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Old 09-28-2013, 04:52 PM #1
Gabriella Gabriella is offline
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Gabriella Gabriella is offline
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Default Medicine warning

Would love if everyone could share medicines that have aggravated their mg, I know everyone is different but I like to know what has bothered people in the past so I can keep an eye out.

I've been wanting to share my medicine disaster so others may avoid the trouble I had. For years I took a steriod nasal spray, Nasacort, for seasonal allergies, I have severe pollen/tree/mold allergies. For the last three years in the spring I ended up in the ER with severe weakness (pre-diagnosis), inability to swallow, speak, hold my head up. This last year I could not use my diaphragm or stomach muscles to properly use the bathroom or to breath well, but they had no idea what was wrong with me. After years and years of rheumatology making guesses and lyme doctors telling me it was lyme (it was not!), we found out it was MG being exacerbated by the steroid preparation in the Nasacort. Steroids help MG pts but usually only after an exacerbation period of the symptom presentation. This medicine repeatedly put me in the ER and we had no idea that I was poisoning myself. I finally pieced together the exact dates of my usage and my weakness (and horrifying weight loss, couldn't eat, couldn't move, couldn't function). I had a lot of pain too, which throws some doctors off because they don't think of mg with pain, even though so many of us have so so so much pain. My eyes didn't droop so the neurologist dismissed the mg possibility (ridiculous!!).

After many years of horrifying sickness and recovery one neurologist listened to my story and told me within 15 minutes that he thought he knew what had been happening to me. He tested me and confirmed MG, I've never cried with happiness like I did that day. My husband bought me a huge bouquet of flowers when we found out I had MG!! Then we laughed that we were actually celebrating that I had an autoimmune neuromuscular disorder, who celebrates that? We did! Thanks for listening, and please post any medications that you think may have bothered your MG, I need to gather info because I am so sensitive. This journey has been so scary and almost impossible, but I feel like finding this site and hearing your stories has helped me immeasurably, thank you everyone.
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Old 09-28-2013, 09:55 PM #2
wbdolphin wbdolphin is offline
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wbdolphin wbdolphin is offline
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Default medicine warning - great idea

Gabriella - I definitely would like to see an ongoing post thread with people's experiences with various medications. (Over the counter ones also) If you are on any other MG support group websites, I hope you post this there too. Thanks!

Of course there would have to be an ongoing disclaimer that not everyone is the same, ......
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"Thanks for this!" says:
Gabriella (09-29-2013)
Old 09-29-2013, 04:30 AM #3
bny806 bny806 is offline
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bny806 bny806 is offline
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Just wanted to say welcome.. and I can totally understand the celebration of a "managable" disease diagnosis! (I'm still considered a mystery at this point - limbo land is no fun)!

Welcome!
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Gabriella (09-29-2013)
Old 09-29-2013, 09:49 AM #4
Gabriella Gabriella is offline
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Gabriella Gabriella is offline
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Default

Quote:
Originally Posted by bny806 View Post
Just wanted to say welcome.. and I can totally understand the celebration of a "managable" disease diagnosis! (I'm still considered a mystery at this point - limbo land is no fun)!

Welcome!
Limbo is horrible, I'm going through the grateful phase that I am diagnosed mixed with the crappy realization that I have this diagnosis, it is a very interesting roller coaster of emotions!! Since it is kind of lonely place to be it is so nice to have this support group, I hope that you are out of limbo soon!!!!
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