Sorry if this is long. I have been under investigation for MS since august last year. I had a brain scan last august which showed ? increased signal to left optic nerve. It was found that I have a spinal syrinx at T4-T9 but my neurologist has sai this is incidental and will not be causing my symptoms. I also had a VEP which is normal. I have also had all the usual blood tests for mimics. I had an episode of bilateral vision loss 10 years ago which may or may not be related. I had a dizzy spell, fatigue and sore weaker legs last feb. An episode of lightheadedness, dizzy and fatigue in october and then december numbness and pins and needles in my hands my tongue and lips were tingley and fizzy drinks tasted flat and hot didnt seem hot and my legs would feel like they were going to give way and also terrible balance, intermittent double vision. The GP thought I had a nystagmus and said my Romberg was hopeless. I have also had some other sensory symptoms like buzzing and banding around my rib cage. The heat makes me feel terrible and makes my toe tingle. Anyway I saw the neurologist when I was like that in december and he has written to my GP saying he thought he may not find an organic cause but would keep an open mind asI am genuine about my symptoms. He also wrote that I reported being off balance, that I appeared to have a tremor (i did) but that i was anxious, had palpitations (i didnt). I have improved alot since december/january and can now walk without a stick again and a reasonable distance, my head is generally clear. I am left feeling a little weaker than I should and bladder difficulties and some cognitive issues and the sensory symptoms still come and go but much better overall.
I have had another mri but with enhancement last week and I am due to see him again on monday. I am scared he is going to jut dismiss me. I have had to have a change of job as I am no longer fit to work in the role I was in. He suggested that I see an optician for thevisual disturbances who said my left eye is weaker now than it was at the last examination (9months prior) other than that he told me to google my symptoms!! I have seen a physio who is reluctant to do anything much but did give me some exercises for balance and to strengthen my legs. The physio did my reflexs several times over so I am inclined to think they may have been brisk as the GP had commented that they were brisk but he would put that down to me being a busy mum.
I am wondering if anyone has suggestions who to get him to refer me to next or what else I should look at. I feel the consultant is quite dismissive, he wont answer my questions. He is a MS specialist. Everyone has told me it is highly suggestive of MS including GP, an ex MS nurse and even the consultant when I first saw him. I dont want MS but had got my head round it. I took a list of symptoms the last 2 times but not sureif that is wise or not. Sorry if this is all in a jumble. Just dont want to be dismissed, I have 3 children 5 and under and it was so hard to manage this latest episode, no diagnosis seems to mean no support.