too much pain. Now I will try to explain, but I don't know if I
can. I don't really understand it all myself.
So, I was supposed to return to the pain doc and have an EMG
on April 25th. Things got to be a bit too much, and I started
complaining. This led to an appointment with a new neurologist
on March 1st, an EMG on March 4th and back to the pain doc on
March 10th. It didn't do me much good. I'm in no better shape
now, and I am again waiting two months for the next pain
management appointment. I am really starting to hate the whole
medical profession.
They've been treating me for nine months for neuropathy. I
haven't been getting any better, and now we know why. The EMG
revealed no nerve damage - not even in my elbows.
Now they are saying it's muscle strain due to bad posture. This
could be true. My body is tipping forward and to the left. I
don't know when this started. I can at least trace it back to
August because when the pain in my left elbow began, I thought it
might be from leaning on that arm. My favorite reading position
was to read with the right hand and lean on my left elbow.
This might explain why my shoulders and upper back hurts, but it
doesn't give us any answers about my elbows. I pressed the pain
doc and he said, "I really don't know. This isn't my
spaciality. Ask Dr. Evans."
Dr. Evans is the ortho surgeon who sent me to the pain management
clinic in the first place. I sense some more run around... and a
whole lot of bull shit.
Once again, the pain doc sent me home with nothing. He's
changing some meds. "Be patient and come back in two months."
Then I got hit with another whammy. I'm being kicked out of PT.
Due to lack of progress, Medicare won't pay for more sessions.
My physical therapist tried to change goals to work on posture
and muscles. Medicare won't allow it. I have to be out of PT
for 60 days before I can start on new goals.
This leaves all my problems in the hands of the massage therapist
alone. Maybe this isn't such a bad idea. He said from the
start that my pain was caused by my body pulling forward. In
reference to the doctors and all that craziness, he said, "They
are chasing the wrong horse."
I'll be going back to Dr. Evan's on April 5th. I'm not expecting
much. He already turned me away several times. I think the only
reason he's seeing me again is because he has to follow up on the
surgery for one year.
I will also be "dropping off" some blood and urine for more
genetic testing. My doctor has come up with something else to
test for. It's a rare mitochondrial disease called Glutaric
Acidemia Type II. This interferes with the body's ability to
break down proteins and fats.
I did some research. GAII sounds like a perfect match in some
ways. But there are also some big gaps and symptoms that don't
fit. It's hard to tell, which is why I do the testing.
Usually I don't get excited about genetic testing. I've had
hundreds of tests come back negative already. I figure it
doesn't matter what we test for. The only important disease is
the one that comes back positive.
Still, I'm kind of rooting for this one for two reasons. First,
it is most often seen in infants, but there is a form involving
adult onset problems. that occurs in a single episode. Boy, I
love the sound of that. "Single episode." If this is what I
have, then I know the attack on my body will never happen again.
The second reason I like this diagnosis is because it is
inherited on a recessive gene. It was unlikely enough that my
parents, two carriers, would come together and have children. It
was more unlikely that I would inherit both recessive genes and
end up with the disorder. But it would be astronomically
unlikely that I also went on to marry and have a child with
someone who carries that gene. So there would be very little
chance that JD has this. Oh, yes, I am liking the sound of this
disease a whole bunch. We'll see what the tests say.....
No comments:
Post a Comment