Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


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Old 09-10-2017, 10:57 AM #1
Magnolia~ Magnolia~ is offline
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Default MG with Negative Labs

Hi,

I'm new here. It's nice to meet you all.

I've had many neurological and autoimmune problems but still have not gotten a diagnosis. (I know people here don't give medical advice and cannot diagnose--I'm not looking for that here.)

Some of the symptoms calmed down, but I am still having breathing problems and overall weakness/fatigue among other things. Most doctors seem to minimize my complaints, so I'm looking into things myself.

My question for the group is-does anyone here have MG but who had/has negative labs? At the ER, the doctor did a MG panel, and this came back negative. However, the lab result report states "a negative result does not exclude autoimmune myasthenia gravis or thymoma."

Thanks
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AnnieB3 (09-18-2017)

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Old 09-10-2017, 07:38 PM #2
AnnieB3 AnnieB3 is offline
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Hi, Magnolia! I think that patients tossing around ideas and what their symptoms are is why forums like this are so valuable. No one is trying to be a doctor here; only trying to help others figure out what symptoms may belong to MG and which ones might not.

MG is all about fatigable weakness, that is worse with activity and relatively better with rest and drugs. Does that describe your weakness?

Did they run the MuSK antibody test? Just recently, the LRP4 test has become available as well.

Do you have your test results? Believe it or not, some doctors do not tell patients the exact readings! If you don't have them, get them!

Has an internist evaluated you for thyroid problems? B12 or D deficiency? Any other general tests such as a metabolic panel and CBC? Any signs of endocrine diseases?

How long have you had symptoms? Sometimes antibody tests aren't positive right away.

If you feel like it, you could describe more about what is going on, when it began, etc.

Whatever is going on, you should see a MG expert to rule MG in or out. I hope you have answers soon.

Annie
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Old 09-11-2017, 11:56 AM #3
schavarria schavarria is offline
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schavarria schavarria is offline
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Hi Magnolia,

In 2011 I was diagnosed with mild-moderate MG based solely on my symptoms (fatigable weakness, difficulty chewing/talking, all of which improve with rest) and a borderline single fiber EMG test. All other tests were negative, and repeat antibody tests over the years have also been negative. I also don't really have any ocular manifestation, and Mestinon doesn't seem to help. Just wanted you to know that there's someone out there who doesn't have many test results to go along with the diagnosis, but in my humble opinion, I have MG.

Best wishes!
Susan
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Old 10-22-2017, 04:59 PM #4
TÉLIA AGUIAR TÉLIA AGUIAR is offline
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Quote:
Originally Posted by schavarria View Post
Hi Magnolia,

In 2011 I was diagnosed with mild-moderate MG based solely on my symptoms (fatigable weakness, difficulty chewing/talking, all of which improve with rest) and a borderline single fiber EMG test. All other tests were negative, and repeat antibody tests over the years have also been negative. I also don't really have any ocular manifestation, and Mestinon doesn't seem to help. Just wanted you to know that there's someone out there who doesn't have many test results to go along with the diagnosis, but in my humble opinion, I have MG.

Best wishes!
Susan
Hi magnolia

I have generalized myasthenia gravis with diagnosis only in single fiber electroneuromyography.
All other blood tests gave negative: acetylcholine, musk.
I already used all the drugs of the medical protocol in Brazil and I did not improve. I am hoping to come up with a new drug for refractory myasthenia. I would like to know more information of LRP4 test Sorry for the errors I'm using the goole translator.
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