Debbie, I am glad you get to see a specialist before things get out of hand. Alot of the questions I had were about treatments. It took several months to get into a specialist and I had a primary care who didnt understand mg. Plus I lived in a small town that didnt do the good treatments such as plasmapheresis and ivig has helped many. It was important for me to stick with the treatments that worked for me and when I had a specialist to have him know what treatments worked and what didnt. Plasmapheresis worked well with me and when my mg would get out of control thats what i would have and it was a quick temporary fix. It is very good that your husband is going with you and to hear all the information that the doctors tell you. Family support is very important. My poor sister took care of me before i had a specialist and it was terrifying for her because not only did i not know how to take care of myself but she didnt either. Your husband understanding your disease is gonna help you both. Good luck at your appointment and I hope to hear more from you on how you are doing and how your appointments go. These support groups are amazing because it lets you see that you are never alone.

Debbie,
I think once you are assured of a diagnosis, the main questions are treatment ones, not just what is available and the doctor wants to do, but what are the potential risks versus the potential benefits. You need to know how you can get in touch with him/her between appointments: email? what kind of coverage when not there, etc.? Also he needs to tell you what you should be doing to maximize your treatment and minimize the problems. Of course you know a lot of that.There are things we do that don't optimize our treatment, because those things are important to us. But there are things we can do like diet modifications, medications to settle our tummies, and not do that are not really worth the risk (you know a lot about what those are!). Love, b.

Is it neuro musclular or pulm specialist?

I don't know what you went through with the I can't breath but my husband and I have a plan for if it happens to me again. Crazy as it sounds but we do have a plan.
The only question I asked(out of ordinary) was.do you ever see me going off my cellcept?
Have a good visit.
Ann

I had both. A neuromuscular specialist and a pulmonary specialist.

This is the neuromuscular specialist. I saw the pulmonary on Halloween. He would like to do a sleep study, which my husband wants me to do, but I wanted to wait to see the neuromuscular. She has a focus on MG patients, according to her bio.

I am still learning. I didn't know there was a lab test for Lambert Eaton (Sp?) Been a bit worried of that since the lung nodule.

Sorry I couldn't remeber that for some reason.
How to reach them if needed is very important, and as Ann said emergency plan with the breathing. Also I try to work with mine to make goals we have for me to reach by next visit, progress wise. Even though I haven't met them yet, it helps me know when to call him to change things before next appointmnet and stay focused on one or two things at a time also to feel we are really working to get me back to me again. May sound silly but it helps me a lot and keeps us slose in touch all the time.

Ask her,as much as you can:)

Im glad you are going to see the specialist!
Let us know how it goes.

Hugs

Jeannie

Keep a notepad near by for the next 2 weeks. If you think of something or if something strange happens you can make a note. Then be sure to take your notepad with you.

Kimber

I hope that you will be given the amount of time you need to sort out your thoughts. You can have all your ducks in a row, and then when the time comes forget something. Writing down your thoughts and concerns is a very good idea. I am not sure all of what you've absorbed, but I do know that I want you to feel better. We all want you to feel better, get better, and hopefully that day is coming soon.

Please keep us posted as to how you are doing and what is going on.

TJ