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

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Old 07-07-2019, 07:08 AM #1
JessieJ JessieJ is offline
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Smile Can MG just go away?

Hello everyone,
I'm new to this group so please excuse me if I do something wrong.

I've had Myasthenia Gravis for about 17-18 yrs now. Had a very rough time for the first 5 yrs (on and off vent 7X) but have been good for the last 10 years (of course with some ups and downs). My question is because I've been fairly good can I now get negative test results? I had positive test results yrs ago but I've moved and my new Doctor wants to start all over again with testing etc (Blood and Single Fiber (needle in nerve). I take Mestinon, Prednisone and Methotrexate for my MG and had my Thymus removed about 9-10 yrs ago. Could it be possible to have negative results and possibly stop or lower my medication? Just looking for a light at end of tunnel
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Old 07-07-2019, 04:52 PM #2
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Hi JessieJ

Welcome to NeuroTalk .

I have no personal knowledge of MG but do know about autoimmune diseases from a scientific rather than clinical perspective.

Sometimes autoimmune diseases can resolve spontaneously for reasons which are poorly-understood.

All the best.
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JessieJ (07-08-2019)
Old 07-07-2019, 06:06 PM #3
4-eyes 4-eyes is offline
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I would not be willing to submit to any new testing. If my new doc did not accept the diagnosis via my medical records, I'd be finding me another new doc who would.

You wouldn't need negative testing to reduce your meds, as antibody levels have little to nothing to do with symptom severity.

Good luck.
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JessieJ (07-08-2019)
Old 07-08-2019, 05:32 AM #4
JessieJ JessieJ is offline
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Default Thank you both for responding!

I was thinking the same thing about the test, I really didn't want to go through all the testing again! I know it's been a long time since I was originally tested but It was a long road the first time I was diagnosed. I've been stable with the treatment I'm on now so why rock the boat, I really hate to go through all that again! Thank you for the encouragement, sometimes I just need that little push to stand up and say no not again.
Jessie
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Old 08-03-2019, 08:42 PM #5
susan_mela susan_mela is offline
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Default Beware

MG can only go into convincing remission. Beware!

Quote:
Originally Posted by JessieJ View Post
Hello everyone,
I'm new to this group so please excuse me if I do something wrong.

I've had Myasthenia Gravis for about 17-18 yrs now. Had a very rough time for the first 5 yrs (on and off vent 7X) but have been good for the last 10 years (of course with some ups and downs). My question is because I've been fairly good can I now get negative test results? I had positive test results yrs ago but I've moved and my new Doctor wants to start all over again with testing etc (Blood and Single Fiber (needle in nerve). I take Mestinon, Prednisone and Methotrexate for my MG and had my Thymus removed about 9-10 yrs ago. Could it be possible to have negative results and possibly stop or lower my medication? Just looking for a light at end of tunnel
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Old 08-08-2019, 12:09 AM #6
JimInMI JimInMI is offline
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Iíve had MG for about 20 years. I was diagnosed in another state and on different insurance. I started IVIG recently and my new insurance wanted a positive blood test before they would pay for it. See if this isnít the reason why new tests are needed. If this is the reason, I would think a positive blood test would be all that is required. Jim
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