Name of doc good with seronegative MG?
 

If you have a name, please post or PM me.

I've been in an almost year long journey to get diagnosed. I have seen four neuros, all who say my muscle weakness symptoms act like MG but I fail to test strikingly positive for it.

I have a huge response to Mestinon, even a low dose. When I go without it, my breathing and voluntary muscles become extremely weak.

My AChR is normal, as is my MuSK. My SFEMG was "normal", as performed by a local (Minneapolis) MG expert. I've had two abnormal EMG's, one on the face and one on the arm.

I've also seen a rheumatologist, who tested for glycogen storage disorder and polymyositis.

Like anyone would be, and as a full time working mom of two little boys, I'm tired of this. I feel about 20% of myself, yet no docs can diagnose it. I am near Mayo clinic but hear from others that they're not so good with seroneg MG. Running out of places to go... the huge response to Mestinon, along with feeling better after much rest, is what keeps me considering MG.

Thank you friends,
Tricia

I would consider consulting Dr. Michael Benatar.

I do not know him personally, but he is not afraid to write what he thinks in the published medical literature. He is one of the only neurologists who openly discusses the limitations of the currently available tests and criticizes results of clinical trials in MG. He seems to me one of the more thoughtful and open-minded neurologists.

http://neurology.med.miami.edu/x210.xml

Dr benatar is at university of miami by me. My doctor speaks highly of him. You will have to wait about 2 months for appointment though. On side note I strngly suggest you do not see dr sharma who works under dr benatar

I joined nearest mg support group and dr benatar is going to be speaking at either the october or nov meeting

Thank you both for the suggestion.

This morning I phoned Dr. Benetar's office and spoke with a receptionist in Neruology, requesting Dr. Benetar's nurse's contact information about possibly doing a phone consultation about my case history. That way, she can go over it with him and together we can determine if my traveling from MN to Miami is a reasonable option.

Tricia, Why not go to Mayo? Does your insurance cover it?

What part of the body was the SFEMG done on?

If the EMG was abnormal, why aren't they considering MG?

It would seem to me, since you had such a strong response to Mestinon, that a Tensilon test would be a good idea. They could do breathing tests before and after Mestinon too.

Do you have ptosis, so that they could do a before, during and after photo of it during a Tensilon test?

Have you seen a neuro-ophthalmologist? Dr. Alan Weingarden of The St. Paul Eye Clinic is very good. I'm not sure if they still do Tensilon Tests but you could call and ask.

http://www.stpauleye.com/MeetOurStaf..._S._Weingarden

I think a thorough evaluation with a pulmonologist before seeing another neurologist would also be a good idea. Then you will have compiled the opinions and facts from two other specialties before you again see one.

Sometimes, the MG antibodies don't show up right away. And they can come and go! That's why MG is a clinical diagnosis backed up with tests. It doesn't act like other diseases (usually).

Well, those are my thoughts. I hope you can get some more evidence that will pry open the mind of a neurologist. ;)

Annie

Thanks for the pointed questions Annie.

The sfemg was done on my forearm only. I'd stopped mestinon four days prior.

I have seen a neuro opth, Dr Lee at the U. He was examining for MS. The visit didn't go well...he interrupted me a lot.

Each neuro that I've seen has wished me luck and sent me on without a dx. I'm not married to MG, but the response to mestinon is the only thing I have to go on.

I've had a cardiopulmonary workup, and the pulmonologist said "could be representative of a neuromuscular disorder". That was his last note too.

I don't have a frank ptosis. One lid droops more and I have blurry vision due to the eye muscles being weak.

As for the mg antibodies, they've been tested twice so far. I'm sure they will be tested again over time.