Your knowledge and wisdom is needed

[rosales20]

I have had several posts before, but this is my first in while. I have had an emg and it was negative. I have a brother with ALS. I had a CPK test and the levels were elevated. For this reason, I was denied life insurance. However, that is another issue.

I just had another CPK and I know that it will be the same or more elevated. I have more twitching than ever. My hands, tongue, feet, calves, arms, legs, everywhere. I am still strong though. I have had these twitches for about 4-6 months now. I get cramps a lot. Especially on my forearm. Just from holding a book or repetitive motion. I have huge tooth indentions on my tongue. I am not sure what this is.

I am certain that I have ALS. What else could it be. I feel weak as well. Does anyone have some encouraging words? Thanks.

[CindyM]

Hi Rosales - welcome back! How is brother doing? I hear your concern. Did you guys ever get tested for the Sod1 gene? You must be a wreck! :( Keep posting and keep in touch. We will try to help in anyway we can. Cindy

[caroliney]

Hi Rosales,

I am truly sorry that you are so troubled and not feeling well. Try to keep positive and happy thoughts if you can and pray for strength to think of pleasant and positve things today. Contact friends or someone that may contribute this positive attitude, as the brain is a powerful tool with our bodies.

You are in my prayers and thoughts today, and remember we love you and are with you all the way. Keep the faith and try to be around someone that picks you up with humor, as this is good for all of us. Fight this cruel disease and remember you are never alone.

Hugs,

Caroliney

[ltr]

Rosales - Please don't jump to conclusions....I know it is hard seeing as you are watching someone you love suffer so, but high CPK's along with your other symptoms can be other problems as well. Remember, EMG's can be normal in the other illnesses too. Have you been to a rheumatologist or had a muscle biopsy? Don't give up, there are still a lot of other things this can be.

[Jamiet]

Have you thought about calling your brothers ALS doc and telling them what is going on with you? I think you need to request another evaluation and EMG. How long has it been since your last EMG?

I'm sure they would take a special interest in you.

I pray you are only imagining this, i wish we were all imagining this.

Take care and try to hang in there.

Rgds,

Jamie