Ok so, Im 28 and am still at the ‘possible ms’ / ‘isolated syndrome’ phase of diagnosis after lots of odd symptoms and MRI showing numerous areas of demyelination.
The problem being Im 34 weeks pregnant so certaain diagnostic tests like lumbar puncture have to wait!
My main concern is how long will they let an attack go on for. I initially began with a numb right shoulder around 4 months ago, which disappeared and quickly (just over 2 months ago) became numb tingly feet, this odd fuzzy cold and tingly sensation has spread up my legs all the way to just above my belly button, and my balance is terrible too meaning I walk stiff and stumble a lot.
Ive been lucky that due to being pregnant, Ive had consultants on hand to push me through the system to see whats wrong and within 3 weeks I had initial referal, MRI, results and already have my first appoiontment with a neurologist in 3 days time!! Consultant said if it wasnt for the pregnancy i wouldnt be anywhere close to even the first step by now.
How long can 1 attack go on for before they really need to do something…?? Obviously MS wont be diagnosed without remission and relapse… but Im starting to wonder if I’ll ever even reach remission phase!
Hello MrsP, and welcome to the site
An MS attack can last anything from 24 hours to many months (even a year), so there is still a good chance that your symptoms will start to improve if it is relapsing remitting MS (RRMS) that you have. (About 85% of people have RRMS when first diagnosed.)
There isn’t actually anything that can be done to stop a relapse apart from corticosteroids (usually just referred to as steroids). These can speed up the time to remission, but they don’t always work and they tend to work best when taken early on in the relapse so 4 months in may well be too late for much of an effect. Steroids also don’t change the outcome - what was going to be the end result still will be, only possibly sooner. They are also very strong drugs, so I’m not sure I would want to be having them if I was pregnant, although I think they might be allowed.
Sorry to say it, but I would think that it is a matter of waiting to see how things go. Hopefully things will start to improve really soon.
I hope the rest of the pregnancy goes very smoothly and that the new baby is nothing but a joy
this is a great place for support and help and sometimes we just like to have a good old moan, it helps.
hope things get easier for you very soon
love mandy xxx
Rizzo, thankyou too Yes, the consultant did say that if it did need to be treated the steroids would be ok for baby, however as long as things stay about the same Im happy to wait until he’s out. On the other hand the good part is that Im nearing the end of my pregnancy so if things do change to much there is the possible option of giving birth early to start intervention.
Wait and see approach is pretty much what i also said i would prefer, its just very scary being pregnant and always feeling like your gunna have a terrible fall at any given moment! But not long left now so… just a case of being extra careful! All things said Im taking it all pretty well, and staying positive as to be honest of all the things to be diagnosed with it could be wayyyyyyy worse!!
I get my first visit with the neurologist Thursday so im eager to hear his opinion! Only bad thing is I have to see the anaethetist too as he might tell me that I dont have the option of an epidural if labour gets too painful lol never good!
Mrs P xx
Maybe he can do a quick LP while he’s at the epidural?
Lol i thought that… can guarantee I wasn’t going to care less about them doin it at that point either loll!
Hello and congratulations on you pregnancy! how exciting, not long to go
I’m going to say the same as others, which is you really just have to wait. I had a relapse which was put down to sciatica last year which lasted about six weeks, then nothing until last june when I had bad numbness and weird sensations, which faded but I still have in my feet. I kept asking people, when will it go away? does this still count as the same relapse? and eventually… will it maybe never go away?? No one knows, and getting your head round that is hard.
Sounds like you are having excellent care, there is loads you can do for pain that is not epidural, though I know its so hard not to worry. I didn’t have time for an epidural the second time and I freaked right out lol but in the end it was fine, adrenalin is a wonderful thing!
Good luck!! xx