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First Neurologist appointment done - Dont know what to think

Hi all! I’ve just come on here so I can have a read of these forums and hopefully find a little clarity. Since the start of July I started with pins and needles and numbness down one leg which has gradually spread to encompass my whole body and now also includes burning, coldness or “ants under the skin” sensations. I have also noted that this is worse at bedtime or after any exercise or beloved horse riding. I have totally lost sex drive and for a while now have felt totally drained and been clumsy with one episode of blurred vision in one eye. I had been seen by GP who has done every bit of bloodwork under the sun: LFT normal, UAndE normal, thyroid normal, glucose normal, Hb normal, b12 and all associated normal, calcium levels normal so he referred me to neuro. Saw her today lovely and efficient. Tests howled reduced sensation and also asymmetrical reflexes. Didnt do anything looking at balance etc. she has prescribed amitryptilin for the parasthesia and had referred me for an MRI and a eye test (unsure what this will involve and can’t find any info on it) with possibility of lumbar puncture (crapping self at the prospect). I am aware there could be differential diagnosis but other than saying it could be my body’s after response to a virus she was a bit vague. Not sure how I feel about that suggestion as I haven’t been unwell. She said worst case scenario ms but that in all her years as a neuro she has only seen one person with my range of current symptoms who had ms. So I’m just wondering about others experiences and also if it isn’t ms what could it be? I don’t think I can put up with this constant sensory feelings as its impacting so much. I used to be able to do a couple of hours at the gym ad now struggle for more than 10 minutes as the sensations are so intense so any tips would be great. Thanks for reading this :slight_smile:

Not all neuro’s are willing to put all the cards on the table to patients and therefore are seen as cagey. My neuro was very cagey and didn’t want to even tell me what he thought was going on (GP suspects it’s nothing neurological, but in fact ME/CFS).

A lot of neuro’s won’t put anything into context until they get tests and better diagnostic steering as neuro field is quite a complicated field.

I know the uneasiness you feel and that you want to have some idea, but maybe the neuro not saying anything can be the best for the situation. I know that my neuro said that he didn’t want to say anything to get my hopes up or to make me think I have something when I haven’t.

I honestly don’t know what it could be that could be causing your symptoms, but it sounds like you got a very good neuro who’s clued up. Just hang on in there and know that you’re heading in the right direction at least.

Best of wishes and luck,

Tsuki xx

Hi. I really resonated with your post, as have broadly similar symptoms - dizziness, ‘ants crawling over many parts of my body’- more pronounced on the right side but there to some degree on the left too and such fatigue that kicks in so suddenly it feels like I’ve hit a wall! Exercise wipes me out and I generally really active. Again, not aware of being unwell so can’t point back to a virus or similar. I have a relatively stressful job but I love it and don’t feel stressed so don’t think that’s the problem. I have also had all the blood tests under the sun and all clear and I had an eye test last week and although a slight change to prescription, nothing major to report there. As I have PMI I am seeing the neuro for the first time tomorrow afternoon so I am guessing I’ll be in limbo a bit longer also. I hope it all works out for you. S

Thankyou for your replies. This is some sort of special eye test she is referring me to as I said I’d had my eyes tested recently. Should have all those done within next 6 weeks she thinks then await them analysing results. Think I’m less bothered about a label rather i want these symptoms managing a bit or teaching me how to do it so regardless of the cause they are not stopping me doing the things I love. What is pmi susie?