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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)
-   -   MuSK came back negative (https://www.neurotalk.org/myasthenia-gravis/228593-musk-negative.html)

juliejayne 11-15-2015 09:36 AM
Quote:
Originally Posted by AnnieB3 (Post 1183379)
But the only diseases that cause FATIGABLE weakness are MG, LEMS, or a CMS.

Have you been to a neuro-ophthalmologist? They can do specific tests to check for fatigable muscle weakness.

Has any neuro seen fatigable weakness on a clinical exam?

Have you been to a pulmonologist to see if you have fatigable breathing issues?

Annie
Oh how I wish I could take this into my next neuro appointment... Been to a neuro-ophthalmologist... blamed dv on blinking, but I still have the DV, though no more blinking. Didn't seem able to check for fatigable muscle weakness.

Neuros have seen fatigable weakness on a clinical exam, but the bloods were negative.

Couldn't complete the tests at the pulmonologist due to fatigable breathing issues.

No droopy eyes, so I clearly don't have MG!!!!!!

Dutch specialists suck.

mg_candi 11-17-2015 10:47 PM
Everything I read on MG only says "usually" droopy eye. I don't know if you don't have that if it excludes MG. LEMS is a simple antibody test.

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juliejayne 11-18-2015 09:27 AM
Quote:
Originally Posted by mg_candi (Post 1184150)
Everything I read on MG only says "usually" droopy eye. I don't know if you don't have that if it excludes MG. LEMS is a simple antibody test.

Sent from my SM-G900V using Tapatalk
What you have read is correct. A large percentage of MG sufferers don't have a droopy eye. However my experience is that without the classic droopy eye, it is much much more difficult to get a diagnosis.

mg_candi 11-18-2015 09:46 AM
You said. "No droopy eyes, so I clearly don't habe MG!!!!" And assumed you meant it. I didn't read the sarcasm. I understand now. Yes. I think my doc is stuck on MG only BECAUSE of the droopy eye. She won't do a lot of other tests even though I am seronegative. I had a positive LEMS test but she said it must be false positive because of the lab where it was done. Now it's neg but I am immune supressed. I have such lower limb weakness so bad it really seems more the real thing then MG. Just glad mestinon is working for me.

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juliejayne 11-19-2015 06:22 AM
Quote:
Originally Posted by mg_candi (Post 1184204)
You said. "No droopy eyes, so I clearly don't habe MG!!!!" And assumed you meant it. I didn't read the sarcasm. I understand now. Yes. I think my doc is stuck on MG only BECAUSE of the droopy eye. She won't do a lot of other tests even though I am seronegative. I had a positive LEMS test but she said it must be false positive because of the lab where it was done. Now it's neg but I am immune supressed. I have such lower limb weakness so bad it really seems more the real thing then MG. Just glad mestinon is working for me.

Sent from my SM-G900V using Tapatalk
Sorry... yes sarcasm... unfortunately there is no smilie to indicate exasperated frustrated sarcasm. Sorry. :wink:


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