Quote:
Originally Posted by rezmommy
Kathie Glenn,
I guess I have some words of support, I don't know how wise they are. My original symptoms started in August 2007 and I was not diagnosed until November 2008. During those 15 months I went through a lot. The worst part was feeling depressed and that I was crazy. At the time I was 35 and the doctors couldn't understand how my different symptoms fit together. Initially they thought that I may have had a stroke. I remember being in the hospital when the symptoms first appeared and the nurse leaned close to me and said, " now is the time to tell us about any illegal drug abuse". I was so weak and stunned that I had no reply.
Until you align yourself with a good neurologist you are probably going to have more questions than answers. My first neuro was not a good fit. He sent me home to wait and see if my symptoms went away. Eventually I met a neuro who perservered with many tests, clinical observations and listened to me.
I have noticed that stress is one of the things that my MG just cannot handle. If I find myself stressed, I notice the increase in weakness immediately. I have learned to back off of being supermom and having a good support system.
I too gained 40 lbs as I was on Pred for a year. I just weaned off of it on January. I am on Imuran and Mestinon and I go for IVIG once a week. I have generalized MG so my weakness affects everything. I do know that when I feel that I am getting worse that stairs are my first indication.
Do you have confidence in your dr and the direction your plan is going in? Do you have an MG specialist in your area that you could be referred to?
I know that there are many others on this site who will respond with words of wisdom for you. If you need more support you can message me. Please take care and know that you are not alone. Melanie  |
Melanie: Thanks for replying. I went to a Neurologist here in Columbia, SC in the beginning and he referred me to a neuromuscular neurologist at the Medical University of SC in Charleston. He is as far as I know an MG specialist. He has MG clincis on Mondays and Wednesdays and does procedures (i.e. SFEMG) on Tuesdays and Thursdays. I guess the part that worries me the most is not knowing whether the leg weakness and heaviness is from the extra weight and medication or if the disease is progressing from ocular to all over. It just seems that when I go to my appts he doesn't spend the time talking and explaining to me and listening. I always leave feeling like I don't have my questions answered. I want to have confidence, but am not sure that I do at this point. Is that the depression talking? I don't know. I may do some research and see who I can come up with within several hours driving time from and decide soon if I need to see someone else. Thanks for taking time to write. I value your opinion and appreciate your caring. Kathie
