Reply #53: A friend of mine, only 44 years old, has just been diagnosed [View All]

[tblue37]

with a progressive neurological disease that is not ALS, but that has some of the same symptoms. For a long time they were testing for MS and ALS.

His disease is called Spinocerebellar Ataxia Type 3 (SCA 3), or Machado-Joseph Disease. He went through many frustrating years of testing before they arrived at an accurate diagnosis. Both ALS and SCA 3 are terrible diseases, and I certainly hope you do NOT have either one. But now that he has been diagnosed, they can at least treat his symptoms and perhaps delay the progress of the disease, though they cannot cure it.

If your doctor has not tested for SCA 3, perhaps you should suggest it, just in case. As with my friend, the sooner you have a certain diagnosis, the sooner they can begin whatever course of treatment might help.

Good luck.

I hope it turns out that you have neither. What I'd like to see happen is what happened to me. For some time my doctors thought I had some terrible degenerative neurological disease, but when they finally diagnosed me accurately, all I had was pernicious anemia. Sure, that could eventually be fatal if left untreated--and it could produce an Alzheimer's like dementia before it killed me, because B12 is needed for the blood cells to carry oxygen, and my body cannot utilize ingested B12. But since it has been diagnosed, I get a monthly B12 shot, and that is all it takes to keep me functioning properly.

If you haven't been tested for B12 deficiency or SCA 3, have them run those tests, too. If your symptoms are not really those of ALS, then maybe you don't have it after all. We will all be keeping our fingers crossed for you!