Tuesday, March 13, 2012

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. 


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. 


Diane said...

Waiting for the results is miserable. Hope they come in quickly. Shouldn't be much longer for you.

Anonymous said...

Glad you're healing. The procedure sounds scary. 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 hope you get your results soon.

alyson said...

Hi Diane - Thanks for stopping by again! The waiting part is almost worse than the pain of the biopsy and recovery. Sheesh!

Hi Anonymous - Thanks for visiting my blog! Your question is so good, and my answer is so long, that I'm going to answer you in my blog.

Anonymous said...

Thanks for the reply to my question Alyson. I mainly have significant muscle loss and I do have weakness as well not when going up stairs but when I lift my arms over my head as you described. I also get the racing heart and out of breath thing on stairs. My doctor hadn't thought it anything really and didn't do an exam like yours did. I wonder what the rheumatologist's exam consisted of. I will ask mine about it again. Thanks for the information. You're brave for going through the procedure, it really looks painful. I hope you get your results very soon.

alyson said...

Hi Anonymous, It might be better to go straight to a neurologist who specializes in neuromuscular disease (rather than going to a rheumatologist). I wish you the best! If you're willing to share, I'd be interested to hear how things go.