Corky7
New member
- Joined
- Apr 10, 2017
- Messages
- 5
- Reason
- Loved one DX
- Diagnosis
- 04/2017
- Country
- US
- State
- MA
- City
- Attleboro
Hello,
We first notice something was wrong with my dad around Christmas when he started to loose a lot of weight. This progressed with muscle weakness in his neck. He started to have a hard time holding his head up. He finally made an appointment with his primary care doctor. At that appointment his doctor referred him to a neurologist. This took about 6 weeks for this appointed.
By the time he saw the neurologist he was having muscle weakness in his hands and it took a lot out of him just to get to the appointment. The doctor did an EMG and blood tests. The next week we would go back for results. The day we were suppose to go back for the results my dad stopped breathing. He was taken by ambulance to the hospital where they intubated him and was put in ICU.
The doctors at the hospital talked with his neurologist and determined he had CDIP (Chronic Demyelinating Inflammatory Polyneuropathy) not ALS. We were relieved! They started him on a five day treatment of IVIG. They tried taking the tubes out but this did not work and they had to do a tracheotomy. After about three weeks in ICU they sent him to a rehab. He's been in the rehab about two and a half weeks now and they are saying he's not weaning off the tracheotomy so they are thinking he has ALS.
He has an appointment with an ALS clinic on June 23rd. Also, we need to find a long term facility now and we should start thinking about end of life decisions. We should also start a conversation with my dad about wether or not he wants to stay on the trach or not. This is all so overwhelming for my family! He's not even diagnosed yet and they already want us to make these decisions.
My question is can you be at the end of your life before you get diagnosed with ALS. Everything I read says you have about 2 to 5 years after you get diagnosed. He's not paralyzed yet. He can still move his hands and legs. He can get in a chair with some help and sit for a few hours. He can talk/ whisper since he has a trache. Please help. My family and I are at our wits end!
We first notice something was wrong with my dad around Christmas when he started to loose a lot of weight. This progressed with muscle weakness in his neck. He started to have a hard time holding his head up. He finally made an appointment with his primary care doctor. At that appointment his doctor referred him to a neurologist. This took about 6 weeks for this appointed.
By the time he saw the neurologist he was having muscle weakness in his hands and it took a lot out of him just to get to the appointment. The doctor did an EMG and blood tests. The next week we would go back for results. The day we were suppose to go back for the results my dad stopped breathing. He was taken by ambulance to the hospital where they intubated him and was put in ICU.
The doctors at the hospital talked with his neurologist and determined he had CDIP (Chronic Demyelinating Inflammatory Polyneuropathy) not ALS. We were relieved! They started him on a five day treatment of IVIG. They tried taking the tubes out but this did not work and they had to do a tracheotomy. After about three weeks in ICU they sent him to a rehab. He's been in the rehab about two and a half weeks now and they are saying he's not weaning off the tracheotomy so they are thinking he has ALS.
He has an appointment with an ALS clinic on June 23rd. Also, we need to find a long term facility now and we should start thinking about end of life decisions. We should also start a conversation with my dad about wether or not he wants to stay on the trach or not. This is all so overwhelming for my family! He's not even diagnosed yet and they already want us to make these decisions.
My question is can you be at the end of your life before you get diagnosed with ALS. Everything I read says you have about 2 to 5 years after you get diagnosed. He's not paralyzed yet. He can still move his hands and legs. He can get in a chair with some help and sit for a few hours. He can talk/ whisper since he has a trache. Please help. My family and I are at our wits end!
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