Hataltul
New member
- Joined
- Jul 6, 2010
- Messages
- 7
- Reason
- Loved one DX
- Diagnosis
- 06/2010
- Country
- US
- State
- Oregon
- City
- Aloha
Two weeks ago my soon to be hubby was diagnosed with possible ALS. He had started noticing weakness in his right hand last November, prior to that nothing. He teaches elementary school music and by December could no longer play the guitar for his classes.
He saw an orthopedic specialist, as we thought perhaps it was a pinched nerve, however the appointment was inconclusive. In February he saw a chiropractor, thinking it was a pinched nerve. She ordered an MRI of his neck which came back ok then one of his head for a possible stroke or MS, it was ok also.
In May he saw a neurologist. Blood was drawn and an EMG test ordered. On June 21st, the day after school got out for the summer, the neurologist told him that he thought it might be ALS and referred him to the ALS center.
We had our first appointment Friday July 2. They took more blood, ran another EMG, took X-rays and a breathe test. The doctor told us that some of the tests will take 3 weeks so we have another appointment on July 30th for a definitive diagnosis.
When my sweetie asked if he should talk to his school about next year she was very open and honest and said that we might want to talk to them about early retirement. He is only 50. Since November he has lost his entire right arm. His left is being affected now; he can’t open a pop bottle or button his pants. He says his tongue feels heavy and I’ve noticed that he slurs when he talks. The doctor also said that there is nerve damage in his legs, back, jaw and neck.
We have been together 3 years and had talked about marriage but neither was in a hurry thinking we had plenty of time. Since June 21st we have decided to get married sooner rather than later. The wedding date is August 28th.
My concern is this seems to be progressing a little faster than what I have read it should. It has been less than a year and already he has lost so much. This unknown is a living hell, pardon my “English”.
I work for a Hospice agency and deal with death and dying daily, but I never expected I would have to deal with it like this. It feels like a bad nightmare.
Help!
He saw an orthopedic specialist, as we thought perhaps it was a pinched nerve, however the appointment was inconclusive. In February he saw a chiropractor, thinking it was a pinched nerve. She ordered an MRI of his neck which came back ok then one of his head for a possible stroke or MS, it was ok also.
In May he saw a neurologist. Blood was drawn and an EMG test ordered. On June 21st, the day after school got out for the summer, the neurologist told him that he thought it might be ALS and referred him to the ALS center.
We had our first appointment Friday July 2. They took more blood, ran another EMG, took X-rays and a breathe test. The doctor told us that some of the tests will take 3 weeks so we have another appointment on July 30th for a definitive diagnosis.
When my sweetie asked if he should talk to his school about next year she was very open and honest and said that we might want to talk to them about early retirement. He is only 50. Since November he has lost his entire right arm. His left is being affected now; he can’t open a pop bottle or button his pants. He says his tongue feels heavy and I’ve noticed that he slurs when he talks. The doctor also said that there is nerve damage in his legs, back, jaw and neck.
We have been together 3 years and had talked about marriage but neither was in a hurry thinking we had plenty of time. Since June 21st we have decided to get married sooner rather than later. The wedding date is August 28th.
My concern is this seems to be progressing a little faster than what I have read it should. It has been less than a year and already he has lost so much. This unknown is a living hell, pardon my “English”.
I work for a Hospice agency and deal with death and dying daily, but I never expected I would have to deal with it like this. It feels like a bad nightmare.
Help!
