strizzlow20
New member
- Joined
- Oct 23, 2008
- Messages
- 9
- Reason
- PALS
- Country
- US
- State
- FL
- City
- Sebastian
Hello Everyone,
I believe I joined this forum many years ago because I was worried that I had ALS back in 2007. I was blown off by a lot of physicians and I finally had a neuro locally that took me serious in 2008 and did a ton of testing. I thought I had bulbar symptoms for ALS because my tounge would feel heavy, I noticed twitching, and I felt I was slurring. To summarize, I was diagnosed with Myastheni Gravis. Now I would like to explain why I'm here and back again. I was given Mestinon which is the first line of treatment for MG and I didn't take it because I didn't see results. For years I did ok, and stayed fit. I went to the Mayo clinic who initially dismissed the diagnosis because I didn't have a positive single fiber EMG. I only have positive antibodies for it. I'm not suffering from twitching in my calves, feet, hands, and arms, and they're weak. Weaker then they have ever been before. I've seen that sometimes a false positive can occur for MG if you have ALS. I would never question the diagnosis, mainly because of the length of time that I've had symptoms, but since April I've been going downhill. I'm having vision and balance issues as well and from what I understand this isn't common with ALS. Bottom line, I'm really nervous. My mom is a nurse and I'm not going to bring this up to her because I don't want to freak her out, but I'm really having a tough time. When I wake up, I don't feel refreshed. I'm having trouble with writing my name and I feel like I miss the key hole when I try to use my keys. The twitching and weakness have me worried. I'm going to bring it up to my neuro in 2 weeks. MRIs, EPs, and even the EMGs have been negative (which I have read that this would be positive). Blood work is all good with the exception of MG. It;s all crazy but I'm not the same person I was. I'm just concerned and now I'm starting to second guess the MG for the cause of all of my symptoms for all these years. I've been complaining of right foot weakness since 2010 and now my nurse practioner said she noticed a slight positive babinski sign. My reflexes to me are off as well. I seem to jerk (maybe clonus or a reflex issue) as well. If anyone has any advice, I'm open to it.
I believe I joined this forum many years ago because I was worried that I had ALS back in 2007. I was blown off by a lot of physicians and I finally had a neuro locally that took me serious in 2008 and did a ton of testing. I thought I had bulbar symptoms for ALS because my tounge would feel heavy, I noticed twitching, and I felt I was slurring. To summarize, I was diagnosed with Myastheni Gravis. Now I would like to explain why I'm here and back again. I was given Mestinon which is the first line of treatment for MG and I didn't take it because I didn't see results. For years I did ok, and stayed fit. I went to the Mayo clinic who initially dismissed the diagnosis because I didn't have a positive single fiber EMG. I only have positive antibodies for it. I'm not suffering from twitching in my calves, feet, hands, and arms, and they're weak. Weaker then they have ever been before. I've seen that sometimes a false positive can occur for MG if you have ALS. I would never question the diagnosis, mainly because of the length of time that I've had symptoms, but since April I've been going downhill. I'm having vision and balance issues as well and from what I understand this isn't common with ALS. Bottom line, I'm really nervous. My mom is a nurse and I'm not going to bring this up to her because I don't want to freak her out, but I'm really having a tough time. When I wake up, I don't feel refreshed. I'm having trouble with writing my name and I feel like I miss the key hole when I try to use my keys. The twitching and weakness have me worried. I'm going to bring it up to my neuro in 2 weeks. MRIs, EPs, and even the EMGs have been negative (which I have read that this would be positive). Blood work is all good with the exception of MG. It;s all crazy but I'm not the same person I was. I'm just concerned and now I'm starting to second guess the MG for the cause of all of my symptoms for all these years. I've been complaining of right foot weakness since 2010 and now my nurse practioner said she noticed a slight positive babinski sign. My reflexes to me are off as well. I seem to jerk (maybe clonus or a reflex issue) as well. If anyone has any advice, I'm open to it.