Things are looking up. I made a post here a couple weeks ago about some potentially serious health issues that I've been having. Several doctors had diagnosed me as having Loug Gherig's Disease (this scared me nearly to death). The situation came to light in mid September. I've been struggling with it since then. Three different doctors, numerous blood tests, MRI's, EMG's, etc. I saw the specialist on November 23rd and got the latest set of blood tests drawn. At that point he really couldn't rule out ALS but I had another EMG test scheduled for this Wednesday the 14th.
I got a call from the doctor a couple hours ago. They are putting off the test until January 6th. This was disturbing news because I thought I was getting close to getting some answers and now it's pushed back another three weeks. But he did have some GOOD news. He informed me that they had gotten the blood work results back. Apparently it took a while because they sent if off to the Mayo Clinic which I had no idea they were doing. He told me this morning that it doesn't appear to be ALS!!!
It does however appear that I have Adult Onset Tay Sach's Disease. But he said that is 1000 times better news than ALS. It sounds like he's looking into possibly getting me into a clinical study that's being done up in Toronto. I don't know if I'd have to go up there to participate or maybe they can ship blood samples and such from here to there. It sounds like a clinical study might help cover some of the cost involved that may not be covered by my Blue Cross. I really don't know what the prognosis is or what the treatments or "recovery" may be, but I feel like I've gotten my life back! He said that in twenty years of dealing with ALS patients, I'm only the third case of Tay Sach's Disease that he's seen. He's lost touch with one of the other two but the other one is still in this area and being treated by another doctor at this time. But he's been dealing with it for twenty years! So it sounds like the Tay Sachs may be much more treatable and easier to deal with than ALS.
Thank you all for the previous well wishes after my last post. They appear to have worked! I just thought I'd give you an update.
Take care and have the very merriest Christmas and happy, healthy, and prosperous New Year to all of you!