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Good afternoon. Typically the disease does not progress. You were diagnosed with this?
It can, it's fairly rare disease. Do you feel like your symptoms are worsening?
And now the symptoms are worse?
When was the last EMG?
Any changes in medicaion?
Did they ever do a muscle biopsy?
Was a muscle biopsy ever considered?
Ok. It may be something to consider if things get worse. Did they ever try treatment?
Yes carbamazepine has shown some benefit in case studies
Do you take anything for the anxiety? Anxiety can be a very powerful thing and can play out with your symptoms.
All good things. Try to avoid caffeine as well.
As you said though, there is not that much that can be done so try not to focus heavily on it.
Where are you located?
Online I like the American Academy of Neurology. They are a great resource. I am not aware of a progression to ALS.
Yes. When diseases are not common the less data we have to go on.
Yes and ALS is a rapid progressor so more than 10years of your symptoms seems very unlikely.
unfortunately the body peaks in late teens/early 20s, then aging begins
Easier said than done but yes try.
Yes, it can cause similar symptoms. Unfortunately there is no "test" for it. It's a diagnosis of exclusion
CBT can be very helpful but you do have to work at it.
Yes, just follow up with that. A negative BMB is a good thing.
You're welcome. Hope just talking about things also puts your mind at ease.