Sunflower,
I have been away from the forum for quite a while. The one thing that MG robs us of is our old life. I too was very active. I have accepted this one truth... whatever I was in a hurry to do will just have to wait. I wake up and feel great and do lots of things I want to do. I pay the next day with total exhaustion. I am learning to slow down and smell the roses. I take Immuran daily and have developed additional autoimmune disorders. I also worked in the medical field and have seen patients work through very difficult situations. I have great emotional strength sometimes and other times, not so strong. Enjoy each hour that allows you to do what is important to you and during those rest hours, plan something meaningful. I have learned not to waste time on the small stuff! I find it hard to believe that you could have had it for 15 years, sometimes the doctors are just not right. They are human and make mistakes. My suggestion to you is to stay calm, stress makes your symptoms worse. My diagnosis was a year of searching and testing. I actually diagnosed myself. Several specialists just simply did not connect the dots. When you find the right combination of drugs and diet, it will be tolerable. My life now is not my old life, but my new life has challenges but I found some inner strength I didn't know I had. Pray.
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Originally Posted by sunflower1116
I am a 25 yo F who works in the medical profession and was extremely active. After a miserable and frustrating, yet mild, Winter 2011 in NYC I was finally diagnosed with MG- and also told I had had it for 15 years (I have had ptosis and double vision that long).
I know many of you have difficulty reading long posts so I will try to keep myself brief. I need some advice/help.
My diagnosis via SFEMG MS was also ruled out just as a precaution- and in some magic most likely never to be repeated in the history of medicine- 3 neurologists agree I have MG. As of now I am Sero neg and MuSk neg. My Thalmus is fine.
Initally I was put on Mestonin, but it made me weaker and I was hospitalized because I could not clear the excessive secretions in my throat. Even when we played with the dosing it didn't matter.
We started IVIG and initially I thought it was the miracle all the nurses were calling it, but 4 months later I still feel like crap; I am realizing that the IVIG in the hospital worked because I was laying in a bed not doing anything, and not in my real life.
At my last visit my neuro mentioned doing plasmapheris, but we ruled that out because I am Sero neg and MuSk neg- she stated there is one more kind of type to test me for (a genetic autosomal recessive) but it would require a muscle biopsy and her hospital doesn't do them she needs to send me somewhere and isn't sure where she wants to send me. She also said treatment would be radically different because the type doesn't respond to IVIG or plasmapheris; which is why she thinks this is the type I have, but we are going to keep doing the IVIG anyway.
Does anyone have any idea what the heck she is talking about? Does anyone have and suggestions for me?
I have already cut everything out of my life except for work & IVIG. I don't even walk up the stairs in my house anymore, I use a chair lift- which is actually extremely depressing for someone who used to walk up 5 flights to her office.
When all this started I wanted to get back to the "old me." Now I just don't want to be exhausted and feel like I am dragging 50lb weights on my limbs by 10AM anymore.
Sorry I ran on for so long. I appreciate all of your suggestions.
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