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Where do I go from here

Hi everyone

I'm not sure what I am hoping for by posting on here again, maybe just the chance to offload a bit. anyway a quick recap. Started with  a tingling senstaion in my right toes, then a kind of numb feeling in my right leg along with weakness of right arm and leg. I also had reduced bladder sensation (unusaul for me as have overactive bladder) Saw neuro who said mild ataxia, weakness and brisk reflexes on right. Had MRI of brain and neck which were clear, had a letter from neuro who said no further tests needed as demyelination had been ruled out. I continue with some weakness, although improved to how it was and also have lower leg stiffness which gets worse as day progresses.

Gp wanted second opinion and after lots of deliberation went to see new neuro. Very nice man who did some tests and has now written to GP and said that i had coordination problems affecting right side, mild weakness of right side, i was unable to walk heel to toe without assistance and he found relexes to be normal with the exception of plantar reflexes which were mute on both feet. These had previously been normal. He had reviewed my previous MRI and if they had shown even the slightest abnormality he would have requested lumbar puncture and other related tests but as the MRI is normal he agrees with the first neuro that demyelination can be ruled out. He will see me again in six months to make sure that I continue to improve. 

The thing is, I don't care if I don't find out what is wrong, but i would like some relief from the stiffness, the neuro said that without a diagnosis he is unable to prescribe anything, and that hopefully things shoul contnue to improve. I am fed up with making excuses as to why I can't do something, ie running in races with the kids. I can sort of run but I quickly look like I have had a few drinks with a leg that doesn't go where I need it to.

Ahh rant over, thanks for reading, feel better just for posting this.

xx

hi there

i was on meds for neuro pain and stiffness for over a year before my dx of ms recently and from what i believe you don't need a firm dx to get help regarding pain as i could be many a thing causing your probs and not just ms.you should see your gp for something to help

take care and good luck

 

Well, how peculiar! There are more conditions than just MS - why wouldn't the neuros have you tested for them? Your clinical exam is clearly abnormal so something is wrong.

I also agree with the other anon (two anons is a bit confusing!) - they can prescribe without diagnosis, however some meds are bad for some conditions so they won't prescribe something if they suspect you could have that condition.

If I were you, I would be asking some questions about alternatives to MS. If they've ruled out demyelination, what haven't they ruled out??

Karen x

Thankyou for replying, My Gp was sure my symtoms were MS related, I have an open mind. , even though GP still thinks MS.  He says that he thinks 1 of 2 things have happened. 1. that the first neuro was rubbish and didn't even do a full neuro exam (entering to leaving the room less than 10 minutes) and the 2nd neuro is just out of date. 2.  that the 2nd neuro is just buying time to see what happens in the next few months to see how the symptoms progress.

The other thing the neuro had written was that clinically he thought it was likely to be MS, but that changes on brain MRI were necessary for it to be MS so therefore  he would agree with first neuro that demyelination could be ruled out. He has said in the letter that if the symptoms do not improve sufficiently then he will repeat the MRI. He did not like prescribing meds without diagnosis as they can mask any symptoms?? The only other tests I have had are some  blood tests for vit defiencies and other routine blood tests, such as full blood count, cardiac, thyroid, coagulation. ( I have antithrombin deficiency, so at higher risk of blood clots, and have had clots in the past) 

How can my reflexes change over 6 months. Exams in Sept and Nov showed brisk right sided reflexes but normal plantar reflex in both feet. Exams in Jan and March showed normal reflexes but mute plantar reflexes in both feet. Does anyone know the significance of mute plantar reflexes, I have googled it and can't find much on this.

Thanks again x