NolaJen
Member
- Joined
- Oct 21, 2013
- Messages
- 13
- Reason
- Lost a loved one
- Country
- US
- State
- La
- City
- New Orleans
Hi, I hope this is an appropriate place to post this. Four years ago my dad started having drop foot and other symptoms in his body, including twitching. For a year they doctors thought it was a pinched nerve and other things. By the next year he was experiencing weakness and difficulty walking. We were referred to an excellent specialist.
They have never been able to give us a concrete diagnosis. CIDP vs some form of MND but always leaning towards CIDP.
However, over the past 4yrs, since the start I have watched my dad decline consistently. He is now complete assist, he's in a motorized scooter, we have a handicapped van. His bedroom and bathroom have been converted to handicapped accessible. He is unable to eat/dress/bathe or use the restroom without complete assistance. It's been heartbreaking.
He's had lots of IVIG, steroid and even chemo. Still progressing.
He told me today that he is starting to have difficulty breathing. They saw his primary care today and I imagine will now proceed with pulmonary function test.
Has anybody had a similar course or known someone similar? It is so frustrating to not know exactly what we're dealing with.
I've noticed him having trouble coughing and sounding more hoarse lately as well. This is the first he's admitted to breathing issues, which likely means it's been going on for some time.
They have never been able to give us a concrete diagnosis. CIDP vs some form of MND but always leaning towards CIDP.
However, over the past 4yrs, since the start I have watched my dad decline consistently. He is now complete assist, he's in a motorized scooter, we have a handicapped van. His bedroom and bathroom have been converted to handicapped accessible. He is unable to eat/dress/bathe or use the restroom without complete assistance. It's been heartbreaking.
He's had lots of IVIG, steroid and even chemo. Still progressing.
He told me today that he is starting to have difficulty breathing. They saw his primary care today and I imagine will now proceed with pulmonary function test.
Has anybody had a similar course or known someone similar? It is so frustrating to not know exactly what we're dealing with.
I've noticed him having trouble coughing and sounding more hoarse lately as well. This is the first he's admitted to breathing issues, which likely means it's been going on for some time.