I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007, and the diagnosis was changed to Essential Myoclonus. Then in 2010 I was diagnosed with Type II Diabetes. Finally, after a muscle biopsy, it was determined that I have Mitochondrial Myopathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

"But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Saturday, December 17, 2011

My Open Muscle Biopsy Experience

I had my muscle biopsy last Thursday after what seemed like an eternity of waiting for the appointment to finally come. It turned out to be in my deltoid muscle, not my leg, which suited me just fine, considering how difficult walking is for me already. They numbed me up with Novacaine so I couldn't feel anything, and since it was right near my shoulder I really couldn't see what the doctor was doing, either.

The doctor, whom I had found so difficult to understand when we saw him back in October, did the biopsy, and he and I chatted quite a bit during the hour plus procedure. I'm glad he was the one who did it, because it gave me a chance to develop some rapport with him and get used to his speech. I feel MUCH better about having him as my doctor at UAB now.

I told him about how much pain my neck had been giving me since the 3 hours of lying flat during all the tests in November, and he gave me a prescription for a muscle relaxer that has helped a lot. As weak as my muscles are it never occurred to me to ask for such a prescription, but I'm glad he offered it! I'm still using the cervical collar while in the car and when I'll be out of the house for extended periods of time, but my neck and back are definitely less painful at home.

I was pleased that he had been impressed with my complete medical history printout I gave him back in October.

We have had extensive experience as care givers for our parents, and we learned quickly that doctor's appointments were much more productive if I brought complete and easy to read information to each appointment.

So as soon as I was diagnosed with Parkinson's back in 2006, I started keeping a journal and also created a Word document in table form detailing all my medical history from birth to the present. Thank goodness I had copies of our life insurance application forms, or I would never have been able to resurrect all the dates of my surgeries and life events. It's very easy to update the document with any new test results, prescriptions, drug reactions, etc. So I print out a new copy each time I go to a doctor and always give them the front sheet with the most pertinent information on it. If they need a full current copy I have that for them, too.

I had done a good bit of online research about how the biopsy would be done, but somehow I didn't realize just how big a sample they would be taking out. I had an open biopsy, rather than a needle biopsy. He took a piece of muscle tissue from my upper arm about the size of the last knuckle of my little finger. I was able to keep my knees bent the whole time, so I didn't end up with as much back pain as I did last time.

Since I'm diabetic I have to wait 10 days to have the stitches removed. I was sent home with antibiotics to take, as well as pain meds. And I really was in a great deal of pain, which surprised me, too. I guess if I had realized what a big hunk of me he was going to take out I would have realized I was going to be very uncomfortable. I've been off prescription pain meds for several days now, but still use Tylenol sometimes.

I was also surprised by how little I was able to use my arm - almost nothing at first, but still difficult even now after 8 days. I've pretty much lived in sweat pants now since the biopsy, even wearing them when we go out Christmas shopping. I had no choice. The first trip out after the biopsy to get a sandwich and do a small amount of shopping I didn't stop to think and wore my elastic waist jeans, as I normally do. That was stupid, because hubby had to help me get INTO them.

Well, I had to use the restroom while we were out - and I couldn't pull my pants down one handed! I've done my share of going into the bathroom with my father-in-law, who had Alzheimer's, but this was the first time someone ever had to go in a public bathroom to help ME. Hubby helped me of course, but he understandably wasn't comfortable being in the women's restroom, even though we made sure it was empty. It really makes you appreciate businesses that provide Family Restrooms for situations such as this.

I was told not to lift anything heavier than a plate of food. I've learned to do a lot of things left handed and am gradually using my right arm more and more. Hopefully when the stitches are out and the heavy bandage is gone I will be able to quickly get full range of motion back.

As for test results - it will take 3 weeks to get that back, so we'll just enjoy Christmas and possibly New Years before we hear the results.

This is an expensive invasive test that is not performed if there is any other way to obtain a diagnosis, but I'm glad I decided to have it done. I've said it many times while my diagnoses kept changing that I can deal with the Devil I know much better than I can the Unknown.

If you've read this far it may be because you are considering having a muscle biopsy. I pray that you get definitive results that will help your medical team provide a beneficial treatment regimen for you. And we pray for that for me as well, that the Neuromuscular Specialist will be able to determine what type of Myopathy I have. We are praying that it will be one of the types for which a treatment has been developed.

May you have a Blessed Christmas!

7 comments:

Anji said...

I'm glad to read that it is done now. It's good that the time together gave you a chance to bond with your Doctor. That must help a lot.

When my eldest son was ill we kept a careful record of everything and it did make life easier as we saw different specialists. It is amazing how much you forget.

I hope that you and your family have a lovely Christmas. Let's hope that 2012 is the year that a proper treatment can be sorted out for you.

I'll be thinking of you

Dirty Butter said...

Thanks for your kind words and your friendship. I pray we both have a better 2012 than 2011!

Missy Leone said...

sometimes after a biopsy they still do not know or have answers. That happened to me. i have a website www.missyleone.com...i have a post about my muscle biopsy. take a look..:) this is so nice to know of others who may have the same.
Missy Leone

Anji said...

I suddenly thought of something. A while back we were 'chatting' about pine borers and I seem to remember that you had to have your home at the time treated against them.

Could some of your health problems be related to the chemicals used for that?

Dirty Butter said...

It's certainly possible but who knows, Anji. But that was so many years ago I don't even remember what company we used to do the fumigating. They did a complete toxic chemical screening when they initially diagnosed me with Parkinson's and there were no heavy metals in my system.

CyberCelt said...

What a horror story. However, the fact that they took an open biopsy is good. They took a needle biopsy of my liver. After all that fuss and expense, they had not removed enough tissue to determine anything. My girlfriend, who is battling end stage lung cancer had a biopsy of a tumor. After they ran the test, there was no tissue left, so they could not determine the genome.

I am so sorry for your trouble. I have been battling Hep-C since 2008, but at least I have a diagnosis if not a cure.

May 2012 be the best year for you, Rosemary. You remain in my prayers.

Dirty Butter said...

It's good to hear from you, Cyber-Celt. I didn't realize you were dealing with Hep-C, but as bad as my memory is - maybe I did know that a long time ago.

I had a liver biopsy last year during all the testing they did. That was so painful they x-rayed to be sure they hadn't nicked the lung.

I hope you have a good year, too!