Questions about your experiences
 

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)

Thanks
 

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

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.

I have intermittent pain located above and behind my Right droopy eye. i'm not sure if it is MG related though, as I have had several episodes of uveitis in this eye.
I have no change in reflexes to my reflexes as far as I know.

I had one EMG which was not definitive. Rather than have a SFEMG which I understand is very time consuming my neurologist elected to do a tension test which was strongly positive.

I have negative antibodies and MUSK antibodies and my CT was negative

Hi Geode!
 

Been a while for me as well......

1) YES! YES! YES! Painful to the point of tears! It is stll one of my first signs that I need more IVIG! I also had to hold them up while driving my son to school or picking up my niece. TRY putting a cold can of soda on your eyes and see how they feel! It worked wonders for me!:D
2)Reflexes were dulled.....waaaaaaaaaaaaay dulled!
3) I was given all of the tests you mentioned and had every one - antibody count was over 600, EMG - again positive - positive across the board..
4) EMG's hurt - but it was worth it!
5)When I was dx'ed it was time to go to ICU, so most of it was a blur.

Hope this helps somewhat!

Hugs!
Erin

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.

VGKC links
 

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