41 year old female in need of advice

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Jane9959

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Hi and thankyou in advance for taking the time to read this post.

I am a very worried 41 year old female from the UK. My symtoms started when I was 30 with an unexplained all over body tremor which I first noticed in my hands and my face when I smiled. At this time my GP sent me for an MRI of the brain and it came back normal so I just got on with things.

Fast forward 10 years where I just ignored the tremors although they never went away. In 2020 my symptoms started to progress. My right arm became very cold and the tremor much worse . I cannot hold my right arm out now without it shaking like crazy. Another visit to the neurologist who diagnosed dystonia .

A few months passed and I started to feel like I could not hold my head up. To the point where I had to work with my head in my hands at my desk and felt I needed to lie down constantly. My bladder also now feels different like I don’t feel it filling I just get an urge when I need to go.

I also have twitching all over 24/7 and after exercise it feels like I have butterflies in my legs.

July 2021 my mouth symptoms started . It started with a really dry mouth and feeling like one side of my tongue was different to the other. Since then this has progressed to now feeling like I don’t have enough saliva and my tongue feels like it is being pulled. My jaw tremors all the time now and my GP recently diagnosed TMJ.

I can still speak but it is a real effort to get my words out. I went to the neurologist in Nov and he couldn’t find anything on my physical exam. I had an emg / nerve conduction just before Christmas . It was very quick and he only did my right arm. I did not get any results from this except a letter to say it was entirely normal.

This did make me feel better but now I cannot eat or speak without catching the inside of my cheeks with my teeth and when I talk my bottom and top teeth bang together.

Any thoughts would be very welcome. Thankyou very much for taking the time to read my post.
 

affected

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So sorry you have suffered so many widespread issues for 11 years without a diagnosis.
I can imagine it has you grasping at any straw you can think of.
It certainly seems you have been cleared of ALS and also PLS, and really what you describe fits neither disease.
I wish you the best working this out, I am guessing you are now unable to work at all by the severity of what you describe.
 

Jane9959

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Jan 17, 2022
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Thankyou so much for your reply. I do still work from home on a laptop but it’s not easy, I have two teenage children and a mortgage so not working isn’t an option. Thankyou again for taking the time to reply.
 
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