Doctor’s Update

[zerohours000]

My recent doctor told me he is leaning either rheumatological or neuromuscular.  Neither sound particularly good.  I have never been diagnosed with Dysautonomia so this is not a shock I suppose.  My most recent symptoms are these weird muscular jerks before going to sleep, and only when going to sleep.  But I do have a twitch now in my left hand hand, in my ring and pinky finger.  A twitch in the sense that it bends inward to the palm, so twitches towards the palm.  Could be nothing, overuse of my phone, or like the doctor said—neuromuscular.  All very depressing.  I’m only 33 and I feel just so sad like I already died.  Sorry to be a bummer.  Just feeling alone and bummed.

[DizzyGirls]

When you are going to sleep... that would most likely be when the sympathetic is supposed to relax and parasympathetic takes over.  Sounds like yours isn't working like that.  My daughter's pain and tremors seem to come when she is at rest or in the evening and at night, especially when she is trying to go to sleep.  Hang in there!

[zerohours000]

2 hours ago, DizzyGirls said:

When you are going to sleep... that would most likely be when the sympathetic is supposed to relax and parasympathetic takes over.  Sounds like yours isn't working like that.  My daughter's pain and tremors seem to come when she is at rest or in the evening and at night, especially when she is trying to go to sleep.  Hang in there!

I don’t fall asleep until like 3:30 am.  Thx.  Im trying buy it’s so hard.  

[bombsh3ll]

Hi zerohours000,

I know you are worried but what you describe, the hypnagogic jerks and finger twitching can be completely benign. I have had both for many years whilst I was still living a happy and healthy life for about 14 years before my POTS onset. The latter is known as BFS or benign fasciculation syndrome. I'm not even sure these things are connected to dysautonomia, just like people can have other things like asthma, and then get dysautonomia as well. 

I had myself worried sick at the time re the twitching for about a year, thinking I had some kind of terminal illness like ALS that I would die from. It wasn't disabling though just a nuisance which didn't stop me from doing anything, and I wish I hadn't wasted that precious time in my youth worrying about something that was literally nothing. 

I hope your tests will come back clean and put your mind at rest about these two symptoms at least. 

B xx

 

 

 

[zerohours000]

1 hour ago, bombsh3ll said:

Hi zerohours000,

I know you are worried but what you describe, the hypnagogic jerks and finger twitching can be completely benign. I have had both for many years whilst I was still living a happy and healthy life for about 14 years before my POTS onset. The latter is known as BFS or benign fasciculation syndrome. I'm not even sure these things are connected to dysautonomia, just like people can have other things like asthma, and then get dysautonomia as well. 

I had myself worried sick at the time re the twitching for about a year, thinking I had some kind of terminal illness like ALS that I would die from. It wasn't disabling though just a nuisance which didn't stop me from doing anything, and I wish I hadn't wasted that precious time in my youth worrying about something that was literally nothing. 

I hope your tests will come back clean and put your mind at rest about these two symptoms at least. 

B xx

 

 

 

Thanks.  I had an EMG in June — normal.  I guess I’m just worried about Parkinson’s. But I’ve alsi heard adult Celiacs can present neurologically.  

Money neuro already said it was BFS and I basically believe them.  So it’s just the other one I’m concerned about.