[rockenmama]

Couldn't do IVIG the first night due to reaction to Benadryl so the doctor decked that 5 days instead of 3 was the best way to proceed with it. I got transferred into rehab center on Tuesday. Today was the first day where I myself could easily see the improvement. Of course that means I get worked harder and end up feeling like toast, thankfully I'm at a good facility and the understand about me needing lots of rest and how I have to be careful about over doing it. Anyways I found out yesterday that the antibody test showed up negative. The repetitive stim nerve test was positive for MG. The Neuro at the hospital said that with the positive RSNT and with my history with certain drugs ( was ventilated for more than 8 hours due to the type of anesthesia the use that is supposed to only paralyze you for a few minutes, as well as I stopped breathing from low dose of fentanyl, and the Benadryl that it's MG however it seems my doctor wants further proof. Thankfully I've learned from reading here and other places how important it is to be your own advocate. I will be transported 1.5 hours away to see my Neuro on Monday. I'm hoping she'll order the 2 blood tests that she hadn't done yet for MG and at least get the SIng fiber test set up (she said she wants me to get better from this exasperation. My biggest worry is that she won't bother putting me on anything and the more time goes by the more likely the IVIg will wear off or whatever you call it. I do NOT want to go through this again if there is anything I can do about it.kwim? Sorry about the vent but any suggestions on how to approach possible medication if it's going to be some time before I get further testing? I'll be in rehab approximately 2 weeks. And my husband will be back traveling for work a week or two after I get home.
Thanks in advance

Rocken

[AnnieB3]

I suggest speaking to the doctor about a Mestinon trial. If you're having any trouble swallowing, the Mestinon Syrup might work out better for you.

If IVIG is helping, chances are you have MG.

They could always do a Tensilon test, but doctors don't often like to do that if you are doing poorly. It can make MG worse after it wears off.

You need to talk to someone about being home alone, too!!! Do you have a good internist?

It wouldn't hurt to ask to try the Mestinon, but it would sure hurt to not get enough care! I hope they'll listen to you.

Annie