Debby's Personal PN Story
Line
(Note: Information on the pages of this web site should not be
considered medical opinion(s).
Always consult your doctor before trying any treatment or
medication.)...
My name is Debby and I live in Jerusalem.
I have Sjogren's syndrome, which is a connective tissue disease,
(auto-immune) and has many manifestations. As in all such
auto-immune diseases, my cells don't recognize each other as
buddies - they think the other cell they contact is an enemy and
they kill it off.
In SjS the usual attacks take place in body orifices - eyes,
nose, mouth, vaginal area and result in dryness due to loss of
body fluid.
My manifestation was mainly in my mouth, which burns 24 hours a
day and is only relieved by chewing gum, which I do all day. The
gum also helps generate the saliva which in my mouth is extremely
low.
My mother had SjS, but her worst manifestation was in her eyes.
We all get it differently. I'd known I had what I called "my
mother's malady" until I got a name for it, for about 17 years
before my next manifestation arose. That was about 7 years
ago.
One day I was stretched out on the sofa and I had this feeling
that there was a ribbon woven in and out of my toes on both feet.
I looked down at my feet and they looked perfectly normal. I
examined my toes and there was no ribbon, no nothing, so I
continued reading. But this feeling never went away.
Then one day when I knew I was barefooted, I felt that I was
wearing socks, and that they were creased on the sole. Weird it
was, especially when everything looked normal.
Since I knew I had SjS, and had a manual about it, I looked into
the book for an answer to all these ridiculous feelings. Sure
enough, they described what I was feeling and called it
Peripheral Neuropathy.
For about a year, the feelings persisted but got no worse.
Foolishly, I didn't bother seeing a doctor about it, especially
since the book had said it was generally mild and there was no
cure.
However, after about a year the pain and numbness began. The toes
first, and then gradually the whole foot; shooting pains all
over, under the toe nails, into the ball of the foot, attacking
the heel. It was dreadful. My GP sent me to a Neurologist who
came up with the same diagnosis as had I, and prescribed
Tegretal, a medication for epileptics. It was great! Took the
pain completely away.....but.....a week later I developed a fever
that only went away when I stopped the Tegretal.
We tried three times, but each time after a week I got a fever.
The third time I also developed a rash. I didn't want to take
stronger medications and decided to try a Pain Clinic. After 6
sessions of having needles stuck into the cartilege of my ears,
which caused tears to run down my cheeks, and just gave me more
pain, I decided that acupuncture was not for me, so back to the
neurologist looking for relief. I cannot tell you how many things
were tried and none gave me much, if any relief.
Then one day I received a pamphlet in the mail about The
Neuropathy Association and the website. There I learned the names
of Neurontin (which wasn't in Israel at the time) and Ultram
which still isn't here. For a few years we fooled around with all
kinds of poison that didn't do a thing. Then finally Neurontin
got here, and that did make a big difference. However even with
it there was breakthrough pain too often.
On a trip to the States I got some Ultram. The combination of the
two medications was the best relief I'd had. Not 100% mind you,
perhaps 75 or 80% at times.
And then came the news about the study being done at the Center
for Pain and Neuromagnetics at Vanderbuilt University Medical
Cntr. After reading all the rave notices on The Neuropathy Asso.
website, and getting in touch personally with those who'd had it
done, I took the plunge and flew off to Franklin, TN and received
10 magna blocs; 3 on each leg and 4 down my spine.
I would say that now, still taking the Neurontin but having just
about dropped the Ultram, I can have days without pain, but
mostly I have hours without any pain - just the feeling of
numbness and sometimes pins & needles.
I know there is no cure for this awful malady, but I think I'm
getting the most relief possible. At least I now have the ability
to live somewhat normally. My gait has improved (just think about
having to walk on horribly sore, painful feet) and sometimes I
don't even think about my feet. After all these years of the most
dreadful pain, that's quite a statement to make.
I wish I could thank the person who sent me the phamphlet about
The Neuropathy Asso., but I haven't a clue as to who it was. That
person, may God bless a million times, is responsible for the
control over PN that I have today....and I don't have enough
words to thank all the people with PN who have shared their
experiences over the years. It has made a difference, and I am
most grateful.
Debby Mayer
Debby_b@netvision.net.il
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