Life is full of ups and downs. Last week Monday and Tuesday were okay. But then the pains were bad on Thursday, Friday, and today.
This has been a week of a few answers and more questions. On Tuesday, the immunologist said I have Shingles. But not normal shingles, I supposedly have zoster sine herpete, or shingles without the rash. The pain is symptomatic of shingles, so it kind of makes sense. Take some anti-viral pills, wait, and it's all good. Well, I did have a very tiny rash on my arm, far away from where the pain was, that looks nothing like the photos on the web. The big concern with Shingles is being the 1 in 5 folks who end up with Postherpetic Neuralgia.
Then, I talk to my primary care doctor, Dr. Mark Zumhagen, and read the test results over the phone to him. He says, "that's not the test for shingles." A little googling later, and indeed the test was related, but not exactly the shingles test. Still, the symptoms match, so let's go with it.
Then, yesterday the neurologist calls. It is never good when the doctor calls. He agreed that the test the immunologist did was not conclusive. And the lumbar MRI showed an enlarged disc. This could also cause nerve damage to the areas where I am having pain. So now I'm wondering, is it shingles or an enlarged disc in my spine?
But he continues.
Early on, I had an EMG test. This test has two parts. First they first hook you up to two electrodes, shock you, and measure how fast electricity travels between the two electrodes. The second part, they have a needle that is hooked up to a computer, and they poke you with that needle. It makes an audible sound as well as graphs on the computer. My test showed myotonic discharge. This is kind of wierd.
So, Dr. Rezania ordered a genetic test to see if I have the gene for myotonic dystrophy. Turns out I do. There are a lot of things I want to pass on to my children -- love for God, a desire to serve, and a sense of adventure. The gene for myotonic dystrophy is not on my list. This looks pretty bad. The doctor did make it clear that this isn't conclusive that it is the cause of my pain. There will be at least another evaluation, and probably more tests.
Lucky me. Why couldn't I have just had a kidney stone? Or diverticulitis?
This has been a week of a few answers and more questions. On Tuesday, the immunologist said I have Shingles. But not normal shingles, I supposedly have zoster sine herpete, or shingles without the rash. The pain is symptomatic of shingles, so it kind of makes sense. Take some anti-viral pills, wait, and it's all good. Well, I did have a very tiny rash on my arm, far away from where the pain was, that looks nothing like the photos on the web. The big concern with Shingles is being the 1 in 5 folks who end up with Postherpetic Neuralgia.
Then, I talk to my primary care doctor, Dr. Mark Zumhagen, and read the test results over the phone to him. He says, "that's not the test for shingles." A little googling later, and indeed the test was related, but not exactly the shingles test. Still, the symptoms match, so let's go with it.
Then, yesterday the neurologist calls. It is never good when the doctor calls. He agreed that the test the immunologist did was not conclusive. And the lumbar MRI showed an enlarged disc. This could also cause nerve damage to the areas where I am having pain. So now I'm wondering, is it shingles or an enlarged disc in my spine?
But he continues.
Early on, I had an EMG test. This test has two parts. First they first hook you up to two electrodes, shock you, and measure how fast electricity travels between the two electrodes. The second part, they have a needle that is hooked up to a computer, and they poke you with that needle. It makes an audible sound as well as graphs on the computer. My test showed myotonic discharge. This is kind of wierd.
So, Dr. Rezania ordered a genetic test to see if I have the gene for myotonic dystrophy. Turns out I do. There are a lot of things I want to pass on to my children -- love for God, a desire to serve, and a sense of adventure. The gene for myotonic dystrophy is not on my list. This looks pretty bad. The doctor did make it clear that this isn't conclusive that it is the cause of my pain. There will be at least another evaluation, and probably more tests.
Lucky me. Why couldn't I have just had a kidney stone? Or diverticulitis?
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1 comment:
You can find all sorts of information and some help at our website for the Myotonic Dystrophy Foundation at:
http://www.myotonic.com/go/mdf/
You did not mention in you blog if you have DM1 or DM2, you may want to ask your doctor if he did not tell you. Good luck and please join our community.
John
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