Hey FlexMissile99,

I am sorry to hear that you are going through that. Sculptor44 mentioned the detail you have of your symptoms. I think that it is good to keep a record of that sort of thing (if you know what it is or not). I believe it helps with treatment. I am not a doctor, nor do I know if this information will be helpful. You described how you were having muscle twitches and I found this article on muscle twitches and some of the causes of them.

[I was unable to add a link, but if you use a search engine and put in: "Muscle Twitch (Myoclonus): Types, Causes, Diagnosis & Treatment" and if something from Cleveland clinic came up and that is what I am referencing] **I have no ties with them, but it seemed like a reputable source.

Perhaps, something in the article will be beneficial to you.

Flex, I hope that a doctor does accurately diagnose what you are going through and give you an effective treatment to stop it.

And lastly, I hope it is not this, but has “gullain-barre syndrome” been ruled out?

Johnn

If you do find out and are comfortable sharing, please let us know.

Thanks for getting in touch John. Unfortunately, I'm based in the UK and don't have the funds to travel so US clinics are not an option. I certainly share your hope that I will be diagnosed soon and that it is something treatable or else not immediately fatal, but I must admit I have my doubts - the signs look ominous. I think given that my issues are not localised to the hands and feet like normal in Gullain-Barre, and that I have tested negative on several autoimmune tests, it is unlikely to be this. Sadly, the only things that seems to fit the symptoms is ALS, but I have been told this is very rare at my age, and that my relatively slow progression and lack of severe disability at this stage augurs against this (although young people do tend to have slower progressions).

Flex

Welcome, FlexMissile99 and Johnn!