Molly1940

Hi molly,
Its been quite some time. How has your symptoms been treating you? I wish I could say that mine were improving. They are definitely getting worse. Ive started to develop some awful cramps. terrible pulling sensation in the muscles in my legs. which is odd, the cramping is on the other side from where I have the muscle atrophy.
I hope that things are getting better for you!!!!

Joe

Hey Molly,

I am still in remission. I have struggled hard to get answers but really have got none. I haven't been tested for Lyme. I should ask. I know how you feel with the fear of ALS. It's literally consumed me. I can't even cope with it. I cry most nights. I know it's silly to be this open. But it's true.
How have you been feeling lately?

Have you been tested for lyme?

I am so sorry to hear about your cancer. Are you still in remission? Did you ask if possibly the chemo could have done any sort of damage that would cause these symptoms? This has caused a lot of problems for my family and although they are very supportive they don't know what else to say or do. I am living my life but the fear of ALS is just so hard. I have read several reports that say Cramp Fasic. Syndrome lead several years later to ALS. However, the doctor said it was not a precursor to ALS. So I don't know what to make of it. My immunoglobulin M was very high so I had to go to a hematologist last week. He said he doesn't think cancer but ran a bunch of tests. So waiting for that as well. My grandfather always said "when you have your health, you have everything" he was so right. I long for the days of feeling well. Are you taking anything to help with the twitching?

I am so sorry to hear that. That is just awful. I know how you feel about quitting your job. I actually have been in psychiatric care since I was given two terrible diagnoses so quickly. It completely has wrecked me. I had cancer about five years ago that was misdiagnosed for a year. It led to lots of chemo and ultimately my wife and I seperating. I have been demoted at my job. It really is awful. Quality of life is not what it should be at our age! I think that is a major struggle that many people don't understand. Besides the mental anguish, it is very real, very debilitating pain and symptoms!

I had a clinical exam done by an ALS specialist who said I do not have ALS. But he also followed up with " but check with your neuro in 6 months, as sometimes it is hard to diagnose diseases like parkinsons and ALS early on. So I know your fear of such an ominous statement. I have had stiff muscles and cramps, esp. legs for about 4 years, and also terrible fatigue and exercise intolerance or about 3 years. hang in there, and I am sure we can figure this out. Always here if you wanna talk.

Hi Molly. just wanted to touch base about your symptoms. I am very similar in my story. I am 30 years old and started to really notice twitching in my left thumb back in july. It would be worse after using my hands especially when playing music. Not a typical fasic, but a rythmic back and fourth twitch in my thumb. I shortly after noticed twitches everywhere. Arms stomach back face- but mainly much worse in my legs and feet. And much more noticeable on my left side. They drive me crazy. Mine have been like this since november as well. I was misdiagnosed with early onset parkinsons which really scared me. Then the ALS fear came. -cont. above-