Myasthenia Gravis

[livingwith]

I’ll shorten the name of the disease because I can never spell it right.
The G is for “Gravis.” I’m having a little trouble swallowing today and lots of saliva lately.
In February I had a crisis and I’m really fearful of that happening again - six days in ICU.
Does anyone have a suggestion as to when it is time to see a doctor regarding an operation (thymectomy)?
Thank you....Read the full article

[red]

I’ll shorten the name of the disease because I can never spell it right.
The G is for “Gravis.” I’m having a little trouble swallowing today and lots of saliva lately.
In February I had a crisis and I’m really fearful of that happening again - six days in ICU.
Does anyone have a suggestion as to when it is time to see a doctor regarding an operation (thymectomy)?
Thank you.[hc_livingwith=livingwith.neurologychannel.com|/myasthenia-gravis/20070625_1094||20070625_1094]READ[/hc_livingwith]
I have "G" also except that My thymo is fine and then I am allergic to a lot of the medicine, its really scarey when you can hardly swallow or chew. I have lost 50lbs since this started in March of 2007. My doctor had an MRI done to check the thymo, he advised if it would have been enlarged that they would do surgery right away and not wait. I would check with your doctor. I was told there is no cure just medicine and blood cleaning (filtering)

[annawaliszewska]

The best docs in NY say ASAP, the earlier, the better.
My daughter age 24 was diagnosed in June, had surgery last week.
I wonder why her. She was healty and very active. But as a 7 days old infant she developed phneumonia and was treated with large amounts of antibiotics. Also she had her tonslis removed at age 9. Did anyone else had the same problems in the past???
@nna Waliszewska

[skelley28]

I went into crisis at 18, my thymus is fine. It's been tested several times. I have seen doctors at OSU, and they don't think I need the surgery. I was in remission for about 5 years or so, this year being by far the worst. They still dont' want to do the surgery. They tell me that they know it has something to do with the condition but they don't have enough evidence that would recomnded the surgery. Its like open heart, they have to break the brest bone. They told me that it's a 50-50 chance it would help. I have responded well to the medicine's. They have evidecne that some people have improved but not enough to say every person needs to have the surgery. I have had this for seven years, I have two neurolgists and neither of them thinks it's for me. If you are wondering if you should have it just ask your doctor and get his opinion, you can always go and get a second opinion. I have. Hope this helps.

[liddyann]

How is your daughter after the thymectomy? I, too am wondering if I should have it. I've had all the meds and the plasma pheresis and IVIG's. When I'm having severe trouble, I think I should have it. It seems the rough times are harder for me to pull out of. I'm 37 and my dr thnks it would help.