Just been diagnosed too.
I've been reading on here for a couple of days and I haven't had the strength to even think right or type anymore. I was in the hospt for 12 days and went through 2 EMG's, with the last one being a more extensive study. I was diagnosed with MND and my husband and I have been in a fog. I believe I was having symptoms last spring (i.e., fatigue, weakness, dropping stuff, tripping, etc.). I finally started losing function of my hand and fingers. Saw my 1st neurologist and he scheduled an EMG to test me for carpel tunnel, which I didn't think was the case. Well I didn't make it to the 3 week away EMG scheduled test because I found myself so weak I couldn't hardly walk. Well long story short, 8 years ago I had lymphoma and went through a bone marrow transplant (donated my own cells) and I remembered how bad I felt then and I was feeling that same way again. I fourntately have an oncologist who still cares about me and saved my life so I called him. He said to go to ER and he'd call them and tell them to take care of me. I ended up being admitted and now....ALS! I'm scared. I can't get my Dr. to give me any idea of how long he thinks I have had this (which I know I can basically just tell him my symptoms)..I want answers. How long before this, and how long before that..and I guess everyone is so differnent. I just feel like in the past 4 weeks a lot has gone straight downhill. I have to stop for now because I can't endure the power of typing (and I've typed at least 90 wpm in my good days). What can I expect. I do have a walker but can you have some strong times and then some weak times? PT and OT coming to my house 2x wk. Can I help myself and get stronger? Maybe just other people's experiences will help me. I think I'm in denial then I think of how horrible this is and reality hits. Also, my neruo has articles to back up his belief that this could also be related to a rare cancer (that's destroying my motor nerurons) and wants me to have another bone marrow biopsy, which by the way hurts soooooo bad. He said he has evidence of some ALS patients having particular cancers and he thinks I should have the biopsy done. Well they insert a long needle in your hip and pull fluid out of your bone..............and my oncologists doesn't believe in sedating you for it. Says it's too big of a risk and the pain only lasts a few mins..haha....I REMEMBER IT TOO WELL. I lost a 12 yr old niece to lukemia a year and a half ago and she was always put out for the many biopsies she had to go through. You'd have to understand bone marrow biopsies to know what I'm referring to. So anything said will be helpful and if I can help someone else I will as well. thanks!
