Muscle Biopsy results

[Tinker]

sort of.....They said it would take 3 wks for results.  It's now been 4 wks.  So, I called the neuro and they wouldn't tell me anything at first.  Said the doc wants to view the actual slides and it would be 2 more weeks.

I asked for the PA to call me.  She did and revealed a little info:   I have lots of inflammation, type II muscle fibers are ragged.  Atrophy, inflammation, indicative of an autoimmune disease.  EMG showed absence of some nerve responses of unknown origin.

I'm thinking I have myositis or polymyositis or worse. ?? If anyone has any experience with this, please tell me what you know about ragged type II muscle fibers with inflammation.

Can you believe I'm waiting two more weeks?  I'm glad it's nothing life threatening!   Tinker

[pudmott]

That is so wrong that they are making you wait another two weeks when your results show that there is something going on.

As you say glad its not lfe threatening.....and you're not clinging to your last breath for info that will save your life.

Here's to a speedy two weeks for you honey

Pud

[Patze]

Hi Tinker,

Boy, ain't that the worst?  Wow, they're going to make you wait another 2 weeks?  What's wrong with this picture?

Hang in there, and I sure hope that you'll get an answer soon! 


Patze

[Linda196]

They may not be making you wait simply for the effect of waiting...muscle biopsies are extremely complicated to read, and "lots of inflammation, type II muscle fibers are ragged.  Atrophy, inflammation, indicative of an autoimmune disease" is just a very preliminary result.

After that part has been verified, they have to determine the source of inflammation (inside the muscle cells, from DNA, or an external source), the type of inflammation (which of about 8 different types of white cells is infiltrating, cause each cell type responds to a different trigger), whether it's an acute or chronic process, and some other stuff I can't understand, let alone try to explain. I do remember reading that "ragged fibers' can result from something as innocent as exercise, or any number of pathologies, so a preliminary result is not the basket to put all your eggs in...wait for the final detailed result, and if it is a form of myositis, it can be treated, in fact I went years with no treatment other than occasional NSAIDS (my choice) with no lasting ill effects.

[Sandra]

I've never heard of this, muscle biopsy. My muscles hurt all the time and my SED Rate is always high. I've been scoped and prodded, and xrayed and CT'ed but everything is always "normal" but I still hurt the sed rate stays hight and am so fatigued.
I knew of muscle pain but didn't realize it could be something.....is the muscle pain something that needs to be treated? Will it progress if it isn't? Thanks Sandra

[Pooh]

Hi Tinker,
I don't know anything about muscles biopsies but I think patience would be your best bet here.  It sounds like your doctor wants to be completely thorough and leave nothing out.  

I'm sure your doctor will tell you the results as soon as he/she is satisfied.  Good luck and please let us know when you hear.

Pooh

[Tinker]

They may not be making you wait simply for the effect of waiting...muscle biopsies are extremely complicated to read, and "lots of inflammation, type II muscle fibers are ragged.  Atrophy, inflammation, indicative of an autoimmune disease" is just a very preliminary result.

After that part has been verified, they have to determine the source of inflammation (inside the muscle cells, from DNA, or an external source), the type of inflammation (which of about 8 different types of white cells is infiltrating, cause each cell type responds to a different trigger), whether it's an acute or chronic process, and some other stuff I can't understand, let alone try to explain. I do remember reading that "ragged fibers' can result from something as innocent as exercise, or any number of pathologies, so a preliminary result is not the basket to put all your eggs in...wait for the final detailed result, and if it is a form of myositis, it can be treated, in fact I went years with no treatment other than occasional NSAIDS (my choice) with no lasting ill effects.

Hi Linda,
Thanks for the info about the muscle biopsy.  I've googled it but have found very little on the actual topic. 

I may have mistated my results.  The final results from Texas Health Sciences Center are in with all pictures.  However, the neuro said that she wants to examine the slides herself. 

They DO have the final results. Most neuros don't want to see the slides, but she does.  I'm grateful that she does want to look and give me the most accurate diagnosis.

I'm glad to know the additional info you knew about the muscle biopsy.  Thanks so much!!

