Mine does how carpel tunnel
In both hands. But that's it.

Yes I have been to rhumatology and endocrinology
Extensive testing done.
My recent test done by immunologist showed elevated Ige iga( not that much)
And igg

So the docs says there could be related to this or not. The specific autoimmune testing are normal.

I haven't had the expensive blood for neuropathy with Athena.
No insurance

I am taking cal mag and d3.
My blood has never been low or high on calcium.
Magnesi recently was normal.
D3 goes up and down.
My 25 Hr urine was low calcium but doc just said Dosent mean anything!!
Pth levels are normal and so is ionized calcium

I have started acupuncture. Second treatment tomorrow.
Some one suggested try pedialyte?

Neuro said if this is an ion channelopathy like Isaac syndrome then mag and cal Dosent help.
But I don't know...

I can't get comfortable. Nerves gone wild!!
T

My whole body is super stiff and trying to make any movements thru that causes more twitching and stuff.

Coping with this is hard. Especially thisnis since I was 19!
And now 32. Can't believe how time passed.
I take comfort in fact I can walk talk eat swallow smell
Touch and live my kids.

My parents have moved in and
My mom cooks and listens to my crying without any issues and prays for me All day. I pray her prayers get answered.
My husband is supportive but
It's still sad.

I did everything regardless of this until last year.
I cried I went to the docs and didn't use to tell any one much about this.
I volunteered at my kids school. I remember playing with the kids and getting stabbed and smiling thru it.

But it got the best of me last year. I think it brings us down more emotionally.
Yes it' hurts but my god the not knowing is hell

Plus I can deal with this. I even use to this okay whatever this is how my nerves are. I won't let it get to me.
But when it hits my throat and face and front chest and ribs just spirals Me down in depression and being so scared.



So that's that.
I try meds but thy all on low dose right now

@ Tulip,
Could be a start. There are options for treatment, but its big bucks. Insurance issues are the dictators of our treatment it seems. I have more bloodwork ordered, some I think I've had already. Now I am getting all those rare antibody studies for Paraneoplastic Cerebellar Degeneration (which I know I don't have cause they said cancer and myeloma was ruled out) and are being tested because they are on the blood work list of things to do. If I had no insurance, they would not even be considered. It not that they want to make money, it just that it's a big teaching hospital and tests are a teaching tool.

I have a similar problem with cramping. It is much better than a year ago when I couldn't do much of anything without cramping up, no burning though. Now when I lift my right leg, I get the charley horse in my abdomen. My pain is intermitant electrical shocks down my right hip and leg, shocks and pain down the back of my legs. I have herniations in the neck and thorasic spine (waiting on the reports to be sent to me) which the neuro thinks has some mild pressure on my cord causing mild brisk reflexes. The twitching is all over from the shoulders down which my doc says is from spinal irritation of any kind, be testing, mechanical, whatever.

I too have a dreadful fear of having anything start up in my face and throat. I can understand how distressing this must be. I thought I saw something about a Bruxism neuropathy on the the list of what else can go wrong with PN, but I do not have the link saved. Really scarry. My prayers for you.