cadallante87
New member
- Joined
- Sep 12, 2012
- Messages
- 3
- Reason
- Loved one DX
- Diagnosis
- 09/2012
- Country
- US
- State
- IL
- City
- Chicago
Very confusing time for us and I'm just trying to learn as much as possible. Anyhow, my mom was diagnosed last week. She has been having a hard time walking since 2008. She's been to multiple hospitals, including mayo, and they ran many test. Dr. at mayo said she's a complex case, with no definite answer beside lower motor neuron neuropathy. They had her take ivig, and stated if it worked, she most likely had an autoimmune disease. Well, it did not really improve anything.
My question is, if she had ALS wouldn't she had progressed even further already at this point? Yes, she does have a hard time walking and balancing but she still does walk and cleans the house, etc. She does get twitching in her hands but still has fair function with them. Could she just have a real slow progressing case? I worry that she may have something else, that actually has treatments available, but it being unknown to herself or doctors.
I've read there are strict protocols for diagnosing ALS. Can someone give me ideas what those are? It's kind of weird to think this serious of a disease has no definitive test. I'm not really in denial because she was diagnosed at one of the best ALS clinics. Just looking to dot my i's and cross my t's here.
My question is, if she had ALS wouldn't she had progressed even further already at this point? Yes, she does have a hard time walking and balancing but she still does walk and cleans the house, etc. She does get twitching in her hands but still has fair function with them. Could she just have a real slow progressing case? I worry that she may have something else, that actually has treatments available, but it being unknown to herself or doctors.
I've read there are strict protocols for diagnosing ALS. Can someone give me ideas what those are? It's kind of weird to think this serious of a disease has no definitive test. I'm not really in denial because she was diagnosed at one of the best ALS clinics. Just looking to dot my i's and cross my t's here.