New to MG. About to have tests with a neurologist. Along with many strange irregular blood tests, I have high AChR Blocking Abs.

Although lethargy and weakness IS an issue (constant, to varying degrees, and has been debilitating on more than one occasion) I also suffer from a great deal of pain.
Is this true for anyone else here? I've been hearing all about the weakness but not so much pain.

Thanks!

-Three years in

My doctor says that MG does not cause pain. He also can't tell me why I have so much pain. I will be interested to see other responses.

The neurological/ physiological process that causes MG does not cause pain. But I would wonder if
1. other body parts; bones, tendons, cartilage, etc. are overused to compensate when we are fatigued/weak.
2. other auto-immune diseases are present and causing pain.

So many MGers say that they have pain-it's the medical professional world that says they don't.

I had severe leg pain until my neuro-muscular Dr said it was the statins I was taking. He said statins was one of worst drugs we have. After I stopped the statins the pain vanished.
Mike

I am still in the process of getting a diagnosis, but I do have all the typical MG symptoms except for double vision and have started Mestonin. I have a lot of joint pain and injuries, especially in my back and shoulder and hip on my side that is weaker. I believe it is from my muscle weakness and the lack of support my muscles provide to my joints. Makes sense to me. I also do get aches and pains, icy cold hands and feet and get shaky when I am having a bad episode. Other than that I have not had any other pain so far.

This thread shows a possible inflammatory marker in MG.

http://neurotalk.psychcentral.com/thread211489.html

When muscles are weak, they can cramp or spasm. That causes pain! It's a secondary symptom of MG, one which doctors often don't acknowledge.

Think of a marathon runner or other athletes and how their muscles can get tight, cramp, or spasm. It just happens sooner in MG.

Sadiecl, Have you had your thyroid checked? The icy cold, etc. sounds more thyroid related to me. Or circulatory. Or not enough oxygen.

Don't assume the pain is MG, though. You might want your thyroid and B12 checked as well.

Annie

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