Hey, all you guys are talking about me like i been a stranger.....lol.
Hope all are ok or as best can be.
My results were similar, but mine showed "rare" denervated cells and "rare" atrophric cells and one "moth eaten cell". Everything else was normal.
They cut out of my left bipep, which was one of the first muscles that were noticablly smaller, has been thay way for a year. So, i'm puzzled here.
The last few weeks away from thsi forum have been a nightmare to say the least. I mean, the ALS spec. told me with 110% certainty now, it's not als. That's great, but what is it? She went so far as telling me im nerogicially clean...that's a pretty big assumption she made. Everybody knows what happens when we "ass u me" right?
I get the feeling, my doctor told us alog time ago that she was 100% sure, and i fell, since that, that was going to be the only answer. Ever Heard of the god complex?
I've had alot of time to digest this report, whats been gong on with me, visited the lyme doctor, etc. I'm confused as ever yall. I'm frustrated, angry and ready for this to get over.
I have to make a plan to move forward, first i will still see this lyme spec, he says its 99% lyme, but my test are negative (One positive, but it's likely a false potitive bc the WB was neg). So the lyme doc is going only off of symptoms, of which, i meet alot. I started his treatementm, 3 abx (Zithoro 1000mg, Malarone 4/500/day, diflucan, b-12 shot 2x's week, immune booster 1x /wk). They made me sick as a dog. I tried all fo ra few daysm, but had to get off the zithro. then, the malarone, made my neurogolical issues move into high gear, loosing muscle by the day, twithces badly, weakness in my left arm set in and now, it's not normal for sure, its' getting weaker.
So, i've stopped this, it was making me worse, quickly! I will visit this guy again, and demand to be put on cefitraixaione (rafimin) abx via IV, as this abx is approved in the treatment of MND. Thsi way, i cover both bases, i can fight the lyme if its' there and MND is treated by ceftiraxione. We'll see.
So, based upon my biopsy, my ALS specalist released me. I think, she realeased me too early, and was not paying attention to me when she should have. She's relying too much on reports and not actually talking tot hte pateint, asking questions, seeing where the problems are . She glanced one time at the biopsy and immediatly says ....oooh....now i'm 110% certain you don't have ALS and you are cleared neurologically now, so call me and keep me informed at your other visits.
I am home, 3 weeks from this report, i am worse off than ever, due to starting abx for lyme. They ahve sped this up, whatever it is. I am jsut not sold on the lyme thing.
I will be coming back here, becasue, i am still convinced that i have something, may not be als, but it aint' far from it.
My tongue is much worse in these weeks, the abx made my twitchign and muscle dealth go into overdrive. tongue is not straight and it's really acalloped. There is noticable weakness in my left arm now and the enture left side is smaller. feet are still shrinking / twitching.
Take care
jamie