I’m new to the Forum and the crazy world of MS! I was diagnosed in April after a long run in and like everyone, am gradually getting my head round it. I don’t know which kind I’ve got yet - which I must admit is on my mind quite a bit. When I was diagnosed I was mainly completely exhausted to the point were I couldn’t string a thought together sometimes and my balance was off. Now the balance problems have gone and my energy is better , although I get much more tired than I used to and it comes and goes - its more ‘normal’ though. Instead are increasing problems with my legs - weakness and a strange feeling thats hard to describe - have a lot of trouble with hills and stairs (never used to by the way!) Pins and needles in hands and feet, jerky legs in the evening. Theres all come and don’t completely go, the last few days have been rough but suddenly yesterday and today (so far), feel perkier and my legs don’t feel normal but much better which is lovely. Anyway so much rambling from me… just wondered if other people have similar experiences especially in the coming and going nature of symptoms? I can’t see a relapsing/remitting pattern , but wonder what other people think?
I can see that people here know loads and grateful for any thoughts…
My main advice would be to start keeping a diary. If it’s primarily a health diary, you might be able (even if only in retrospect) or see some clearer patterns to your symptoms.
If you are using a tablet or smart phone, you can get a diary app, which is a brilliant way to keep records. I’ve been keeping mine now for about 6 years and it’s really helpful. Partly because I can label different types of symptom / issue and then bring up all occurrences of similar problems very easily.
The majority of people do start off with relapsing remitting MS, so it’s likely that this is what you have. It’s a bit surprising that you haven’t been told what your neurologist thinks you have given that your diagnosis was more than 6 months ago.
It does sound like you have RRMS from what you’ve said, one thing you might be expecting is that remission will always be complete. And it’s not necessarily so. For example, I’ve not properly felt my feet since my first relapse more than 20 years ago.
Getting started on a disease modifying drug (DMD) sounds like it would be a good thing for you to aim for. Then at least relapses should be reduced in both number and severity. Do you have an MS nurse? Perhaps you could talk to him/her about your symptoms? If you don’t have an MS nurse, perhaps you should. You could phone your neurologists secretary and ask how you make contact with a nurse?
Last time I saw the neuro he said he wasn’t sure yet. You’re right though, I’m struggling to understand what might be a sign of relapse and what is the ups and downs of MS. I do have an MS nurse and have spoken to her about it a couple of times - she isn’t sure either! I’ll check out the diary app - sounds like a good idea.
I see the neuro againin January and I’m sure this will be the main topic of discussion along with the DMD issue.
Thanks again for your thoughts - its so good when someone knows what you mean!!
Whie I was first diagnosed over 4 years ago the initial attack where I had a constant weak left leg with a limp lasted about 2 months gradually easing off to being “normal”, over the next 18 months I was fine, in fact I even doubted that I had MS. Unfortunately, MS being MS is very good at tricking you into thinking all is back to normal. About 12 months ago the symptoms slowly came back, giving good days and bad days. Now though I can hardly move my legs most days, I’m lucky if I can walk 20 yards, the stiffness and weakness is a nightmare. I never in a million years thought 4 years ago I would be so effected by this awful condition !
I’m really sorry to hear that things have got worse for you, I hope that you can still find things you enjoy. Your description is useful - although I can’t remember an attack, the experience of a symptom arriving and then gradually settling in and getting slowly worse is familiar. Its quite a thing to try and get your head round - since my first post a few days ago on a good day the last two days have been really tricky with my legs being hard work to move!