I have been really good about my diagnosis of PPMS. I was so sure I had ALS I would have bet everything I had on it.
Either way, it is what it is as they say and I will deal with whatever I have to. I have young children and I love my life so all is good no matter what and I feel this way 99.9% of the time.
BUT, I still don't believe my diagnosis. I saw the lesion on my medulla, I saw the lesion on my brain, I saw my test results for positive o-bands of 4 or more so what is the problem?
The fasciculations in my weak hand are my problem. I can't stop freaking out over them. I cannot find anyone else who has them. I read of MS'ers who have a finger or thumb spasm but this is just suttle thumps in my hand. It looks like a little heartbeat between my thumb and first finger. Sometimes they happen on the outside of my weak hand between my wrist and pinky. Very suttle but I can see them and feel them. They are creepy.
The MS doctor did not seem to pay to much attention to what I was explaining and it did not occur when I was in her office. I found nowhere in MS literature this happens frequently in the hands.
I know lots of MS patients have twitches and flutters here and there but does ANYONE have anything like this on their hand?
Just a thump here or there. sometimes five or six at a time (like a heartbeat). I am still not convinced.
I know it makes sense not to care because I have no control but the need to know just for my sanity - this is making me crazy.
My friend who is affiliated with John Hopkin's is looking through articles for me and no one at NIH in Bethesda, MD has been able to help me find articles or studies of this either.
If you can help me, I may be able to sleep tonight. Does anyone have thin happen to them in the hand specifically?
Either way, it is what it is as they say and I will deal with whatever I have to. I have young children and I love my life so all is good no matter what and I feel this way 99.9% of the time.
BUT, I still don't believe my diagnosis. I saw the lesion on my medulla, I saw the lesion on my brain, I saw my test results for positive o-bands of 4 or more so what is the problem?
The fasciculations in my weak hand are my problem. I can't stop freaking out over them. I cannot find anyone else who has them. I read of MS'ers who have a finger or thumb spasm but this is just suttle thumps in my hand. It looks like a little heartbeat between my thumb and first finger. Sometimes they happen on the outside of my weak hand between my wrist and pinky. Very suttle but I can see them and feel them. They are creepy.
The MS doctor did not seem to pay to much attention to what I was explaining and it did not occur when I was in her office. I found nowhere in MS literature this happens frequently in the hands.
I know lots of MS patients have twitches and flutters here and there but does ANYONE have anything like this on their hand?
Just a thump here or there. sometimes five or six at a time (like a heartbeat). I am still not convinced.
I know it makes sense not to care because I have no control but the need to know just for my sanity - this is making me crazy.
My friend who is affiliated with John Hopkin's is looking through articles for me and no one at NIH in Bethesda, MD has been able to help me find articles or studies of this either.
If you can help me, I may be able to sleep tonight. Does anyone have thin happen to them in the hand specifically?
Comment