ccjjcc
Active member
- Joined
- Jul 18, 2010
- Messages
- 88
- Reason
- Loved one DX
- Diagnosis
- 08/2010
- Country
- US
- State
- XX
- City
- where it's green
I really need some info to help my brother! It's been horrible. :-(
Main question right off the bat: do you need a referral to get into the UIC ALS clinic? He doesn't have insurance.
He started last November not being able to raise his arm higher than his shoulder. Then he fell in January and couldn't get up. That led to a diagnosis of cervical stenosis and he had surgery for it. He was not able to do the physical therapy due to being homeless and all he has done is get weaker since.
In April he was back in the hospital because he was weak and had numerous tests. They diagnosed neuropathy. He was to the point where he could not lift either arm past a certain point and can put no weight on his arms, like trying to hold a walker, because he has no strength. He was having some trouble walking. Right calf stiffness.
The hospital sent him to a nursing home, even though he is only in his late 50's. He has deteriorated since. Now, he cannot get out of bed by himself, and he cannot stand up by himself without someone standing him up. He can barely walk. He cannot sit up in bed by himself. His speech is fine. And breathing.
About 2 weeks ago he got worse - he said his right leg was turning to dead weight. He said he was weakening. (to what is described above) before that, he could at least get to the bathroom.
The nursing home was waiting for his medicaid to go thru before getting him to any other doctors. But with his worsening condition, I had them take him to the emergency room and they admitted him. He had a CAT scan and MRI which were "normal". Supposedly he has had and EMG and the NVR and they were normal.
They recommended he go to the als clinic but would not refer him because he has no insurance. Now he is back in the nursing home, waiting. I am very concerned that he will get weaker and die before they can get him into some place that can willing to diagnose him. And treat him? Maybe it isn't ALS?
I live in a different state, and this has been horrendous because it's only by cell phone that we have any contact. If he starts losing his ability to speak, I don't know what I'll do. I feel like he is falling thru the cracks and I can't stop it.
Main question right off the bat: do you need a referral to get into the UIC ALS clinic? He doesn't have insurance.
He started last November not being able to raise his arm higher than his shoulder. Then he fell in January and couldn't get up. That led to a diagnosis of cervical stenosis and he had surgery for it. He was not able to do the physical therapy due to being homeless and all he has done is get weaker since.
In April he was back in the hospital because he was weak and had numerous tests. They diagnosed neuropathy. He was to the point where he could not lift either arm past a certain point and can put no weight on his arms, like trying to hold a walker, because he has no strength. He was having some trouble walking. Right calf stiffness.
The hospital sent him to a nursing home, even though he is only in his late 50's. He has deteriorated since. Now, he cannot get out of bed by himself, and he cannot stand up by himself without someone standing him up. He can barely walk. He cannot sit up in bed by himself. His speech is fine. And breathing.
About 2 weeks ago he got worse - he said his right leg was turning to dead weight. He said he was weakening. (to what is described above) before that, he could at least get to the bathroom.
The nursing home was waiting for his medicaid to go thru before getting him to any other doctors. But with his worsening condition, I had them take him to the emergency room and they admitted him. He had a CAT scan and MRI which were "normal". Supposedly he has had and EMG and the NVR and they were normal.
They recommended he go to the als clinic but would not refer him because he has no insurance. Now he is back in the nursing home, waiting. I am very concerned that he will get weaker and die before they can get him into some place that can willing to diagnose him. And treat him? Maybe it isn't ALS?
I live in a different state, and this has been horrendous because it's only by cell phone that we have any contact. If he starts losing his ability to speak, I don't know what I'll do. I feel like he is falling thru the cracks and I can't stop it.
