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Help?

Hi everyone, I have posted on the forum in the past but not sure if I still have an account so have had to re-register! I am back as I have been dipping in and out of the forum occasionally as I am still not totally convinced on what is wrong with me! I have been having some problems for the last 6 weeks and am not sure what to do about it, my history is as follows, (I will try to be brief)

Been ill for about 11 years, with fatigue, dizziness, visual disturbance, double vision, tingling in face, tongue, mouth, slight numb patch on leg, creeping flesh sensations, sore skin that feels sunburned, aching limbs, muscle weakness and absolutely no energy at all.

I am 46, female, non-smoker, slightly overweight, do not work anymore, had to give up as so ill.

My diagnosis is fibromyalgia but my brain MRI last year showed numerous high signal areas in the white matter of brain. Report said “not entirely typical for demyelination, not entirely typical for small vessel disease”

Lumbar puncture and VEPs in September – NORMAL

I have had numerous blood tests, was vitamin D deficient but on supplements, on vitamin B12 injections, have been on those for 9 years.

I thought I was getting a follow-up appointment with the Neurologist but I received a letter stating not necessary and tests do not point to MS.

Fair enough, I thought I will just have to try and forget about it. Spoke to GP, who did not think it was small vessel disease, given my age.

Anyway I woke up 6 weeks ago and felt really ill, I tried to sit up and everything in the room was moving and jerking up and down, it was awful… I have had this once before in 2005 and think it is called oscillopsia. That settled but ever since I have been really dizzy, blurred vision, cannot seem to focus properly; feel really spaced out and cannot walk in a straight line. I have also been getting pain in left eye, it hurts to move it. The first 3 weeks were awful but seems to be settling somewhat now and I can kind of function again. I did not go to the Dr as I just think what is the point? They don’t have any answers. I have however booked an eye test for next week as my eyes are still not right.

Not sure why I am posting really, I just cannot shake the feeling in the back of my mind that I do in fact have MS even though my tests indicate otherwise. I started myself on aspirin even in case it was antiphospholipid syndrome and do feel bit better, but that could be coincidence! Can’t you tell, I am grasping at any straw for an answer??!

So , what would you do? I suppose I should go back to Dr but am reluctant to do so, I have been so many times about the same old problems with no answers, I have no quality of life but just feel that nobody cares enough to try and find out what is wrong

Thanks for reading

I guess what I am trying to ask is, it is possible to have MS and normal LP and VEPs?

I was so surprised that the VEPs were normal as I am still having visual disturbances, it has been 4 years now

have you seen an opthalmologist?

if not, ask your gp to refer you.

i’ve no idea if it’s possible to be dx with ms if LP and VEPs are normal.

when i got diagnosed i was having a big relapse and must have had one before because i only had one MRI and LP.

good luck

carole x

thanks for replying, yes, I saw an ophthalmologist when the eye problems first started but he couldnt find anything wrong with my eyes at all, and seemed to think the problem must be with the brain.

I only got a brain MRI last May, when I developed double vision when looking left. I still have that today as well as the other problems.

I don’t know if I will ever get to the bottom of it all.