Am I going crazy? !!

New diagnosis and before diagnosis
1

I feel like I am going crazy, imagining symptoms whilst friends, family and medical professionals patronise me - please help guys!!

I am a 30 year old woman. Two years ago I had acute ON which resolved. My MRI showed a lesion but it was not typical of MS and not very ‘clear’ (!!?) and I was discharged. For the past 2 months I have had a neck twitch and kept dropping things - my thumb was painful and stiff. This was followed by extreme light headed dizziness - I was signed off work for a month. I had a numb-but not numb feeling in my left arm, hand and foot, a prickly hand and a crawling feeling occasionally in my back. These symptoms resolved in a few weeks, but i feel tired and weaker in my arms, and my left hand is still dropping things and gets achy quickly.

Due to a liver function test showing a possible virus and low folic acid levels, the neuro i was referred to said it was unlikely ms. She did various balance and strength tests. Her positivity annoyed me - i know my own body and i’m not feeling normal/right! Can someone tell me if i’m being a crazy b****?!

Is it worth doing another mri? I’m v worried that if i get a positive diagnosis it will affect getting a mortgage, my driving licence/insurance and future employment (I am a uni lecturer). Is it better just to battle on and live for the moment?

Thanks in advance xx

2

Hi,

Only you know how you feel so you need to push to have another MRI if only to put your mind at rest. The things you describe could be attributed to a number of things but there’s always the possibility that you have another lesion, so push and push for another MRI.

do let us know how you get on please. Good luck.

Janet

x

3

Little Miss Sunshine the neurologist is one you have seen recently, since your latest crop of strange things appeared, I take it? And she decided ‘no need for further investigations’? Assuming yes, then it seems to me that you have two main options: either you press for further investigations now, or you hold your fire and wait to see what, if anything, happens next.

The disadvantage of option 1 is that, if you go in guns blazing and demand another MRI and it doesn’t show anything much, that leaves you feeling sorry you spoke, and puts you in a weaker position when next you feel the need to put your foot down with the medics.

Your latest symptoms have now been thoroughly noted and documented. So the advantage of option 2 is that, if and when something new happens (which I hope it doesn’t, obviously!), you might well find that you get a rather different reception from your cheery neurologist. And you won’t have had to put you head above any parapets. So, if you are a person who likes the quiet life, option 2 is a perfectly OK one. Time is the best diagnostician, no question, and this applies with bells on to something awkward to dx like MS (or whatever else it is that might be up with you).

Having said all of which, when I rocked up to the neurologist with what turned out to have been my second relapse, I was posted into the MRI scanner before my feet had touched the floor (I hadn’t been scanned for the first one) and got my dx a short time later. If I had been told that time to go away and try to forget all about it, I think I would dug my heels in and insisted on an MRI - I would have gone for option 1! The risk of delay is (then and now) that you don’t get on a disease modifying drug as fast as you might have done.

As far as future life insurance etc are concerned, I’m afraid you are basically stuffed already on account of your history - certainly for anything remotely neurological. As for job prospects: well, an MS dx certainly brings with it certain statutory protections to weigh against the employer-alarming label, but I wouldn’t set too much store by them, to be honest. I do not think that these things should be major factors in your decision about what to do or not do right now. An MS dx does not in itself bar you from driving, by the way, although you are legally required to tell the DVLA.

I think you should ignore all those peripheral issues for now. Narrow down the question to how keen you are to know (or get closer to knowing) what ails you, even if it means forcing the pace a little. You won’t be wrong, whatever you decide.

Good luck with it all.

Alison

4

Maybe ask to be referred to another neuro? If you were unhappy with how you were dealt with, that might be an option. You obviously want to get to the bottom of it, but bear in mind that if you possibly do have MS, it could be a long time before you get an answer, MS is notoriously difficult to diagnose, your symptoms could point to many other things. Sometimes it just has to be a waiting game…waiting to see if you develop further symptoms. I’ve seen a few different neuro’s & would much rather have positivity than negativity…

Alison has covered the DVLA & I don’t think MS, as such, should prevent you from getting a mortgage.

Good luck

Rosina x

5

Thanks all - guess I just need to sleep on it for a while :slight_smile: xx

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