NeuroTalk Support Groups - My mom was dignosed yesterday

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Find Another Neuro!!!!!!!!!!

If I were you, I'd find another neuro - MG comes in waves.........Even I peak/ebb during the day and I'm on 60 mg. a day of Prednisone and 420 mg. of Mestinon. I was the same way before I suffered my crisis -granted it took a while to get there, but you don't want your mom to get really sick before she gets the medical attention she needs. If she's really tired, then she may need Mestinon - I know for me it worked for a while. Now, my neuro is very AGGRESSIVE, but in my case it was needed, cuz' this disease almost took my life, so when I hear of a doctor being laid back with someone's health it really angers me. If her blood work and doctor both confirmed MG, then she needs to be treated for MG - if she had diabetes or MS, then she would be getting the treatment she needs, but for some reason the medical community doesn't really seem to know much about this disease or how to treat it. Hang in there!!!!!!!

Quote:

Originally Posted by SandyC (Post 326015)

My mom was told by her neuro that she does have mg. She isn't showing symptoms right now compared to her previous appointment. The blood work did confirm the diagnosis.

Her neuro has decided that if she isn't showing symptoms he's not going to treat her with the meds for mg. Her only possible symptoms right now are extreme tiredness after being out for a little while and eye twitching/blurriness. However, the blurriness seems to have lessoned since her last appointment.

It's hard to know what is what because in February she had brain surgery to remove a tumor that was benign. It was a calcium tumor and they got it out. The hard part is figuring out what symptom is from the surgery and what is from the mg.

For now, it's a wait and see game. Does anyone else have mg but not being treated?

Redtail, Gumby, and Erinhermes,

Thank you so much for the info! The main reason for not treating mom right now is the inability to really know what is a MG symptom and what is a symptom from her brain surgery. We didn't even know she had MG until after the surgery. Heck, we didn't even know she had a tumor until she ended up in my sisters driveway sleeping.

The neuro she has is one of the best in her area. I pray she doesn't have a "crisis" like I have read. She was strictly told by her neuro that any symptom that worsens or is new, she is to call him immediately. She is also on hormone meds for breast cancer. There are so many variables to consider that he doesn't want to rock the boat just yet. He is watching her closely and feels her prior MG symptoms improved from her last appointment.

With all my mom has gone through it's amazing she is still here. She has been through bypass surgery, breast cancer, broken bones from Osteoporosis, brain tumor and now this all in about 15 years. And she is only 64 years old. *sigh*

Thanks again and I will bring up to my mom to ask again the reasoning behind not treating before something happens. But from what I can understand, 600 miles away from her, is the neuro is concerned about all the meds she takes and how they may be affecting her symptoms right now.

:hug: to all of you going through this thing called MG.