One-sided weakness

JaimeS said:
No more falls! I did get an assessment from a doctor who was more willing to try some things out. She mentioned that the muscles on one side of that left leg seem barely functional, while the other side is very tense. I've started being very mindful about walking with my foot pointed totally forward when I feel weak and wobbly. It may be that some muscles aren't ennervated very well and so I've started relying on the rest of them more and more. Of course this only weakens the already-weak ones even more. By not 'leaning' or pointing my toe in an unusual direction, I hope to re-strengthen them to the extent that's possible. There are strengthening exercises as well.

This has already cut back on the number of times it gives out, though it hasn't stopped entirely.

Doc also suggested I get an EEG due to some minor lack of/decrease in sensation & response, but whooooboy I started to have one of those at Mayo and could NOT tolerate.

Doc suggested valium during the test.

Whooooboy people in my family have some serious issues with sedation. (EDS?) We don't tend to clear it. My mom is always asleep ages longer than they predict based on her body weight and is effectively in and out of consciousness for the next 24 hours. I have never been sedated and have no idea what could happen to me.

There's no perfect storm of terror for a pwME than:
  • Taking a new drug
  • At the dose a rando doc thinks is "appropriate"
  • With a rando doc who's never heard of ME or EDS or POTS
  • With the distinct possibility they'll give me something inappropriate if something goes wrong, and make it worse
  • While cognitively compromised
  • While going through something that initially made me scream in pain
So I'm at something of an impasse, diagnostically speaking. I suppose I could get some cholinergic autoantibody testing, but that's a shot in the dark.
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Did you mean EMG instead of EEG? Because EEG (electroencephalogram) does not involve putting current in.

I may have had a nerve conduction test in the past, it was a bit uncomfortable but no needles involved. i also had a muscle biopsy which tends to give very sharp cramping, and walking was just about impossible but i had to drag myself from the operating room to my car, and i was driving. (Thankful it was one on my left thigh, so driving was still possible)

i have no idea what the EMG involves (if it is what it is) but could ‘laughing gas’ be considered instead of sedation?

Best wishes and glad you have slight improvements and no more falls.
 
Milo said:
I may have had a nerve conduction test in the past, it was a bit uncomfortable but no needles involved.
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I had the sweat pressor test, an autonomic test; that just feels like prickles. It's uncomfortable but not painful: the current is low.

An EMG (you're right, EEG is something else!) they zap you with higher and higher voltage to get you 'used' to the sensation. The way Mayo does it, there are five levels of intensity.

The first zap made me scream.

The tech tutted at me and acted like I was making a huge fuss over nothing. She tried to proceed forward without my consent, thinking if she did it fast enough it'd work out, but nope. I reiterated that she needed to stop.

Now I'm told different people have different tolerances for that kind of pain, yadda yadda. But when the word most frequently used to describe a diagnostic test is "barbaric" it's probably pretty crappy for everyone. Some people submit and scream through it, apparently. Techs in autonomic said there was screaming coming from there all the time.
 
I had an EMG with and without electricity. I found it painful, the one with electricity very painful. I had severe muscle soreness directly after it.

I will never again allow ENG, EMG or anything with electricity. It only triggered pain that stayed for good. I think a nerve/muscle MRI and muscle biopsy would be illuminating, too.

During the EMG I had to actively tighten my muscle for the measurement (which was a horror with a needle in it).

Edit: Obviously doctors like to say it's not painful for most, and that one is making a fuss about it. But my impression is many people find it painful. For me, an ENG is barbaric. All this electricity stuff is.
 
JaimeS said:
So I'm at something of an impasse, diagnostically speaking. I suppose I could get some cholinergic autoantibody testing, but that's a shot in the dark.
Click to expand...
@JaimeS Here is a test from Quest and one from Mayo that includes AChR/ACh antibody testing if that helps. perhaps your PCP can order one of them for you if you haven't had them done. I'm no expert, just quoting what I've read other people have had - there may be better tests............

Neurological autoimmune antibody test panel from Quest.
https://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=93888&searchString=93888

This is the DYS1 Mayo test
https://neurology.testcatalog.org/show/DYS1
 
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