Reply To: Should I know if it’s a relapse?

Home Forums Speakeasy Should I know if it’s a relapse? Reply To: Should I know if it’s a relapse?


itsmewithms
3 weeks ago

@vixen that was a suggestion I had to the Shift MS group about expanding their presence in the US…we are so much bigger than England that it is about impossible to know where someone is with just the name of your city. The city name is often used for many cities across the country but usually only once per state. They should add a level if the person is from the US and add state or use state instead of city. Likely the same for other large countries.

Regarding the post 😉 sounds like we are in a common place but have lesions in very different places. I was Dx in 2005 when my daughter was 3. I had been having symptoms for probably 5 years that were always explained away before my foot was sticking out strange one day (no pain or explanation) and that lead to an MRI showing lots of lesions.

Until the last about 5 years I only had a few attacks that would bother my gait and balance and once my speech until the prednisone (steroids) resolved them. Then I was 80% better within a couple of days with no obvious residual effects. Once I hit about 50 I started having more gait issues and imbalance and needed to have a hip replacement. I’ve never really bounced back from that but at least the joint itself doesn’t hurt anymore…all the muscles and ligaments around it do ;-0 not sure if that is a fair exchange.

I haven’t had any real attacks for many years and no new lesions but have increasing impact on how much I can physically do in a day. My right leg is heavy and foot drop plagues me. My neuro told me in one of my last annual visits that he would class me as SPMS now and I just nodded in acceptance. I don’t think the letters assigned to me make much of a difference. MS is a progressive disease from the start, always has been. I think the definition just helps me set my expectations. I don’t fear the sudden attacks any more that may or may not resolve themselves. It is more like walking on a ramp instead of down stairs. But- you have to acknowledge that all of those stairs weren’t level in the first place, they all sloped as well and the spaces between the stairs were actually a ramp. So – in my mind being classed SPMS is a good thing rather than a bad.

I kind of felt like crap last summer but without any major troubling symptoms. Just felt off. I had my annual MRIs about that time and nothing could be seen so I got no Sol Medrol. Then I felt progressively worse and the vision in my left eye was a bit blurry so a new set of MRIs. This time they could see some activity on the MRI in my retinal wall so I got blasted with Sol Medrol (at home infusion for 3 days) and had no rapid improvement although the blurriness gradually subsided. It wasn’t like the normal balance/gait attack.

I like Dr Boster’s videos and this one covering SPMS I thought was very informative https://www.youtube.com/watch?v=KcRWaOjOL2I&t=839s

I’m not upset about it, can’t say I was surprised by it and don’t think it really matters that much. I just have to set my expectations and try to manage. I take my DMT (Ocrevus), keep up my vitamin D3 (holding at 70 right now), get my exercise (what I can), get my sleep and try not to stress out. I am eating as clean as I can tolerate 😉 life has to be worth living and do all I can in a day- Good luck