batboy4111
New member
- Joined
- Oct 28, 2011
- Messages
- 3
- Reason
- PALS
- Diagnosis
- 12/2011
- Country
- US
- State
- CA
- City
- Harbor City
I just wanted to introduce myself & wasn't sure where to start.
I am 42 yo wife & mom of 1 son that is a Freshman in college. We live in Southern California just outside of Los Angeles. I was officially diagnosed (FINALLY!) last December up at UCLA by the ever warm (HA HA HA) Dr. Graves. After being treated like a lab rat & a number by he & his staff we have since switched over to Dr. Mozaffar at UC Irvine. He is AMAZING & my husband & son love him as well.
I first starting having noticeable issues with atrophy & dexterity in my right shoulder/hand approximately 6 years ago but was also diagnosed w. restless leg syndrome, leg cramps, migraines & fibromyalgia over 10 yrs ago. All of the neurologists that I've seen within the last year agree that all of the symptoms actually point to the initial very slow progression of ALS. So 10 yrs, 4 neurologists, 2 rhumatologists, 1 audiologist, 2 orthopedic surgeons, 2 unneeded surgeries, pages among hundreds of pages of test results, & 1 amazing shrink - I have a diagnosis & I am truly grateful that is slow. Now what? All I know is I joined this site back in Jan & today is my 1st attempt at reaching out to those outside of my personal circle of friends & family.
With that said, they say I have slow progression but I'm wondering if that can change? I ask because this time last year I was still driving, walking on my own, cooking, swimming, working FT, dressing, etc... Now my balance sucks even more, I use a walker fulltime, I can't lift my arms above my waist & they both feel like lead weights, my jaw/neck are always sore, I need help eating at times, drying off after a shower, & I can't do any of the above activities on my own anymore or at all. And I just started on a bipap at night which, according to the dr., is more of a precautionary measure. My laying down FVC is 73%, sitting up 86%.
Honestly I am not complaining, I know that I'm fortunate & that there are fellow PALS that are in much worse shape than I. I'm just wondering if anyone else has had the same pattern.
Thanks for letting me spew & I look forward to meeting all of you.
I am 42 yo wife & mom of 1 son that is a Freshman in college. We live in Southern California just outside of Los Angeles. I was officially diagnosed (FINALLY!) last December up at UCLA by the ever warm (HA HA HA) Dr. Graves. After being treated like a lab rat & a number by he & his staff we have since switched over to Dr. Mozaffar at UC Irvine. He is AMAZING & my husband & son love him as well.
I first starting having noticeable issues with atrophy & dexterity in my right shoulder/hand approximately 6 years ago but was also diagnosed w. restless leg syndrome, leg cramps, migraines & fibromyalgia over 10 yrs ago. All of the neurologists that I've seen within the last year agree that all of the symptoms actually point to the initial very slow progression of ALS. So 10 yrs, 4 neurologists, 2 rhumatologists, 1 audiologist, 2 orthopedic surgeons, 2 unneeded surgeries, pages among hundreds of pages of test results, & 1 amazing shrink - I have a diagnosis & I am truly grateful that is slow. Now what? All I know is I joined this site back in Jan & today is my 1st attempt at reaching out to those outside of my personal circle of friends & family.
With that said, they say I have slow progression but I'm wondering if that can change? I ask because this time last year I was still driving, walking on my own, cooking, swimming, working FT, dressing, etc... Now my balance sucks even more, I use a walker fulltime, I can't lift my arms above my waist & they both feel like lead weights, my jaw/neck are always sore, I need help eating at times, drying off after a shower, & I can't do any of the above activities on my own anymore or at all. And I just started on a bipap at night which, according to the dr., is more of a precautionary measure. My laying down FVC is 73%, sitting up 86%.
Honestly I am not complaining, I know that I'm fortunate & that there are fellow PALS that are in much worse shape than I. I'm just wondering if anyone else has had the same pattern.
Thanks for letting me spew & I look forward to meeting all of you.