Hi again, it's been awhile.

To refresh your memory, I'm a 42-y.o. woman with episodic weakness spells, sort of resembling MG but sort of resembling Periodic Paralysis. I also have episodes of sustained muscular spasms that don't seem to fit in anywhere. Going on 11 years of seeing doctors with no diagnosis. I would like to ask more questions about your various individual experiences in order to better prepare for my next neuro visit.

1. Do any of you who have eyelid weakness also have problems with eyelid pain? If so, to what degree? I started having eyelid pain in 6th grade, severe enough that I would press my face into my desk at school trying to get some relief. Can anyone relate?

2. Do you have any changes in your reflexes? Brisk? Diminished?

3. Were you positively diagnosed by antibodies, EMG, Tensilon test, something else? How long did it take?

4. What have been your experiences with EMG's? Have you had a positive result, was it on the first try?

5. What have been your experiences with antibody testing? Has anyone been tested for anti-VGKC antibodies? Know anything helpful about them? I read the Mayo Clinic protocol for MG testing, and couldn't understand it; do they expect VGKC ab's to coexist with AChR antibodies, or do they test for it in the absence of a positive AChR-ab test?

Thank you for your input,
Geode

1. Do any of you who have eyelid weakness also have problems with eyelid pain? If so, to what degree? I started having eyelid pain in 6th grade, severe enough that I would press my face into my desk at school trying to get some relief. Can anyone relate?

2. Do you have any changes in your reflexes? Brisk? Diminished?

3. Were you positively diagnosed by antibodies, EMG, Tensilon test, something else? How long did it take?

4. What have been your experiences with EMG's? Have you had a positive result, was it on the first try?

5. What have been your experiences with antibody testing? Has anyone been tested for anti-VGKC antibodies? Know anything helpful about them? I read the Mayo Clinic protocol for MG testing, and couldn't understand it; do they expect VGKC ab's to coexist with AChR antibodies, or do they test for it in the absence of a positive AChR-ab test?

To answer your questions:

1. no. I have not experienced such symptoms.

2. I have normal-brisk reflexes.

3. I was eventually diagnosed by the combination of direct measurement of muscle force and endurance, and demonstration of anti-MuSK in a newly developed test. Both those methods are not routinely used in the diagnosis of MG, and are still considered experimental by some. It took about 5 years since my hospitalization in the ICU, with the diagnosis of myasthenic crisis.

4. My EMGs were repeatedly normal.

5. As above. All my other antibody tests were repeatedly normal. The antibodies you have mentioned are for the diagnosis of LEMS.

If any of my reflexes have been dimished, I haven't heard about it but other than that, all of my answers are no and negative. But I have been tested for VGKC antibodies and I am seronegative for MG but I was negative for VGKC too.

They are struggling with my diagnosis because I do not just have MG and we are trying to figure out what else is going on: peripheral neuropathy, autonomic instability, and a host of MS-type symptoms...

don't know if that helps at all but there it is...debra

My answers to your questions are:

#1 No

#2 Yes - but only right knee - but this knee has been broken and operated on 3 times...so maybe that explains

#3 Had all the tests and they were non confirming. DX'd clinically and through positive response to Mestinon

#4 EMG - I was told it was a borderline pass. Did not conclusively show abnormality.

# 5 I was tested for VGKC ab and was negative (as I was for all the antibodies)

Thank you for your responses. I am still an alien.

Alice, everything I've found has said it's calcium channel antibodies (VGCC) that are implicated in LEMS, while the potassium channel antibodies (VGKC) are associated with Isaac's, autonomic dysfunction, Limbic Encephalitis, or Morvan's Syndrome, and sometimes MG. I'd give references, but I'm not allowed to post links. Is LEMS associated with both types?

Geode

You are right, my mistake.

Can you send links to me? I have VGKC and so many bizarre issues and cannot figure out what way to go and need medical DR.

Hello. I mailed you a couple links. If you're willing to share, either here or by message, I'm curious about your symptoms.

Geode

Geode- I do have eyelid pain! I thought i was alone in this. When my eyelids and eyes get tired my right eye gets very painful and after napping, it gets better.

I was diagnosed with EMG x 5. I was tested @ UNC, DUKE, Johns Hopkins, Neuro office, and Northwestern, all with abnormal emg. I have never tested positive for antibodies.


I also have normal reflexes.

Thank you Jeatak, Erin, and Tyson for your comments about the eyelid pain. Doctors keep blowing me off if things are atypical, so it will be good to be able to say "It can happen, there are others....please check more thoroughly before deciding I don't have it."

Erin, yes, I LOVE the cold sodas on the eyelids. Great tip. Another great relief I've found is to ride in the passenger seat, close my eyes, and let the air conditioner blow directly on my eyelids. My best relief is "Headon" applied to my eyelids, but can't recommend this to others since it may be a carcinogen.