How to interpret symptoms?


I just want to ask a question about how to interpret symptoms I’ve been experiencing. You see, I was diagnosed last November with RRMS and two weeks ago I had a routine appointment to see my MS Nurse. She noticed that my leg seemed to be worse than when she saw me before. I’ve bee feeling lots of ‘hot pins’ in my calves and numbness in my feet. I also find that my hand and arm are often very heavy and I get severe ‘darts’ of pain in my fingers, forearm, shoulder and neck. But, these feelings are not new. They just come in waves! (so many hours good, so many hours bad and so on from day to day, I never know how long anything will last) Anyway, my nurse is very attentive bless her and she arranged for me to see my Neurologist who in turn asked me if there were things I noticed that I can’t do now that I could do last November. I gave some examples to her e.g. can’t lift my arm straight up over my head (noticed this when I was putting shopping into a high cupboard, otherwise probably wouldn’t even have known about it!) or when I go to get up from a chair I often topple over before I steady myself to stand up and get going etc. Her answer to me was that I was not having a relapse but that my symptoms were just fluctuating in severity and I was on a very low treshold to go onto new meds (I’m on copaxone at the moment) I was a bit afraid to ask if that meant that I was on the threshold of SPMS or just need some other med for RRMS. These symptoms of mine are just ongoing with no perceptible change from day to day really; but if I look back over a month… well, then I do notice how I’ve gone down.

Thanks for reading this far and I’m sorry for going on about this, but I guess I just needed to get it out there. Has anyone exprienced anythin similar? If so, any ideas?

Hi Ro, I certainly don’t interpret your neuro’s comments as meaning you are on the threshold of SPMS, and I’m not sure she’s saying you need new meds either. To me, being “on a low threshold for new meds” is a bit unclear, but could mean you are NOT a prime candidate for them. This would fit with her belief your variable symptoms are not new relapses. A switch of meds would usually only be considered if you were still relapsing on the one you’re on (Copaxone). If she doesn’t think you are, there would be no obvious reason to take you off the Copaxone. So I guess if she’d said you were on a high threshold for new meds, that would mean there were a lot of indications in favour. If she’s saying you’re on a very low threshold, to me that sounds like not many indications in favour of switching. If she thought a switch was urgently needed, I can’t see why that wouldn’t already be going ahead. If she’s willing to leave it, it seems to me she can’t think there’s a real problem with what you’re already on. Tip for the future: If you don’t understand, never be afraid to ask! Were you afraid of hearing something you wouldn’t like, or more afraid of looking silly? If it’s the latter, don’t worry about that. It’s part of their job to explain in a way you can understand, so if you didn’t, just say - you shouldn’t come away feeling you wanted to query something, but couldn’t. Tina x

Thanks Tina,

I guess since I only found out that I had MS in November, the whole thing is very new and scary. When I look again at what I wrote last night, it looks like a ‘panic attack on paper’! Sorry about that. Thanks for responding. Ro x