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My Biopsy Results

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lhagsjr

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-scattered mild atrophic fibers
-rare hypertrophic fibers
-no evidence of "grouping" or active denervation.

Diagnosis:
-Changes are mild and are non-specific to etiology.



No idea what that means...ALS docs has released me from his services...
 

brooksea

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Didn't Jamie have a similar diagnosed on muscle biopsy?

I'll check the threads.
 

brooksea

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I'm sorry I can't find it right now. Search Jamie's posts and you might find his results, or you can PM him. I'm sure he would be willing to discuss this with you.

It sounds like good news for you! But, it doesn't explain everything either and I think Jamie is in the same boat.

What will you do now? Please keep us informed. We want to help if we can.
 

patricia1

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lhagsjr said:
-scattered mild atrophic fibers
-rare hypertrophic fibers
-no evidence of "grouping" or active denervation.

Diagnosis:
-Changes are mild and are non-specific to etiology.


No idea what that means...ALS docs has released me from his services...
Why would he release you unless he knew you wont be needing him Great news Pat
 

Jamiet

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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
 

patricia1

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My god Jamie is there no end to your suffering. Iheard that you do get worse before you get better because of the toxics in your body from the lymes. You have to hang in there We have to believe these doctors know what they are talking about. I wish you well and answers God bless Pat
 

Jamiet

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Thanks pat, this is somewhat of a nightmare, but i shouldn't be complaining, i'm not diagnosed with ALS. It could be worse.

it's just i feel soooooo badddd.

I just don't know.

take care

jamie
 

brooksea

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Jamie,

Very sorry things are getting worse for you. I truly hope if you do have Lymes that this regiment will help.

Please let us know how you are.

My husband was diagnosed right away with ALS. I can't imagine adding all the stress of not knowing what the heck is really wrong like some of you here.

Y'all hang in there!
 

ltr

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Jamie - I have been on steroids for 3 weeks. I cried reading Lou's post because, for the first time since this illness hit me, I actually have thought I would rather just die. I have been a fighter for 1 year and 11 months, fighting for a diagnosis, a treatment, any kind of help. Now I am the worse I have ever been. I'm not sure if it's the steroids or the illness, but the fasciculations (which, by the way, are not a symptom of myopathy or polymyositis) have increased 75%, the weakness is now very evident in my quads, biceps, triceps, shoulders and the worst is my jaw. I have also now added a lump in my throat, hoarseness of my voice that comes and goes daily and a horrible "cramp" in my throat. When I rest my neck, I can feel it all the way around so I am not sure if it is neck weakness or throat problems. But, we all know what bad news this is.

The National Institute of Health had accepted me for a clinical research, but the researcher decided to decline because he thinks I have something other than polymyositis. He said he is worried about the fasciculations. He didn't say why he was worried. He said I needed tests that my neuro hasn't done and he had me write a few down for my next visit. But, you know how they are, God's, and will probably be offended by it. At this point I have follow-up visits with docs who don't give a crap whatsoever, no family support and will probably end up in a nursing home soon with my youngest son ending up in a foster home. This is the thought that makes me cry daily. He has ADHD and is not the kind of kid that outsiders will swarm after. He will miss my love and his brother and sister terribly and I know his life will be hell. I don't know what to do, where to turn. Getting this half assed diagnosis hasn't helped me a bit.

Sorry to bring everyone down. I guess I am feeling sorry for myself. I wish you would all be happy that you have a spouse, adult or other parent of your children in the house. I will have to leave my home as soon as I can't take care of everyone anymore. What kind of life is that?
 

CindyM

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Leslie-honey! You are going through a bad patch right now. It will pass, I promise you. That fighter in you will come back, I am sure of it. You just need to get some rest and do something nice for yourself and try to take a short vacation from thinking about what is wrong. If I were with you tonight I'd make you a cup of tea or, better yet, a wine cooler! Cindy
 

brooksea

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Is there a "bad moon a risin'?"

This all just really stinks!

Peoples lives in limbo...especially with children involved...despair and anger...those words cannot describe all of this.

Leslie, please hang in there.
 

robc

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Jamie,

Have you talked to a naturopath re: Lyme disease? My naturopath had mentioned that they have some succcess treating Lyme disease with a natural antibiotic called Artesin. My lyme tests were negative so I didn't get the details on this, but it might be worth looking into.

Good luck to you!

-Rob
 

Jamiet

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Rob,

I'm going one at a time i guess, but it's a good suggestion. I'm just NOT sold on teh lyme disease...JUST NOT....

I have waht you have plus and the ALS clinic released me. The only thing differenent is they didn't find the hoffmans, but i was able to get the hoffmans doing it at home.

I have very very brisk reflexes, positive jaw jerk, atrophy, jaw pop, left facial wasting, tongue wasting (i see it)....and low and behold....the ALS clinic released me.

I was looking at your post, my biopsy was "essentially Normal"....it showed "rare" denervated fibers and "rare" atrophic fibers....no fiber type grouping, but to me, that's not normal.

Take care,

jamie
.
 

patricia1

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You are so right, Keep asking questions You know your body, dont let them intimitate you Like I said you may have Lymes ,but you can have something else as well.They play God with our lives. Pat
 
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