In limbo land for 5 years

New diagnosis and before diagnosis
1

Hi everyone!

Im new to the forum and would like to share my story with all of you.

Five years ago i was taken into hospital with complete numbness to my body and nystagmus. I was given a Lumbar Puncture and an MRI. The MRi came back clear but the LP was showing signs of MS. My specialist told me that it could be MS or MG and that i should go away, just get on with things and not to worry. Ive carried on for the last 5 years as normal as possible with the odd symptom. Last november i got nystagmus again so my doc refered me to my specialist. He sent me for a blood test and an MRI which came back clear but the BT came back with antibodies of MG, so thats what he said i had.

On Thursday i started to get numbness and tingling so i rang my specialist and he said he would see me. He now believes it is MS and has organised a spine scan.

Please let me know what you think

Thanks, Emma x

2

Hi Emma

I’ve never heard of anybody getting nystagmus due to MG as far as my medical knowledge can recall but it certainly can mimic any eye nerve palsy and mechanical restriction of eye movement that may cause double vision, droopy lids. Other symptoms include fatigue (difficulty walking up and down stairs, chewing food etc), falling asleep, breathing problems… I’ve also never heard anyone having pins and needles due to MG either - though I would say if your blood test is positive then unless they’ve mixed something up it is quite an accurate and specific test (they usually look for antibodies against acetycholine receptor sites).

In MS you can have nystagmus, pins and needles, numbness etc but there also other conditions that may also cause these symptoms (vitamin B defficiency/ Lupus/ thyroid etc).

It sounds like there maybe more than one condition perhaps involved here and maybe more investigations might be needed MRI being the most obvious - it may also be relevant to rule out other conditions that I mentioned above by blood tests (though I’m not a doctor).

Best of luck

Reemz

X

3

Hi Emma, and welcome :slight_smile: A spinal scan is a very sensible thing to do as some MSers only have lesions visible on their spinal scan. Whatever your results, it will be an important piece of the puzzle. The thing that normally causes nystagmus is a problem in the cerebellum - the roundish wrinkly looking bit of the brain that lies behind the brain stem (sort of the top of the spinal cord). This area isn’t terribly easy to scan well and the standard NHS scans don’t do a brilliant job of it. Perhaps you should ask your neuro if it would be worth having a more detailed brain scan? I.e. thinner slices. I hope you get some answers very soon. Karen x