glupavomomiche
Distinguished member
- Joined
- Sep 25, 2011
- Messages
- 282
- Reason
- PALS
- Diagnosis
- 09/2011
- Country
- US
- State
- Texas
- City
- Podunk
Wow, I joined this site ages ago but the powers that be would never fully authorize my account so I could ask the millions of questions I have. And suddenly today, I can post?! This is my first post (showing my Captain Obvious badge here). So, hello!
I'm 32 years of age and all this mess started back in February 2010 (and I was a typical macho American and didn't see a doctor until that December). Even though I was officially diagnosed in September (and again last week for my own peace of mind as well as that of BCBS), I've been hearing the ugly letters since June. So... I have not actually been to an ALS clinic appointment at this time.
What I want to know is... are there any pALS that have NOT gone to clinics at all?
The clinic about a 4 hour drive from where I live, and it's a pain to get someone to take me (can't drive that far by myself... too gimpy already). Did I mention I HATE travelling? I have an EXCELLENT neurologist in this town who is fresh out of four years working in the ALS Clinic at Emory (he's a big time hot shot doc, not your local yokel headache, stroke, and dementia guy... he came here to join his parents' neurology practice like a good son). I trust his judgement and he's very proactive... on the Rilutek, had the spirometry and MBS, going to speech therapy already, have an orthotist and a KAFO, etc. Yes, he would like for me to go to an ALS Clinic, so I'm trying to feel out if not going something I can try to push for or not. I'm extremely curious to hear your thoughts and experiences in this department, regardless of your country of residence, age, and point of progression.
Thank you and looking forward to you all getting to know me Oh yeah, and getting to know you too!
~ Sarah
I'm 32 years of age and all this mess started back in February 2010 (and I was a typical macho American and didn't see a doctor until that December). Even though I was officially diagnosed in September (and again last week for my own peace of mind as well as that of BCBS), I've been hearing the ugly letters since June. So... I have not actually been to an ALS clinic appointment at this time.
What I want to know is... are there any pALS that have NOT gone to clinics at all?
The clinic about a 4 hour drive from where I live, and it's a pain to get someone to take me (can't drive that far by myself... too gimpy already). Did I mention I HATE travelling? I have an EXCELLENT neurologist in this town who is fresh out of four years working in the ALS Clinic at Emory (he's a big time hot shot doc, not your local yokel headache, stroke, and dementia guy... he came here to join his parents' neurology practice like a good son). I trust his judgement and he's very proactive... on the Rilutek, had the spirometry and MBS, going to speech therapy already, have an orthotist and a KAFO, etc. Yes, he would like for me to go to an ALS Clinic, so I'm trying to feel out if not going something I can try to push for or not. I'm extremely curious to hear your thoughts and experiences in this department, regardless of your country of residence, age, and point of progression.
Thank you and looking forward to you all getting to know me Oh yeah, and getting to know you too!
~ Sarah