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Muscle Biopsy? - Pahavit's Universe — LiveJournal

pahavit
Date: 4-6-2006 2:57 PM
Subject: Muscle Biopsy?
Security: Public
Tags:disability/medical, me/cfs
Muscle Biopsy?

My new rheumatologist is questioning one of my diagnoses and is pressuring me to get a test to rule it out.

Ten years ago at the now-defunct Fatigue Clinic at UCSF Medical Center, Dr Dan Peterson (one of the world's leading CFIDS/ME specialists) diagnosed me with mitochondrial myopathy in addition to CFIDS/ME. I recently had all my records transferred to my rheum, and after looking through them she said she couldn't find any testing in my file to show where Dr Peterson came up with that. She also said it's bad for a patient to be going around thinking they have something when they really don't. (I disagree -- it's harmful only if that patient is being treated for something they don't have, which I'm not).

She wants me to go to a neurologist friend of hers to have a muscle biopsy done. I was surprised, because I'd heard that mitochondrial myopathy is diagnosed by DNA testing; at least, the hereditary, genetic form of it is. Dr Peterson said I and a lot of his other CFIDS/ME patients have the non-hereditary form, so it won't show up in our DNA.

I suggested my rheum contact Dr Peterson directly for clarification (he's no longer here in Cali), and she flat-out refused. She actually scoffed contemptuously at the suggestion. WTF??

She was really pushing for this muscle biopsy to be done. I don't want to do it, because:

1 -- I'd heard it's a blood test, not a biopsy.

2 -- I can't afford the copayments for a consult and for any kind of surgical procedure. I went through that 2 years ago for a benign breast lump that didn't even have to be taken out, and I won't put myself through that kind of physical and financial trauma again willingly.

3 -- I don't see how I'm being hurt by having been told I have mitochondrial myopathy. It's not like I'm getting special treatment or extra discounts or anything because of it. I'm not even under treatment for it, for crying out loud!  (Dr Peterson prescribed medication for it, but I had a paradoxical reaction and was made extremely sick by it, so that was the end of that.)

4 -- I was getting a gut feeling my rheum for some reason is out to chip away at any evidence of CFIDS/ME in my records. I could be wrong but her whole tack seemed pretty suspicious to me.

5 -- She's referring me to a pal of hers, which means more income for her pal, especially if this pal finds a need to do a surgical procedure (and I'm willing to bet the rent she does).


I'm not going to agree to anything until I've had a chance to run it by my primary care doc (yes, the one who still owes me that $225 reimbursement). I don't have a follow-up with her until the end of May, so I have plenty of time to formulate a defense strategy.

With my fibromyalgia I don't want any more pain, I have enough as it is. I have enough financial burdens as well, I don't need any more. And I'm freakin' sick and tired of fighting with doctors over these kinds of things.

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