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[IP] Re: For the discussion On Charcot....

Hi All,

My favorite discussion.  Well, actually the worst thing in my life.  I have
had Charcot Arthropathy for 5 almost 6 years now.  I am 27 years old and I
have had Diabetes for 16 years.

I, unfortunately, went to an awful doctor for the beginning treatment of my
Charcot and of course he diagnosed it wrong. UGH! So I had surgery for a
bone that was fractured, the talus bone, the weight bearing bone. I had such
an active lifestyle and he didn't even mention a diabetic complication. UGH!

So years have gone by now, and I have TWO deformed feet from Charcot. I am
lucky not to have Neuropathy, so they say. I have 10 percent nerve damage,
so the destruction and deformation has been very painful.

5 years ago, I went to a total of 13 doctors and every single one sent me to
another one. It was very scary and very frustrating and I had had it.  I
didn't know what was wrong with me. So I did my own research and found out I
had Charcot. I was diagnosed with Chacot Marie Tooth, fractures and a
variety of things that of course did me NO GOOD.  Then I was fortunate
enough to have Dr. John Ruch coming to Colorado to host a orthopedic
convention and he took time out to visit with me. Although, being totally
disabled my insurance wouldn't pay for me to travel to have him help me.
UGH!!  He is in Georgia and a very well known Orthopedic Doctor who cares
for Charcot patients.

So, now I have a rod going up my right leg, with my ankle removed. I have 8
screws and I have never once listened to any doctor who said I would never
walk again. They use that as a cop out. They didn't know what was wrong, so
they said sit in a wheelchair forever until someone knows. YEAH RIGHT!

My left foot started deforming soon after the right and now the metatarsal's
are crooked and going at a slant. Very painful, but life goes on. What else
can you do, right? I smile through the pain and of course do what I can to
make it nicer to live with.  I have a CROW walker now and I am getting an

Well, I am always willing to share my experience. I like to help and there
is such a lack of knowledge on it here in my state. I have been through the
ringer and I also have suffered with lack of education here. Or lack of
doctors accepting my insurance because they feel a woman my age who has
Medicaid and Medicare MUST be on welfare. When in reality I have worked
enough credits to receive full disability. So....I get frustrated with
doctors, as you can see.

So I am glad to see the doctors on this board helping and giving great
advice! Wish I had found you 5 almost 6 year ago. When my life was very

Dx 1984, pumping since 1999 MM 508
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