You certainly have had one heck of a time!! I do hope things start to
straigten out and you begin to feel better!!
To have faith and trust in your doctor is so very important! Please keep us
up-to-date on how you're doing!!
On my homefront, I'm *very* glad to report that my daughter, Kris, had her
last radiation treatment yesterday for Hodgkins! She is done and hopefully in
remission! It really took a toll on her and she's on IV fluids here at
home......but hope each day to see a little improvement!!
Linda
In a message dated 6/3/98 1:59:35 AM, GardnerSnD(AT)aol.com writes:
<<I want to thank everyone who has been keeping in touch with my progress.
It's
been one heck of time lately.
I went in for the Evoked Potential tests, which didn't turn out to be that
bad, but it did take two days. I went to my nureo for an appointment on
Tuesday morning to get the results and was told that they couldn't get a good
reading so I have to have them done again in their office instead of the
office across town. In the process they "lost" my records. They were able to
track down the blood tests and they all came back normal. My neuro then
scheduled me for a Spinal Tap for that afternoon. I showed up and three
different people told me that the tap "isn't a big deal" even as it was being
performed. Not to scare anyone, but it was the most pain I have ever felt in
my life. Or so I thought.
I went home on Tuesday with orders to lay down for 24 hours and begin taking
the steroid Dexamethasone for 12 days. I woke up early Wednesday morning not
able to move my neck in any direction, accompanied by the most intense,
crushing pain I have ever experienced beginning between my shoulderblades up
to the base of my skull. I called the neuro who prescribed Tylenol 3 and was
told to lay on a heating pad. Thank God my mother decided to come and stay
with me. By Thursday I was a raving lunatic. I couldn't move from side to
side, couldn't get comfortable and could not find any relief from the pain.
No follow-up from my nuero. I called the neuro and spoke to one of his
associates who prescribed a muscle relaxer (Skelaxin). I had to call my
pharmacy's phone number into the nuero's emergency number because he "has
other patients and can't wait for someone to locate the number". Still no
relief. Then I got angry! I had had enough.
I called my Primary Care Physician on Friday morning who also got very angry
that I had been in that much pain for so long without relief. He prescribed a
"full body assault" cocktail which consisted of the Dexamethasone for the
inflammation in the spinal cord, double up on the Skelaxin to loosen the
muscles to allow the Naproxin he prescribed to work into the soft tissue and
double up on the Tylenol 3 to cut the pain and knock me out so everything else
could work. His direction was to take it all, together, lay down, don't move
and let it work. Six hours later I woke up and finally had some relief!. I
called the neuro on Monday morning after keeping up the cocktail over the
weekend and told them I would be in his office that day and he WILL see me. I
still had a stiff neck, but the pain had greatly subsided.
The neuro kept me waiting for 45 minutes in the waiting room while the pain in
my neck and head began to return. By the time I actually got into his office,
I ripped him a new one. His diagnosis was an LP headache that could only be
cured by having a blood patch done at the site of the spinal tap. He said the
drugs I was taking would not work and would provide no relief, even as I was
telling him that the drugs DID provide relief. He couldn't tell he how the
"blood patch" would work or what was involved, just that it had to be done by
an Anastesiologist and couldn't be done in his office. Basically, he could
screw me up, but he couldn't fix it. He also informed me that "No, I don't
follow up with my patients. I don't have time to call them all." I, in turn,
informed him that he has one less patient now.
To make matters worse, the Evoked Potential tests "couldn't be read clearly"
and told me I would have to have them done again. Of course, this time I
"wouldn't need a referral and there will be no charge." I will have the tests
redone, but not by him, and not by his office.
The results on the spinal tap showed proteins evident that indicate
inflammation of the spinal cord (duh!) and 18 white blood cells that show the
same. He thinks it may be MS, but the MRI of my brain didn't show any scars
or lesions associated with that so he thinks his original diagnosis of
Lhermitt's Sign is the first "episode" of MS and needs to be tracked with
another MRI in a few months. He definitely thinks it's a "Myletin Disorder".
My diagnosis: The guy is not fit to be practicing medicine.
My Primary Care Physician is putting together a list of neurologists for me to
"interview" before preceeding to another one to give me some piece of mind
that I'll get the "right" doctor this time. He is also getting me information
to report this guy to the State Medical Board if I decide to go that course
and he has taken him off his referral list.
The good news is that the steroid seems to be working. The numbness is gone
from my left arm, leg, hand and palm and I am getting the feeling back in my
thumb and forefinger. I still have the electric jolts when I move my chin
towards my chest, but I can deal with that after all of this. I stopped
taking the muscle relaxer, Naproxin and Tylenol 3 and have spent last night
and all day today "coming down" from it all. No neck pain. No headache. I
still have a few days to go on the steriod and will continue with that since
it is helping. Then I'm off to a new neuro who can hopefully help with
whatever this turns out to be.
Sorry this is so long and wordy. I just needed to "dump" it all out and get
it off my chest.
Sandy
>>