holdingouthope
Member
- Joined
- Oct 2, 2009
- Messages
- 23
- Reason
- Loved one DX
- Country
- US
- State
- tx
- City
- Around the way
Hi all. I've been reading over the past week or so since we learned on the 1st of a possible ALS diagnosed for my dad. We have been really blessed to have found a doctor who ran the gamut of tests to make sure he was making the proper diagnosed and we do feel confident, based on dads symptoms and the progression etc, lack of response from IVIG (thus far) and ruling out other etiology that it is in fact ALS.
A little background, he was c/o back pain in June with weakness and difficulty ambulating since July, shortness of breath started end of September with me flying out from NYC 9/27 and him being in the hospital since 9/28. Prior to this hospitalization, we had assumptions that he had some short of neurological issue going on but with socialized medicine (he's getting county insurance) they were very slow to get him appointments with clinics and he has been fighting to get an MRI since June. It wasn't until we fought to have him admitted (with the shortness of breath) that they finally did scans and an EMG and found the motor neuropathy. They said it was an axon issue, and the neurologist described it as a frontal motor neuropathy. At any rate, it's affecting his breathing which concerns me since this seems progressive. The doctor is saying that he actually caught it rather quickly as most go at least a year before a diagnosed is made.
His left leg is the worst with the left arm following. He's unable to ambulate very far without fatigue and needs a rolling walker. He has shortness of breath with carrying a conversation that is worth with activity. He had 5 days of IVIG at 30gms a dose (I believe) to rule out MMN, which another doctor thought it *might* be since there was no bulbar activity during the EMG.
So, where am I going with this. I guess I just wanted to know if anyone can relate to our symptoms/situation etc.
Also, I had some questions:
1) we asked the doctor for a prognosis as my father wants to know how long he has and the doctor couldn't give us one, but said to get his things in order.. (not very encouraging). I'm wondering if anyone can give us some guideline based on the progression and symptoms as to what we can expect/progression etc from here on out.
2) they want to discharge him rather soon, maybe tomorrow. The doctor said he would go to rehab for 4-6 weeks, but the social worker came in later and said he will only qualify for 1-2 weeks in their inpatient skilled nursing which is NOT rehab. Because he has county insurance, I feel at a loss as to what to do.
3) how can they discharge him home with his respiratory issues? Doesn't he need bipap? He's also complaining of the morning headaches and a few times the aids have reported possible morning confusion (that dad doesn't recall).
4) due to the progression, do you think it would be appropriate to ask for a TERI expedition of his SSD? The hospital said they do not assist with the forms but that an agency they have could (for a fee). is that typical? I always assumed the social worker handled these things.
5) based on his symptoms, what are some things we need to be thinking about regarding the home and equipment etc for now and the future?
Phew, I think that's it as of now. If someone can help with any or all of these questions/concerns. I would be so grateful.
-Lissa
A little background, he was c/o back pain in June with weakness and difficulty ambulating since July, shortness of breath started end of September with me flying out from NYC 9/27 and him being in the hospital since 9/28. Prior to this hospitalization, we had assumptions that he had some short of neurological issue going on but with socialized medicine (he's getting county insurance) they were very slow to get him appointments with clinics and he has been fighting to get an MRI since June. It wasn't until we fought to have him admitted (with the shortness of breath) that they finally did scans and an EMG and found the motor neuropathy. They said it was an axon issue, and the neurologist described it as a frontal motor neuropathy. At any rate, it's affecting his breathing which concerns me since this seems progressive. The doctor is saying that he actually caught it rather quickly as most go at least a year before a diagnosed is made.
His left leg is the worst with the left arm following. He's unable to ambulate very far without fatigue and needs a rolling walker. He has shortness of breath with carrying a conversation that is worth with activity. He had 5 days of IVIG at 30gms a dose (I believe) to rule out MMN, which another doctor thought it *might* be since there was no bulbar activity during the EMG.
So, where am I going with this. I guess I just wanted to know if anyone can relate to our symptoms/situation etc.
Also, I had some questions:
1) we asked the doctor for a prognosis as my father wants to know how long he has and the doctor couldn't give us one, but said to get his things in order.. (not very encouraging). I'm wondering if anyone can give us some guideline based on the progression and symptoms as to what we can expect/progression etc from here on out.
2) they want to discharge him rather soon, maybe tomorrow. The doctor said he would go to rehab for 4-6 weeks, but the social worker came in later and said he will only qualify for 1-2 weeks in their inpatient skilled nursing which is NOT rehab. Because he has county insurance, I feel at a loss as to what to do.
3) how can they discharge him home with his respiratory issues? Doesn't he need bipap? He's also complaining of the morning headaches and a few times the aids have reported possible morning confusion (that dad doesn't recall).
4) due to the progression, do you think it would be appropriate to ask for a TERI expedition of his SSD? The hospital said they do not assist with the forms but that an agency they have could (for a fee). is that typical? I always assumed the social worker handled these things.
5) based on his symptoms, what are some things we need to be thinking about regarding the home and equipment etc for now and the future?
Phew, I think that's it as of now. If someone can help with any or all of these questions/concerns. I would be so grateful.
-Lissa