Good morning everyone…I am in the process of a diagnosis and I would love to ask a question. I had a biceps muscle biopsy and it showed ‘Many patchy areas of decreased oxidative enzymes that affect both fiber types. These fibers are called moth eaten fibers.’ I show an elevated CK and CPK, and ANA. I was curious as to whether anyone else has shown this?
Thanks so much…Kay
I’m not sure about the moth eaten fibers, but my muscle biopsy showed elevated CPK and dermatomyositis .
I’ll share this discussion and see if we can get you any more answers!
my muscle bx showed inflammation but not specifically "Moth eaten" fibers, I have had an elevated cpk none stop for the better part of about 10 yrs, but my ana wasn't positive until 2009. I also have had positive emg for muscle disease. I also have a positive sjogrens antibodies, elevated eos, usually pretty high. my biopsy was my left thigh muscle.
Sounds familiar...should have your Neurologist explain the results of your biopsy. It is critical that your Neurologist is very familiar with myositis!
Thanks so much everyone for your comments. Morris…I live in Houston, not far from the worlds largest medical center and finding a really good Neurologist is, unfortunately, a difficult process. You would think it would be the opposite. I had two appointments, six years ago, with an MD doctor and I had to schedule them a year apart from one another…took 2 years. The 2nd appointment I went in and 2 hours of waiting later, the doctor cancelled. I pretty much gave up at that point.
Hi Kay...you need to get in touch with a local TMA support group that have members with myositis that can help you with finding docs etc...I could not find the web site for Houston however I found Dallas...http://www.myositisnw.org/2022.html
They may help you find a group in Houston. I use a group in New Jersey very useful info and support. Good luck with your search.
Kay i dont go to a neurologist i just have an awesome rheumy
Wendy…I would SOOOOOOO love to see your Rheumy! If I can’t get some answers, I may be making a trip.
Her name is Avis ware with Cincinnati arthritis, she’s very shy, but she’s a great dr. If your going to make the trip, do as I did, bring all lab results, emgs, muscle biospy results. She didn’t blow me off like the other Drs did, she was genuinely concerned
THANK YOU THANK YOU THANK YOU Wendy!!! ️ I am blessed in that I have this awesome husband that has always gotten and kept all of my records. I wouldn’t know how to act going to a doctor that was concerned. LOL
That’s fantastic, I’m happy you have strong support, that makes all of this disease stuff so much easier to navigate.ke me posted should you decide to go see her.
I feel blessed to have a great rheumatologist here in the UK. He has quite literally saved my life! Finding a good consultant is so important when trying to treat this disease, unfortunately there are some ‘not so good’ ones out there.