Jane9959
New member
- Joined
- Jan 17, 2022
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
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.
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.