Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Sarah100 05/01/2009

Is anyone worried and/or spoken to your doctor about how this new flu might affect a MG patient? I've read that some of the primary symptoms are respiratory so I'm concerned for my daughter. Are the anitviruals ok with the MG? What about treatments such as albuterol for respiratory symptoms? Any thoughts? Thanks. Sarah

deleted_user 05/04/2009

I've been wondering the same thing. I worry about going into crisis. I know that any type of illness, even a cold, exacerbates my MG symptoms and it takes much longer for me to recover than most people. Maybe a call to the doctor would put your mind at ease. Can't hurt.
Best to you and your daughter.

deleted_user 05/04/2009

I was told by a person who knows(scientist) that I should be taking vitamin C now, and if I felt fluish to start Elderberry pills right away, found in the health store about $16.00. It sounds like it might help with any type of flu etc. anyway I bought a couple of bottles for you ever might get with any family member. L

416.00

deleted_user 07/24/2009

This is my story, I presented with sinus infection like symptoms in April, JUST as it had come to Queens, NY where I had been days prior. My ENT gave me Tamiflu.

I have been told by my neuro that I have an approximately 7 x higher chance of dying from swine flu, this is based on MY SPECIFIC stage of MG and other factors (I am obese), I am also 27. That number doesn't give me oodles of comfort but I proceed. I'm keeping sanitary, wash hands/purell, avoid the sick, etc. Also wear an N95 respirator mask that the CDC recommends if I go to the hosp for plasmapherisis. A word I cannot spell.

Again this is my "Pandemic Avoidance and Information Plan" anyone with a compromised immune system, or pre-existing condition should have one, and get proper advice from your Doctor. If you cant get in for an appointment, call and ask to speak with them, most likely youll have to leave a message but its worth it.

Be safe.

Sarah100 07/24/2009

We just saw pediatric neurologist who said that MG patients should be "first in line" for the upcoming flu shot, even though my daughter has had some reaction issues in the past. Thanks. Sarah

deleted_user 07/25/2009

I'll take my chances with the flu and avoid the shot.

deleted_user 07/29/2009

My daughter has also encouraged to have the regular flu shot, ( actually she has always gotten it) and also the swine flu immunization...due to being on the immunosuppresent Imuran puts her at a much greater chance of severe swine flu disease. She will have the immunizations.

MGbirdlovr 08/20/2009

Hi Ladies,
I think I have gotten the swine flu, it presented as a sinus infection and body aches - but the main complaint is - it is Painful!!
I am pretty sure that this is the bug I had, My son's friend was diagnosed with swine flu - where they take a slide - and the way he explained his flu symptoms - so painful, a young man!
Others in the Southern Cal area have gotten the swine flu, it seems to pair with meningitis, or pneumonia. This one is Ugly.
I don't know if I'd get the vaccine yet,
maybe I am lucky to have been infected.
I am affraid for the population at large, however. Everyone be well.

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