Hi everyone, I was diagnosed with RRMS in December 2012, first ever symptoms started with burning then numbness in August 2012, it all got worse and I was then dx as it was a severe relapse. I’ve not had a relapse like that since but I’m unable to work due to fatigue, memory problems retain and recall of information which I find frustrating and makes me feel like a dumbo! The burning has never left me infact it’s got worse and has spread to different places periodically. All I can go off is my only relapse where I was numb head to toe for 3 months. I just wanted to ask if anyone knows if your can go from RRMS to SPMS quickly cos to me I didn’t recover properly and existing symptoms have gotten worse, I’m off balance, I walk into walls (always my left side as that was where I was numb for 3 months. Sorry for the long post but it’s all very confusing. I’m not on medication as my neuro just wanted to wait and see how things went.
hiya that sounds horrible. i have symptoms like that but they always come and go with the relapses and i’m pretty much 95% ok for months at a time. relapses now becoming more frequent so thinking of starting DMDs. do you have an ms nurse? might be worth having a chat with him/her, or get another neuro appointment to talk it through. sorry thats not much help x
I’ve posted a few times on here about the very vague definition of what a relapse is. Basically, if your symptoms lessen a bit or you have some symptoms that go away altogether, any worsening of symptoms can count as a relapse, if you want it to. The reason you might want it to is because the really good MS drugs (eg tysabri) are only available if you have RRMS, although I think tysabri, at least, is being tested as a treatment for SPMS. But if you’re going on it, you want it sooner rather than later (ie before the test results and the NICE decision about giving it for SPMS are known).
As for the mental problems and fatigue, you might try Modafinil. You will need to say to your neuro that you want it because you sleep more than a normal person, because they will only prescribe it for this. But it is a neuro-enhancer, so it can help with all kinds of brain things. It doesn’t do it for everyone, I’m afraid, but definitely worth a go.
Unfortunately MS diagnosis isnt a precise art and the practitioners can be very guarded in making a firm diagnosis without quite a long period of elapsed time as evidence. From what I have read it is possible to move quickly to SPMS, but it is also possible for that to take many years. I have a degree of frustration in my own diagnosis and my MS nurse, who is really helpful, described it to me that I had either moved to SPMS or still had relapsing and remitting, but without any remitting. When I mulled this over I came to the conclusion that it didnt really matter how it was described given that the end result in terms of symptoms was exactly the same.
Try not to get too frustrated in the diagnosis delay, the only person that really knows is you and what your body is telling you. One of the things that I do is keep a runnning record of the issues/levels of disabilities that affect my daily life, incl;uding mobility and I make sure that all the medical professionals involved in my care have copies. the other thing I did recently was to do a self assessment aginst the PIP criteria which coverred daily living and mobility issues, I have also done self assessments against the Kurzen EDSS scale, which again helped in assessing where I potentially am with my MS.
Good Luck
JC