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Old 10-23-2015, 01:39 PM #11
scrubbs scrubbs is offline
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Default 4 more days

Thank you again for your response. I see him on the 27th.
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Old 10-23-2015, 02:12 PM #12
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Please what ever you do DO NOT let him or her rush you untill YOU feel all your questions and concerns are answered. I've had a couple docs come in and ask few questions and slam bam thank you maam and out the door before I could ask THEM questions.
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Old 11-02-2015, 10:33 PM #13
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Juliejayne and jvaagen: Thank you very much for your responses.
The new Neurologist seems interested in helping me and set up my first IGIV for tomorrow. Maybe because he really respects the DR. from UCLA that referred me to him.
jvaagen: if anyone did not take the proper time it was me. There were questions I wanted to ask but did not make notes first.
Most importantly, I seem to be the only person with a positive diagnosis of MG that has had a negative effect from Mestinon.
I know there some people with MG that do not respond in a positive way to Mestinon but never a negative response.
Especially 1 single 60 mg tablet on 3 separate occasions over a 6 day period.
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"Thanks for this!" says:
juliejayne (11-03-2015)
Old 11-03-2015, 10:31 AM #14
TXIzzy TXIzzy is offline
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Default maybe not the mestonon at all

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Originally Posted by scrubbs View Post
Had my blood work done last month. I have not been taking mestinon for some time now. Blood work came back positive when I went to UCLA last month so was told to start taking it again.
See a new neurologist next week now that I am back home. Maybe he may have some answers but the fact is I took a single mestinon on 3 different days that promoted trouble chewing and other symptoms including some difficult breathing.
High probability that this has never happened with a person with a positive diagnosis.
My hubby has been dealing with MG for almost a year...He has tested positive,started with mestonon and is now on CellCept. The mestonon only took care of the drooping eyelid, while he needed the stronger meds for the double vision. It just seems to me that if your symptoms are worse it is probably the MG itself....the one thing we have found about this disease is that it is very unpredictable, and no two people are even the same. But you may have to suggest something stronger. Also several people here said how important it is to check the B 12. He was checked for that and it was low borderline, so he is on pill for that also. Hope this helps.
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