[Tinker]

I've never heard of this, muscle biopsy. My muscles hurt all the time and my SED Rate is always high. I've been scoped and prodded, and xrayed and CT'ed but everything is always "normal" but I still hurt the sed rate stays hight and am so fatigued.
I knew of muscle pain but didn't realize it could be something.....is the muscle pain something that needs to be treated? Will it progress if it isn't? Thanks Sandra

Sandra,
Sounds like you've already had a lot of tests.  But have they checked your SS-A and SS-B?  My positive SS-A was positive for Sjogren's.  I KNEW something else was wrong but all I ever got was you have Fibromyalgia and Hashimoto's.  DUH!! 
The difference for me finallly finding out what was wrong was seeing a neurologist who ran lots of tests.  21 vials of blood for starters. 

I don't know if your muscle condition can get worse cause I don't know your diagnosis.  BUT YOU KNOW something is wrong.  If your rheummie is a dud, get another one!!  Don't give up.  Sending you comfort and healting vibes.         Tinker

[Tinker]

Sandra, google "myositis" and "polymyositis."  That gave me tons of info.  Good luck.  Tinker

[Sandra]

Thanks Tinker i'll do some more studying one of these days i might be able to pass the exams and get my own phd.
Question do you suffer pain and stuffness only (don't mean to minimize) or do you have trouble with organs not functioning right? i keep telling my dr's that when i hurt like this it's like my GI tract just stops. Can't eat and feel full all the time. So far they have only found a mis-positioned diaphragm. And do you get muscle cramping. I mean big time like when your hands just curl under and stay that way or your feet or other muscles, often my cramping stays for an entire night off and on, it is very painful and fatiging. Thanks Sandra

[Tinker]

Sandra, yes, I feel like I could earn another degree, also.  I have major fatigue, some days my thigh muscles hurt so badly that I can't stand it, shoulders are very tense and painful. 

You asked about the GI tract.  Bloating, bloating!!  I had a colonoscopy in April and had a terrible time.  After it was over, I had paralytic ileus for about 24 hrs.  Couldn't eat solid food for a week.  It was AWFUL!  As time went on, I recovered but still get bloated.  The doc said he thought I had IBS.

No cramping for me yet.  That sounds very painful. 

If you feel full all the time I wonder if you have dysautonomia.  I had this after chemo and just felt full all the time.  Lost 46 lbs. and it finally got better after I took Remaron for 2 wks.  I had no peristalsis....food just stayed in my stomach for 2 or 3 days.  No wonder I couldn't eat. 

Hope you get to the bottom of this.          Tinker

[irish]

When the stomach doesn't empty this is called gastroparesis and is common in people who have diseases that can have neuropathy of the gastrointestinal tract.

Also tinker, I think it was very unprofessional of the doctors staff to tell you any of the information on your biopsy. They don't know what what it is they are telling you and to unload that amount of medical jargon can really upset people.Also, usually patients head for the computer and start googling on what they have been told. This is a surefire way to drive a patient crazy.

I have learned to just cool my jets and wait for reports. If it gets to be too long I call and if they say wait some more I do. These muscle biopsies are extremely complicated as Linda said. We can read all the information on line about all these diseases and think we have every single one of them. This autoimmune stuff really is complicated as so many of the symptoms cross over from one disease to another.

EVen being a nurse and knowing a lot of the stuff I find that it is just down right dangerous to google constantly. The good thing is we usually aren't on death's doorstep, we are just darned sick and tired of not being diagnosed. Hopefully, you won't have to wait much longer and the biopsy tells them enough to give you a diagnosis.

Also, having muscle pain does not mean that we have polymyositis. I am just saying this to encourage some of you. Remember that muscle aches go along with Sjogrens. I have had some really miserable arm and thigh pain and spasms that are not poly----. I had a muscle biopsy to rule it out and the biopsy was negative. Good luck Irish

[Tinker]

Well, Irish, you are right. It can be dangerous to google a lot.  My doc knows I am an R.N., and have been very patient.  It , it was the Physician's Asst. who told me parts of the report. I told her that I realized that this is Not a definitive diagnosis.  I just wanted to know if she could read it to me.  And bless her heart, she did read part of it.  And was cautious about giving out anymore info.  I told her I would be content to wait for the next 2 wks and what she told me was very comforting.  I know it doesn't sound like good news, but you know how it is.....when you finally have a lead to the mystery you are happy even if it is or possibly may be bad.

While I agree that googling can certainly lead patients down the wrong road for info, I go to sites that are reliable and from Mayo Clinic, Cleveland Clinic, etc. 

She really didn't divulge anything I didn't already know except for the "ragged" muscles. Thanks for all your help!