My Achin' Bicep

WARNING: This entry may be too graphic for those who are sensitive to reading about medical procedures. 

Let me just say that the muscle biopsy I had on Tuesday was NOT fun. In fact, I'm adding it to my list of things I never want to do again unless I absolutely have to.

Fortunately, the doctor prescribed some Ativan that I could take before my procedure so that I did not have so much anxiety. 

The anesthesia that was injected into my skin felt like broken glass being shoved into my body. And that was just the anesthesia!

Once the anesthesia took effect, I did not feel the actual incision into my skin.  However, they could not use anesthesia on the muscle itself because it would potentially damage or contaminate the sample.  The doctor made a two-ish inch incision into the skin of my bicep and cut out a few small pieces of muscle. 

As expected, the cutting of the actual muscle hurt like crazy.  I couldn't move much because they had my arm strapped down.  At least the procedure went pretty quickly.  The doctor sewed up the incision with internal stitches that are supposed to heal with a less obvious scar. 

My arm still hurts, but mostly when I move it.  I'd keep writing, but I'm tired now.  I've taken Tylenol with Codeine.  It doesn't stop the pain, but it dulls it.  I'll write more later!

Muscle Biopsy Scheduled

Well, I've scheduled my muscle biopsy.  I was able to get an appointment for Tuesday, February 21 -- sooner than I expected.  That's next week!

I'm honestly very nervous about this procedure because they'll be cutting a chunk of muscle out of my left arm (bicep).  It's called an "open biopsy" because they actually open up the skin and muscle. 

I will be wide awake with only a local anesthetic to numb the pain of the initial incision; however, the muscle itself will not receive any pain medication.  They said numbing of the actual muscle can damage the sample.  I wonder if they'll at least give me something to relax.

The doctor said I will feel the cutting of the muscle.  I don't know about you, but that sounds horrible to me.  And painful.

Random Thoughts - Waiting for Answers

After so many false alarms with my health, especially in the last few years, I'm just not sure how to react any more to possible new diagnoses. I feel like I've been on a bunch of wild goose chases. 

A few years ago, a GI doctor suspected Celiac Disease and tested me for it.  The whole time I was waiting for the results to come back, I was mourning the potential loss of gluten and all that is good in the world. The test came out negative, indicating I did not have the disease.  (I ended up going on a gluten-free diet about two years later anyway.)

A couple years ago (has it really been THAT long?) I was misdiagnosed with epilepsy and put on anticonvulsant drugs that nearly killed me.  I spent a year believing I had epilepsy.  A second opinion from an epilepsy specialist confirmed that I did NOT have epilepsy and never had any symptoms that would indicate that I had it.  I am still emotionally scarred from this experience. 

A few months ago, I saw a dermatologist because I had been losing my hair like crazy.  She did some blood work, and my ANA came up positive.  ANA is an indicator of autoimmune diseases such as lupus.  The dermatologist suspected lupus or another connective tissues disease and referred me to another dermatologist in her practice who specialized in autoimmune diseases.

I spent weeks worrying that I had lupus until all the follow up tests came back negative.  I sought a second opinion (or would it really be a third opinion?) from a rheumatologist who specializes in autoimmune diseases. who confirmed I do not have lupus or any other autoimmune disease even though I have an elevated ANA.  It's important to note that this rheumatologist is the one who suspected myopathy and suggested I see a neurologist. 

Now I've seen a neuromuscular disease specialist (neurologist) who suspects mitochondrial myopathy.  From my very first visit with her to the EMG testing and follow up visit, she has been  consistent in her suspicions about my potential health problem, honest about the limitations of testing, and eloquent in the way she has explained things to me.  She acknowledges that my problems may be a result of my CFS, yet they may be a result of an actual myopathy. 

I like her because she comes across as extremely knowledgeable but very accessible.  She speaks to me as an intelligent human being (I've seen so many doctors who treat me like an idiot) and uses medical terminology, but explains with great patience if I need clarification or don't understand a term she has used.  She is compassionate yet professional. If only all doctors could be like her. 

Still, I'm not sure how to feel about this new path I'm headed down.  I have so many questions and concerns, but I'm trying to keep a lid on them because there is no use hypothesizing about the "what-if's" if I don't have a diagnosis.  I feel as if I need to put emotions on hold because all the previous times I've worried about a possible diagnosis, it turned out that I had merely wasted energy worrying for nothing.

