Hi everybody. I’ve been lurking on the forum for a bit just reading the different threads and thought I would say hi. I haven’t been diagnosed with anything yet and have been informed that I won’t be getting to see the neurologist until November.
I originally went to a physiotherapy walk-in clinic as I have intense pain in the back of my neck. I mentioned how it had made my left side much weaker- dropping things, falling over and losing my balance, drop foot which I’ve had for a few years getting much worse. They did some neuro tests which showed problems with my co-ordination such as the finger-to-nose test and heel running up the shin, and told me to go to the GP. GP reffered me to neurology 7 weeks ago and I won’t be seen until November. My neck is still a literal pain-in-the-neck and the physios are refusing to see me about my neck at all until I have seen the neurologist and they give physiotherapy the go ahead.
Symptoms are just very very slowly getting worse. Having some problems with my walking as I’m having difficulty keeping balance, I wobble about a bit when standing still with no support, and I’m slow and clunky on the stairs. I’m finding my word-finding abilities struggling, I find writing more difficult, and my typing has way more errors in it then it used to. I’m also finding some difficulties with my swallowing but, I’m okay as long as I concentrate.
I did have an MRI of the brain only about two years ago due to drop foot, pins-and-needles constantly reoccurring and in weird places like my face and patches on my back, and joint pain. The neurologist was not nice at all to say the least and I dismissed the symptoms and I was sure they were all down to joint hypermobility anyway. I did request to be seen by rheumatology to be assessed for EDS but they refused saying there was no point as there was no treatment for hypermobility.
I’ve just lived with the symptoms until about february this year when I got the pain in the back of my neck and things started getting bothersome. I asked the physiotherapist if hypermobility could cause all the problems and it was a trapped nerve from it but he said definitely not so oh well.
I went on this site originally a few years ago when MS was suggested in the hope to get ideas on how to live with some of the symptoms as, even if its not MS, the symptoms still overlap. I have been looking at ataxia sites as well as my symptoms are ataxia symptoms but there isn’t much about ataxia at all really.
I stuggled with my symptoms before as they were invisible and people would often forget or not understand them but now my walking is a bit odd I’m worried about getting looks and it being visible! Just can’t win really haha
No point to this really apart from just making an introduction of myself I guess.