Tag Archives: Myopathy

My Open Muscle Biopsy Experience

Day by Day with a Movement Disorder Posted on by 7

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!

Trying to Get Comfortable

Day by Day with a Movement Disorder Posted on by 2

I’m still having a lot of trouble with my weak neck muscles. I’ve read that the human head weighs 10 pounds, and I believe it! So we bought a new soft neck wrap-around brace that’s fairly comfortable, because there is an adjustment under the chin to make it smaller there. That keeps me from feeling like I’m choking, at least. My Neuro cautioned me not to use it too much, though, because it would just make my neck muscles that much weaker if I did.

So I’m mostly using it in the car and at church. I need it at church, because I don’t get any support from the chair in Sunday School. We’re meeting in our Fellowship Hall for the next few months while our sanctuary is being renovated, so they were kind enough to move a high back upholstered chair from the vestibule downstairs for me. That did help this last Sunday, but I’m still awfully sore by the afternoon. Sitting up to eat wears me out by the end of the meal.

At home I have a Tempurpedic type U shaped cushion I use on the sofa that gives me some support without doing all the work for me, and it helps a lot. We still try to get out of the house a couple of days during the week so I can walk for a while. I’m extremely slow, usually holding onto a shopping cart for help, but at least I’m getting some exercise that way.

My muscle biopsy is supposed to be Dec. 8, but I still haven’t received the official paperwork about it in the mail. So I’m just in a waiting game for now.

I continue to run Google searches occasionally, trying to find out more about the various types of Myopathy. I was very interested to find out there IS something called Steroid Myopathy! I’ve been telling every doctor I’ve seen that all this weakness started when I was pumped full of steroids after I developed Angioedema from a drug reaction. Who knows… I may turn out to be right!

I’ve also found that there are all kinds of Movement Disorder problems caused or aggravated by Statin drugs. Since Lipitor became more easily available today, and Statins are cholesterol lowering drugs, this is worrisome to me. I stopped taking my cholesterol meds when my liver enzymes went crazy, but there are an awful lot of people who take these drugs. We hear all these side effect warnings so much that I think most people’s brains just glaze over and ignore the warnings.

We had a wonderful Thanksgiving, and I do have a lot to be thankful for. Even though they drive me crazy with their slowness, I’m extremely thankful that we live close to a world renowned teaching hospital at UAB, so I can see their Super Specialists when I need them. And I’m very thankful I have a good Neurologist and a General Practitioner who take the time to listen to me and seem genuinely concerned about helping me get better.

I’m thankful for a supportive family who put up with me, as I know I’m not very easy to live with. It seems like everything frustrates me nowadays. So I’m irritable and easily upset. My poor hubby earns another star in his crown every day!