minnerhead1

Continued:

I do not know how this is going to turn out for me, but just be aware that people who assert that ALS only presents as focal weakness have not done the research. 10% present with generalized weakness and 25% present with bulbar symptoms. So only 65% have an initial acute problem with a specific hand/foot, which can then be EMGed pretty reliably. The other 35% are a lot trickier to diagnose. Also, atrophy, when widespread (not focal), does not show initially as dramatic dents in the body. Muscle will initially be infiltrated with fat, so the tissue will get softer and the muscles moderately weaker over time.

Again, I have not been diagnosed, but all other realistic possibilities have been eliminated at this point.

I'm in a similar boat as you two it sounds like. I'm 41 and have had generalized weakness progressing very slowly for last 18 months. Speech slurring and saliva issues getting noticeably worse now. Same burnt tongue feeling since onset. Coordination issues with walking, typing, using mouse. Twitching throughout body. Loss of flesh in hands, face, feet and butt makes normal activities painful and exhuasting. Docs (and I have seen 5 "top" neuromuscular specialists in a very large city) are finally acknowledging ALS as a possibility, after telling me "no" continually and emphatically for the past 18 months.

I am 59 years old Steve .

Steve,
Glad you made an apmt with Wash U. I go back at the end of October there. My EMG's have been ok they say. I may try a Lyme doc but don't know how to go about that exactly. I will watch the movie. My regular neuro says I am o.k. Yeah right?! I know things are not right. My family doesn't understand it either. They try to be supportive but just think it is all psychosomatic. I know better. ALL tests have been o.k. thus far and all blood test(s) too. It's tough Steve. No, I live in Paducah, KY Steve. Keep me posted also.

Larry,

Thanks for the reply. I wasn't sure how to check on my wall as I'm new to this forum so I just now found it. What is your age Larry? Do you live in Missouri? I went ahead and mad an apt. with Wash. u. My lymes doc. says my test came back with classic lymes bacteria but nothing has helped me yet. I'm not saying I don't have it but I'm fighting everyday with it. If I was you I'd go to a Lyme doc. Watch the movie "Under our skin" and it might make you feel better about your symptoms. Hang in there Larry. Keep in touch and let me know what you do and find out and I'll keep you informed about what they find out about me.... Did your EMG come back okay?

NO, they haven't really given me any idea Steve. I can't describe the tongue feeling exactly. I also know and can feel my teeth hitting my sides, etc of my mouth. I can eat, but chewing is difficult so much of the time and I know when I am eating, does that make sense. Oh, and my tongue feels numb also, like yours. I sometimes feel like I have trouble pronouncing words also Steve, but people tell me that they haven't noticed it, like I can't always get the "word" out sometimes. That is just with my mouth/neck areas. I feel weak so much of the time also in my arms, hands, legs and feet. Uncoordinated, unsteady, off balance when I walk. I am at a loss anymore. St. Louis Wash U said NO ALS and so does my neuro locally, but something is up. I would love for all of this to be over with.

Larry

Does your tongue actually go numb with ALS? Also do anyones muscles "pulse" with ALS. Mine feel like they short out. I'm strong and can lift anything I want to but my muscles are very shaky and are getting worse. I do have cramps also. If I try to do a sit up my stomach muscles shake me to death like they are cutting out. This is over my whole body. Does ALS affect the whole body or does it start with one body part and move on?

Thank you.

Steve