NeuroTalk Support Groups - To Anzoin about your sister

Quote:

"hi... my sister has been diagnosed with MG about a year ago & we were considering various options for her. Apart from Mestinon there are a bunch of Steroids that she has been prescribed... she has been taking these medicines for a year now, she is able to conduct normal routine work but keeps falling ill atleast once in twenty days. Also she has now started getting lot of side effects - she has put on 15 kgs of weight, developing red marks all over the body, pimples on the face etc. We have started considering Thymectomy - so would like to know if it really helped you in the curing process.

Also are you also suffering from any side effects or not???? though I would sincerely hope not.

PLZ reply ASAp as her condition is worsening by the day. Thanks"

Anzoin, Welcome! I'm sorry your sister is not doing well. I made this post because I was afraid your post was getting lost in the other one.

First of all, MG is never "cured" even when someone goes into remission. I'm sorry if someone told you that a thymectomy can cure MG.

I've never had a thymectomy, so I can't say much about it. Though I've done lots of research on it. Having one when your sister is not doing well is not a good idea. She should be stronger before any surgery.

Have they tried plasmapheresis or IVIG for her? That would be the next step. How much Mestinon is she on? What dose of steroids is she on? It almost sounds like they gave her more than one kind!

They should also make sure nothing else is making her MG worse like a thyroid condition, adrenal gland problem, B12 deficiency, infection, etc. Sometimes when a person is on a steroid, an infection is not obvious.

The red streaks, etc. sounds like she is having a Cushings response to the steroids. Going off of steroids is not easy and should not be done quickly!

Does your sister have an MG expert caring for her?

Is there anything else we can help with? There are a lot of supportive and knowledgeable people her to help. Please ask as many questions as you need to.

Annie