It will probably be a couple of months before I get any answers.  It's likely my biopsy appointment won't be for another couple of weeks (I have to call Monday to schedule), and the doctor said it would take up to three to four weeks (or was it two to three?) for them to do a full analysis.

Oh, well.  There's really nothing I can do now but think happy thoughts, live my life, and wait.

I hate waiting!

Myopathy Suspected, Biopsy Ordered

The title pretty much sums it up. 

On Friday I had my follow-up appointment with the neurologist who specializes in neuromuscular diseases.  My blood work was normal (i.e., no abnormal muscle enzymes), but my EMG had  abnormalities.  The EMG results suggest a possible myopathy, so the doctor wants to do a muscle biopsy to look for metabolic or mitochondrial myopathy. 

Here is the EMG summary:

1. Motor and sensory conductions of the right arm and right leg were normal.
2. EMG of the right arm, right leg, and right shoulder and hip girdle muscles showed minimal short duration units in proximal muscles of the leg > arm.  No fibs or positive sharp waves were observed.  EMG of the thoracic paraspinal also showed slightly more short duration units than expected without any abnormal spontaneous activities. 

Comments: Minimal amount of short duration units in proximal muscles of the legs > arms/paraspinal.  These findings are suggestive of possible underlying myopathy.  

I haven't scheduled my biopsy yet, but I plan to call on Monday to get an appointment.  I'll be getting the biopsy on my left arm.  I'm nervous because the doctor said the procedure will be very painful and I won't be able to use my arm to lift anything (including laundry) for two weeks.  Well, at least she's honest.

Update February 12:  I thought I'd explain the results a little better.  It's my understanding that there were abnormalities in all the muscles they tested but my legs and arms were the worst, with my legs showing even more abnormalities than my arms. 

Mitochondrial Myopathy?

I saw the neurologist who specializes in neuromuscular diseases about a week and a half ago.   I was impressed that she took such an extremely thorough medical history.  She was very interested in my early health history and early manifestation of CFIDS.  She did a full exam, including basic strength tests of my arms, legs, and neck muscles where I had to push or pull against her arms.  

At the end of the exam, she said she did not think that I had metabolic myopathy, but she DID suspect mitochondrial myopathy.

Mitochondrial myopathy? 

I told her I'd always assumed my muscle weakness was from ME/CFS. She said it is entirely possible that it is CFS and not mitochondrial myopathy, but she wanted to do some tests to be sure.  She ordered a bunch of blood work and an electromyogram (EMG) and nerve conduction study. 

It's funny that she mentioned mitochondrial myopathy because I began wondering if I should get tested for mitochondrial disease since the end of 2011.  I've read that one of the symptoms of mitochondrial disease (especially in adults) is CFS-like symptoms.  Learn more about mitochondrial disease in adults. 

There are also some doctors and researchers that believe ME/CFS is a form of mitochondrial disease, or at least involves mitochondrial dysfunction. 

• Dr. Lucy Dechene: Mitochondrial Dysfunction, Post-Exertional Malaise, and CFS/ME 
• Dr. Sarah Myhill: CFS - The Central Cause: Mitochondrial Failure
• Dr. David Bell: ME/CFS as a Mitochondrial Disease
• Columbia University Clinical Trial: CFS: A Presumptive Mitochondrial Disorder

I had the EMG two days after my initial appointment with the neurologist.  Let me say that the nerve conduction study and EMG were just about the most unpleasant medical procedures I've ever had... and I've had colonoscopies, a lumbar puncture, and quite a few "annual exams." 

Getting shocked repeatedly followed by the repeated insertion of long needles into various muscles throughout my body is not my idea of a good time.  What's worse -- I had to move and contract my muscles with the needle IN me!  Ugh.  I was physically wiped out for over a week after the tests. 

I'm getting my results this Friday.  Regardless of the results, I know I will be seeking a second opinion.  As I've mentioned previously, ever since my MISdiagnosis of epilepsy, I vowed to always seek a second opinion when it comes to major conditions -- either to confirm that I do or confirm that I don't have whatever I'm supposed to have (or not have).  I recently gained some peace of mind after seeing the rheumatologist who confirmed I do not have lupus. 

I will be seeing one of the leading experts in mitochondrial disease in March.  I actually made this appointment back in November or December when I first thought I wanted to get tested.  Interestingly, I did not mention mitochondrial disease to the neurologist I'm seeing now because I wanted to get her objective opinion of what is wrong with me. 

I'll try not to wait too long after my appointment Friday before I post an update.