DebraJean14
Member
- Joined
- Sep 24, 2014
- Messages
- 17
- Reason
- CALS
- Diagnosis
- 09/2014
- Country
- US
- State
- NY
- City
- Long Island, NY
Hello to all, My loving B/f was diagnosed last wed, with ALS. I am sick over this. He also has a fully torn rotator cuff, in one shoulder, the other shoulder has 2 tares, he has some neck issues... They just did all the blood work to rule out other things...he had a brain MRI, it was normal, he had an ssep , that was normal, but the EEG shows ALS. Due to his shoulder injuries, his hands are like "lobster claws". He was a very Built man, his arms are now shrinking...We thought it was from his shoulder injuries. The neuro said he had the "tongue symptom of als". We are awaiting to be accepted at the ALS center at Columbia. He is in alot of pain...but has been since he injured himself last august. (he never got any surgery or treatment for his shoulders) and now the neuro said he cannot have surgery to correct the fully torn rotator cuff.
For some reason, I am still hopeful it is NOT als.... Maybe I am in denial, IDK...he legs are fine and still muscular....he walking is fine...his speech is fine...he did lose 35 lbs since his injuries of last august...but I know muscle weighs more....and well I am so broken hearted that I CANNOT believe this. He is 41.... ANY ADVICE, please? ALso are there OTHER tests for ALS? I am so confused.... His reg doc thinks that the stem cell treatment may work but my BF insurance does not cover it. As i said, I am still thinking it is his shoulder injuries.... How do I grasp this and/or what other tests can PROVE to me and him that this is ALS?
For some reason, I am still hopeful it is NOT als.... Maybe I am in denial, IDK...he legs are fine and still muscular....he walking is fine...his speech is fine...he did lose 35 lbs since his injuries of last august...but I know muscle weighs more....and well I am so broken hearted that I CANNOT believe this. He is 41.... ANY ADVICE, please? ALso are there OTHER tests for ALS? I am so confused.... His reg doc thinks that the stem cell treatment may work but my BF insurance does not cover it. As i said, I am still thinking it is his shoulder injuries.... How do I grasp this and/or what other tests can PROVE to me and him that this is ALS?