I have a diagnosis of Blepharospasm for my eyes, though the blinking doesn't cause any pain. But I have also had cramp like pains in my right arm, and the pain was pretty severe for 6 weeks. But once I took Mestinon the pains in the arm went away, and the spasms in the eyelid have slowed by more than 50%.

I don't know how or why it happens but yes MG can cause pain.
Cold hands and feet. Are they actually cold or do they just feel cold to you. I have often felt that my hands were cold, but other people said they were warm to the touch and when I had an EMG done, they wanted the skin temp up to 32C, they were surprised to see that my resting skin temp was 31C although I felt cold.

Whew...thank you all for your replies. Sorry for the delayed gratitude...my daughter commandeered my computer for a time.

Lots of pain. Lots of spasms, cramping, aching, etc. Seeing a neurologist next month. Hopefully something comes of it. I have a feeling he'll give me a Tensilon test. What's that like? Anyone feel willing to talk about your experience having one?

Thanks again

I can tell you what I know of the Tensilon test. I had one in 2001.

MG experts like to do a "double blind" one, where the doctor performing the test doesn't know if they're injecting saline or Tensilon. That's kind of funny since many patients can actually taste saline (if they've had it injected before) when it's injected and know the difference!

Some doctors—which I think is fairly reprehensible—even throw Atropine into the mix (which makes MG worse). Yes, doctors have Atropine on hand to counteract an adverse reaction to Tensilon, but giving it during a test skews the results!

They can inject anywhere from 1 to 10 mg. of the drug. My diagnosing neurologist, who is a MDA director and MG expert, only had to inject 2 mg. of the drug to see results.

They should do a clinical exam of the muscles with the most obvious weakness (i.e., ptosis) before the injection, during, and after.

The drug is fast-acting and wears off quickly. A dramatic change in muscle strength is pretty telling. I felt my eyelids pop up in under one minute. I even looked in a mirror to prove it to myself!

Since the drug is stronger than Mestinon, you can have side effects from the injection (depending upon how much they inject). Bradycardia is a common one. You can also have other overdose symptoms such as increased saliva, increased weakness, etc. Make sure that the doctor performing the test knows of ALL your medical conditions and other drugs you're taking, even over-the-counter ones.

I became even weaker after the test than I was before, so watch out for that reaction, too.

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)?

I hope that information helps. Good luck with the test. BTW, I felt so awesome for those few minutes—I wanted it to last forever!

Annie

http://neuromuscular.wustl.edu/mtime/mgdx.html

http://www.youtube.com/watch?v=CifH6_Uj2uE

http://pn.bmj.com/content/2/3/173.full.pdf

This is a pretty cool video of a dog that had a positive tensilon test.

http://www.youtube.com/watch?v=k7YX9kuWrxA

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

Annie

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!

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!