John M C

I was formally given a diagnosis yesterday of Motor Neuron Disease-Progressive Muscular Atrophy. Felt a sense of relief that I at least know with what I am dealing. I know its a long haul from here.

Lisa B- How long did it take to get your diagnosis? Did/do you have pain? I have been told NMD is painless, yet I have significant pain. I would love to hear more about your experiences.

Wow, that is eye popping!

That makes good sense Jean Pierre. Yet there are those for whom pain is an issue.

Hi, Howard and thanks! I am still able to walk some and I think that is definitely part of my problem as the more “normal” I try to be the greater the pain I experience. However, in the past I could spend the evening or weekend on the couch doing nothing and my pain would improve. Now its always there and there even with and during prolonged…[Read more]

Thanks for your response, Mary. While I have read many scholarly articles that describe ALS as painless (in addition to my Dr) there is clearly a subset of individuals who do, indeed, have pain as a major symptom. And, based on your support groups it sounds like its a fair percentage.  I am not sure why ALS specialists would make such a blanket…[Read more]

Not at all. I appreciate your contribution!

Thanks, Bill. I appreciate any information I can get at this point in the process!

Thank you both for the response and info. Dagmar, I think overuse is directly related to my level of pain. Jean -Pierre, I will do some research into that area. Thanks again for the information!

Thanks Amanda

My father’s 1st cousin was diagnosed with ALS, but I have had the full battery of genetic testing and had no positive results. I am currently seeing a Neuromuscular specialist at Mayo Rochester, MN. I am not sure if they are an official ALS research facility, but I think they are in the thick of the research component of the disease…[Read more]

My most recent EMG/NCS demonstrated low amplitude lower limb compound action potentials. Lower limb motor conduction velocities mildly slowed. No conduction block. It was positive for fibrillation potentials, reduced recruitment motor unit potentials with no fasiculations. Interpretation: “There is evidence of a chronic, diffuse disorder affecting…[Read more]

Hi Mike and all-

I, too, have not yet received a diagnosis but there are many similarities in our stories. First, this is my first posting and I really feel like I really need to tell my story and get things off my chest. I have read ALS Forum for some time, but as I am not yet officially diagnosed, I had not registered. Your posting inspired me…[Read more]