Agnostic.com

5 6

I have my best realizations at 4 am. For instance just now I solved a mystery that has been haunting myself and my doctor and my OT for MONTHS.

Why am I losing the use of my hands? Well we shall all feel incredibly stupid when I tell them "oh yeah, a year ago I was diagnosed with multifocal dystonia...you know the progressive neurological movement disorder? The one that causes my muscles to spasm uncontrollably? The one that is frequently common in EDS patients? That CAUSES DYSTONIC TREMORS?"

Yeah we shall all feel incredibly stupid. I mean, it doesn't cure it but at least now they'll stop calling me an anomaly because it makes sense now. LMAO I feel stupid. It'll save money on diagnostic tests now that I've realized the cause.

Luckily I'm seeing the neurologist on the 26th to work on a treatment plan for the dystonia, so maybe once it's being actually treated it'll slow the tremors or even reverse them a little. That would be lovely lol.

My god I cannot believe my GP didn't see that correlation.

Well time for a muscle relaxer and sleep. Goodnight heathens and heathenettes (and non-binary heathies)

LadyAlyxandrea 8 Mar 14
Share

Enjoy being online again!

Welcome to the community of good people who base their values on evidence and appreciate civil discourse - the social network you will enjoy.

Create your free account

5 comments

Feel free to reply to any comment by clicking the "Reply" button.

0

I love this: "Goodnight heathens and heathenettes (and non-binary heathies)"

My wife had three doctors, each had a third of the puzzle. One day she said something to one Dr that another had said and then her GP called for a conference and they sussed out her problem: TMJ. I know, minor compared to yours, but unfortunately it does happen that the medical left hand doesn't KNOW what the medical right hand knows.

I am hoping that this gets better as information flows more freely behind the medical firewall (I know right now the privacy issues are such that it's actually making it HARD for Drs to compare notes, but I dream of a day...)

1

When you have a ton of dxs it's so easy to forget about one!

Been there done that.

Hang in there!

1

My doctors argue about my hands too. Scleraderma vs graft vs host disease. Spasms and can't straighten fingers out.

2

Knowing is half the battle, yes? I'm glad your docs have finally figured this out, and that the treatment options work well for you. Hang in there!

3

You know your body better than anyone else. I hope things work out well when you get treated.

Write Comment
You can include a link to this post in your posts and comments by including the text q:36861
Agnostic does not evaluate or guarantee the accuracy of any content. Read full disclaimer.