raggedymary said:
My mom is finally scheduled for the ALS Clinic at Cleveland Clinic. Can anyone give me an idea of your first time at an ALS Clinic? Especially if you have participated at Cleveland Clinic.
My mom is pretty much in denial of ALS and I am afraid has some unrealistic expectations. I think it might help if I could maybe tell her what to expect.
Thanks for any help
I was at the ALS Clinic at the Cleveland Clinic. They seems very professional, maybe too professional. What I mean is they don't seem to show much compassion, when you tell them how you feel. My problem is that I am not in denial of ALS, but can't seem to get anyone to diagnosed or believe that I have it. It is amazingly frustrating.
The doctor was nice, but didn't do enough tests, even after I told him I have muscle twitching (he didn't check for that), and when I showed him the atrophy in my body, he said he really didn't see it.
I think that if your Mom is in very bad shape, like she can't get out of a chair, without using her arms, or her voice is very poor, you will get good treatment at the Cleveland Clinic. I think they need to see an ALS patient that is well into major systems, before they will diagnosed her. I was there about two weeks ago. I just saw another doctor late this week, and he is not from a big hospital, but I feel he will be the doctor that finally finds out what is wrong with me. My tests will be back next week. Wish me luck.
Maybe your Mom has Myasthenia Gravis, Lambert-Eaton myasthenic syndrome, or Wilson's Disease, which would be a much better condition to have, than ALS.
Conrad