️ the steroids they give you as one of the premeds, the other one an antihistamine, works fantastic! I should warn you, you will start to feel a bit rubbish coming up to the 2nd infusion, and every infusion thereafter, but you will at least have a few months of being back to "normal." Keep strong, you are a warrior, so be the warrior you are and fight for some semblance of "normality." ❤️🫂❤️
Hang in THIER going through the same EXPERIENCE 8YRS.
Exactly not feeling the same way
PPMS has slowed me down, but in the 2-3 years I've been on Ocrevus, it has halted or slowed my progression. My advice is to see a gait specialist or other doctor about getting a brace for your weaker leg. See if you can find a physical therapist knowledgeable (or certified) in ZHealth (a neurological based PT system that won't overtax the body) or see what you can find for free from the MS Gym (it's on Facebook and I'm sure elsewhere too).
Most of the time I walk with a poor gait, for longer walks I use a cane, and there are times when I have to pause and think twice about how I'm walking or how I'm going to approach steps with no railing.