Hi I have posted a couple of times before. I apologse in advance for the length.
I saw consultant in August who said my symptoms were highly suggestive of MS. I went back the start of October and he thought I was having a mini relapse. I had spinal MRI recently which shows I have a syrinx which is in the thoracic area (T4-T9). I had brain MRI normal except ? increased signal to left optic nerve. I have had a VEP done though which was normal. My symptoms up until then had started with a dizzy spell in feb which then over a few months had terrible fatigue and fuzzy lightheaded feelings, stiffness and achey legs, tingling in toe, blurry vision mainly to the left eye periodicaly, shooting pains to left side of head and then prickling/sensitive sensation, internal vibrating sensations amongst other things.
By the end of October I started to feel better and November I felt much improved had worked up to 10 mins on exercise bike was able to walk more etc. I was just left with heat sensitivity but fuzzy/lightheadednes and fatigue were gone.
Just over a week ago I woke with funny sensations in both hands tingly/numb but not and pins and needly, this then after a day or 2 became just when tying at night and the tip of riht thumb more persistent and general unsteadyness and walking into doorways. I also fell getting out of chair, my legs ache more again and feel like they are going to give way if I go more than about 5 mins walking. I have also had a very starnge sensation of earthquakes a few times (very scary whilst trying to shop) and internal vibrating at night and in the morning and increased urination with feeling of not going properly. I saw my GP who prescribed prednisolone 40mg orally. I felt worse saturday but have noticed today for the first time in months my legs didnt ache when I woke and feel a bit better in myself. Is this dose enough to make a difference if were a relapse?
I have now had a copy of a letter to my GP from my neurologist which states that the VEP being normal is consistent with his clinical impression that it is NOT demyelinating disease. I am so confused. He has implied all along that he thought it was MS and that the syrinx is not responsible for and does not explain all my symptoms. I should be happy it is not demylination but it is all just so odd and obviously I just want to know what it is. I wonder if I should be worried about the periodic vision issues. Some mornings or if I exercise I cant see out of my left eye or it is just not right usually fairly brief. I think I just need a good scream.
Does anyone have thoughts? Thankyou for reading.