What tests should I ask for?

[Ernie]

Hi,

I am getting prepared for my neurologist apointment Thursday and I would like to know if any of you have any suggestions on the tests that I should ask my neurologist to order.

My symptoms are muscle pain, muscle weakness and paralysis.

Thanks for your help.

Ernie

[steph37822]

oops

[calypso]

I also had an EMG, and this is probably a good first step for you. It's a little painful at times but you will know right on the spot usually whether something is/isn't working, because the doc performs it him/herself.

A muscle biopsy is the gold standard, but it's somewhat invasive. Another possibility is that you'll be like me and test totally normal, despite the fact that you may be severely limited due to the weakness. I have lost about 2/3 of my strength and still test normal. Go figure. I sure hope you get some answers, Ernie.

Amy

[DawnA]

A muscle biopsy is the last step in diagnosis. A skin biopsy done in a dermatology office can also tell a lot and that is usually done before a muscle biopsy. That little piece of skin can give a lot of information. If you have not had an EMG, definitely ask for one. Your Emg can be normal and you still may have muscle disease. You should have some metabolic blood tests run to, such as CPT, CPK, urine organic acids...Your periodic paralyisi sounds like a metabolic myopathy. I recommend a web search on metabolic myopathys. Keep us informed regarding your appointment.

Best Wishes,

Dawn

[Ernie]

Thanks Amy and Steph for the advice on testing. I wonder why EMG don't show why we have muscle weakness. It might be something else than the electrical current that is not working. I hope that they have other kinds of tests that will show what I have. I'll keep you posted.

Ernie

[Guest tearose]

Wow, Dawn, I just did a websearch on metabolic myopathy like you suggested for Ernie and all us with similar concerns. I still have more to process but thank you! Thank you!

Ernie, did you get a chance to do some research? Have you ever had any elevated CPK ? or other elevated levels?

Ernie, I'm wondering if you could ask for the neurologist to do some metabolic screening.

This could be just a leap or a coincidence, but my two sons had myoglobinuria after surgery and this is either a reaction to the anesthesia (MH) or it could be signs of a metabolic myopathy!!!

I seem to learn something new here every day!

Ernie, I hope this neurologist takes the time you need and makes many helpful suggestions for resolving your muscle issues. I do want to know all about your visit!

Good luck tomorrow, tearose

[Ernie]

I am sorry Dawn, I don't know where I was looking or where my mind was but I just saw your post. Thanks for your suggestion and thanks Tearose for pointing it to me. I don't know if it's brain fog or shear panic.

I did a short search on Metabolic Myopathy and it surely looks like my symptoms. Even though I have the POTS and NCS diagnosis and I am as desperate as I was before getting those diagnosis. It's like I can't think straight or as if I had a gun pointed at my head.

I know it is physical because there are at least 4 of us in my family that have this muscle weakness problem.

Please pray for me so that I finally get my diagnosis, especially since Metabolic Myopathies are treatable. I want so much to have a better quality of life. I know you guys know what I mean.

Good night.

Ernie