Jamiet
Senior member
- Joined
- Nov 27, 2006
- Messages
- 616
- Reason
- Learn about ALS
- Country
- US
- State
- Louisiana
- City
- Carencro
Well everyone, it's been an amazing ride. I have truly made friends forever.
I guess everyone has read the results of my biopsy. I'm as confused as ever, but i have to accept what i'm being told.
I mean, before the biopsy, i was told by one of the top ALS spec. in the country that with 100% certainty it was not ALS. Then a normal biopsy, she and he said now 110%.
It doesn't answer the 5+ reflex rating, nor the muscle wasting, which they all saw on teh last appt, nor the tongue issues, feet shrinking issues, the constant cracking joints, facial palsy, assymatry, etc etc, but i have to look elsewhere.
I thought for sure that's (ALS) was what it was, but whatever i have mimics it, hence..possible lyme. I don't want to give any false hope to anyone and i am not riding the lyme badwagon until i see the LLMD next week. I spoke to his nurse, told her my story, and she went from making me wait 2 months to see him, to sched. me an appt. next week? Hope that means something.
I don't think it's fair for me to sit here and talk, it's not fair to the diagnosed people. I know how it felt when someone else was healthy, you are so happy for them, but at the same time, it makes you sad, as you want to be there.
I truly feel for everyone here, my life has been altered and the path from here on out will be to help every sick person i know. i ahve also spoken to my friend at the local ALS assn, i told her, i will not go away for what she did for me, that I will be volunteering my time and helping where i can, when i get to feeling better.
I will be checking in here from time to time, but i have to step away for now.
If ever, anyone needs something, my email address is [email protected]. I have researched the goonies out of myself and i will never change the fact, that i will give you the shirt off my back, so don't be afraid to keep in touch. I expect an email from most of you with your email addresses.
Lots of love to you all, you are all dear friends.
Rgds,
Jamie
I guess everyone has read the results of my biopsy. I'm as confused as ever, but i have to accept what i'm being told.
I mean, before the biopsy, i was told by one of the top ALS spec. in the country that with 100% certainty it was not ALS. Then a normal biopsy, she and he said now 110%.
It doesn't answer the 5+ reflex rating, nor the muscle wasting, which they all saw on teh last appt, nor the tongue issues, feet shrinking issues, the constant cracking joints, facial palsy, assymatry, etc etc, but i have to look elsewhere.
I thought for sure that's (ALS) was what it was, but whatever i have mimics it, hence..possible lyme. I don't want to give any false hope to anyone and i am not riding the lyme badwagon until i see the LLMD next week. I spoke to his nurse, told her my story, and she went from making me wait 2 months to see him, to sched. me an appt. next week? Hope that means something.
I don't think it's fair for me to sit here and talk, it's not fair to the diagnosed people. I know how it felt when someone else was healthy, you are so happy for them, but at the same time, it makes you sad, as you want to be there.
I truly feel for everyone here, my life has been altered and the path from here on out will be to help every sick person i know. i ahve also spoken to my friend at the local ALS assn, i told her, i will not go away for what she did for me, that I will be volunteering my time and helping where i can, when i get to feeling better.
I will be checking in here from time to time, but i have to step away for now.
If ever, anyone needs something, my email address is [email protected]. I have researched the goonies out of myself and i will never change the fact, that i will give you the shirt off my back, so don't be afraid to keep in touch. I expect an email from most of you with your email addresses.
Lots of love to you all, you are all dear friends.
Rgds,
Jamie