Waiting for Biopsy Results

I hate waiting...

...and waiting...

...and waiting...

for medical test results. 

It's been three weeks since my biopsy, and I'm still waiting for results.  In once sense I feel as though time has flown by because it's already been three weeks since the surgery.  On the other hand, I feel as though it's taking forever to get back my results. 

I'm happy to report that I can use my arm 99% normally now (hooray!).  The bruising is gone, and I no longer have to keep the biopsy site covered with gauze.  I am still not sure what the surgery site really looks like because the surgical tape is still stuck to the site, but it is slowly coming off on its own.  I suspect it will come off completely in the next few days. 

This is the most invasive medical test I've had, and I feel it's one of the most important because it could give me answers.  Of course, the results may just leave me with more questions. 

I guess I'll just have to keep waiting for now. 

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UPDATE 3/13/12, 10:20 PM

A recent visitor to my blog posed some good questions.  My answer started to get so long, I decided to post my answer on my blog instead of the comments box. 

Do you mind saying what symptoms you had that led to you getting these tests? I have some muscle issues and was just wondering. Also I read with the biopsy there are two ways to do it, fresh and frozen. Do you know which you had?

I'm sorry you're having muscle issues.  Unfortunately, I don't know whether my biopsy was fresh or frozen.  I suppose I can find out at some point.  I'll try to remember to ask my doctor when I get the results. 

I have a direct answer and a more roundabout answer to your question about symptoms.  The more direct answer is that I have weakness in my arms and legs that showed up in a neurological exam, and a subsequent EMG showed abnormal muscle activity that indicated some sort of myopathy.  As a result of the weakness combined with the EMG results, the doctor decided a biopsy was necessary.  I should probably mention that all my blood work for muscle disease was normal. 

I'm thinking you might want specific examples of my symptoms...  I have some trouble going up stairs.  After the first few steps, my legs start to burn from the exertion.  By the time I get to the top of the stairs, I'm out of breath and my heart is racing as if I've just run a marathon.  I can usually make it all the way up the stairs without stopping, but it takes a lot of energy. 

Things that are not heavy for most people often feel heavy to me.  Opening the outer door of an office building or pouring a drink from a gallon jug can be a challenge.  My hands don't seem to have the strength to open jars or bottles very easily (and sometimes it's impossible for me to open things).  It is too difficult for me to hold a hair dryer over my head until my hair is dry (my arms start to burn if I try), so instead I hang upside-down to dry my hair with the dryer.  Letting my arms hang with the dryer uses less strength. 

The more roundabout answer is that I always assumed my muscle weakness was from ME/CFS, so I never even considered seeing a neurologist to be screened for neuromuscular disease.  I got to my current neurologist in a roundabout way.  I started loosing my hair several months ago, so I made an appointment with a dermatologist.  The dermatologist tested me for various things including ANA.  I ended up having a positive result, which can sometimes indicate lupus. 

This result lead me to a rheumatologist for confirmation that I did not have lupus.  The rheumatologist also did a neurological exam and noticed I had unusual weakness in my legs and asked if I had ever seen a neurologist for it.  I told him I had not.  I then searched for a neurologist that specialized in neuromuscular disease, which is how I found my current doctor.  She noticed that my arms had unusual weakness during her neurological exam, so she ordered an EMG.  My EMG was abnormal, so she decided to order a biopsy. 

Please let me know if you have any additional questions.  Good luck in finding answers to your muscle issues. 

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!

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. 

It's not Lupus, but...

Has it really been two months since my last post?  I really have no idea how time can be passing so quickly...sheesh!  Well, Merry Christmas, Happy Hanukkah, and Happy New Year!

I went back to the dermatologist to review my results with her, and she said I do not have lupus.  All my follow up tests had come back normal.  She did not have any suggestions as to why my other tests were abnormal or why I was losing my hair.  She suggested I use maximum strength Rogaine for men and come back in a few months. 

Uh, no thanks.  I will not be going back to a dermatologist who doesn't even examine my hair, skin, or nails. 

After my last experience with a specialist (i.e., when I was MISdiagnosed with epilepsy), I vowed to always seek a second opinion when it comes to more complex diseases and conditions.  I made an appointment with a rheumatologist recommend by my local Lupus Foundation chapter. 

The good doctor took a very thorough medical history and did a full exam.  He confirmed that I did not have lupus, but he noticed that I had unusual muscle weakness.  He asked if I had ever been to a neurologist for the weakness.  I told him no because I had always assumed it was Chronic Fatigue Syndrome.  He suggested the possibility of a metabolic myopathy. 

Metabolic what?

Sigh.  I often dream of what life would be like if I were normal and healthy and not scheduling medical appointments with specialist after specialist.  Wouldn't that be nice? 

Deciding to follow up on this new possibility, I ended up making an appointment with a neurologist who specializes in neuromuscular diseases (I didn't want to take any chances going to a general neurologist again).  I'll write more about my initial appointment in my next post.