NeuroTalk Support Groups - Pain as problematic as weakness?

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- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - Pain as problematic as weakness? (https://www.neurotalk.org/myasthenia-gravis/212137-pain-problematic-weakness.html)

I love that video, Celeste! It's been around a long time. I hope they never take it down!

Annie

Quote:

Originally Posted by AnnieB3 (Post 1108417)

Will they be doing the test in a hospital or clinic setting?

Have you had the CPK test? Have you seen a rheumatologist (they're the inflammatory docs)? Have you had your vitamin D tested (that can cause pain)?

Annie,
Thanks a ton!
I will certainly check out those links.

I'm not sure yet where the test will be done. I'm now thinking my first appointment with him will be a discussion in his office and he may direct me to the hospital for the test (not sure tho).
Regarding the CPK, I have had that test and the results were low.
I have also had a vitamin D test and those results were also low.

I have not only seen a Rheum, I have seen 2. Along with multiple other doctors over the course of the 3 years I've become ill (I'm sure many here have similar stories). STILL trying to get down to the bottom of what's wrong with me. I've had loads of irregular tests and many that are normal resulting in confusion for MANY doctors. :(
I think now I have finally found a doctor that can help and won't just dump me into a fibromyalgia bucket and ignore me (I have enough irregular test to show that there's something more).
Thanks again!

What's good and bad is that I don't have any facial indicators. It seems to be affecting my eyesight but not my eyelids or mouth.

Anyone else here not have any visible facial symptoms?

If I had a nickel for every time a MGer says that it doesn't affect their face but their eyesight is "blurry" or whatever, I might be able to afford irony.

Any subtle weakness in extraocular or intraocular muscles can affect vision. You might not notice that you have ptosis unless you take photos of your face and compare them. You can always see a neuro-ophthalmologist to see what they can find.

I didn't notice I had ptosis until March 2000 and I've had it my entire life. Either I didn't like to look at my face or I ignored it because it was my normal. Maybe both.

If you have breathing tests that are abnormal, that is also an indicator they can use to do the Tensilon test.

Care to share what other "irregular" tests you've had?

Annie

Hi Annie,
Good idea about taking photos of my face. I'm going to give that a try, thanks!

My abnormal tests so far are:

-ANA IFA Screen positive
-ANA 1:80 speckled
-Vitamin D low
-CK low
-Co2 low
-RDW blood count low
-MPV blood count low
-Cortisol high
-(NA) Sodium low
-(ALT) Alanine Aminotransferase low
-Some sort of nerve conduction study that was on the upper limit of normal. I don't know what that means and I couldn't get a clear answer from that neurologist-not seeing him again.
-AChR blocking Abs high
IgG Subclass 3 low
-Carnitine low
-ACTH low
-RT3 high
-B9 low
-B12 low
-Mitochondrial Dysfunction high
-Need for methylation high
-Pyruvic Acid high
-Pancreatic enzymes low
-Cis-Aconitic Acid high
-Succinic Acid low
-FlGu high
-Mathylmalonic Acid high
-2 Hydroxyphenylacetiv Acid high
-Threonine high
-Citrulline low
-Ornithine low
-Glycine low
-Ethanolamine low
-Phosphoserine low
-Behenic low
-Tricosanoic high
-Pentadecanoic high
-Eicosadienoic high

Good grief!