Re: I am that patient you love to hate and I need help!!!

On Aug 6, 8:34 pm, christinasbooksh...@xxxxxxxxx wrote:
I am a walking (though that could change any moment) medical
nightmare. I have not seen a dentist in over 10 years because first I
was a poor college student and couldn't afford anything. Then my
medical problems mushroomed and I have been paying out the wazzoo for
medical bills, and I am in a doctor's office a minimum of twice a
month. I can't get health insurance because of pre-existing conditions
(haven't actually looked for dental insurance), and my husband refuses
to get a job with benefits (he is a IT contractor who makes a lot of
money, and he would just rather get all that money and take the risk
that I won't have any more major problems than I already do.) Plus we
make way, way too much money to get Medicaid, and high risk pool
insurance ****SUUUCKS!**** (At least in my state) I am not disabled
enough to get disability. (And no, I am not going to paper-divorce my
husband and then file for welfare, but you can guarantee I have
thought a lot about it!!!) Plus my parents almost completely neglected
my healthcare from age 0 to 18 because they thought it was ok to do so
and they were too proud for charity. (I think I saw a doctor 4 times
from age 2 to 15, and probably saw an MD fewer than 4 times between 0
and 2, and then I got yearly 5-minute athletic physicals in HS, plus
saw a crappy dentist about 10 times because he was the absolute
cheapest. So I know you already think I am an awful patient. (My PCP
likes me, but most other doctors when I first see them want to run
away because I have a stack of journal articles 7 inches thick. And
then they talk to me and get the impression that I know more about my
genetic condition than they do and I know more about how my body works
than they do. (And it's true...since diagnosis I have only talked to 1
doctor who knew more about EDS than me and she is the world's leading
expert, along with her former research partner who left research
because she felt so awful about how crappily we are treated by
doctors. I have read more journal articles about my condition than 99%
of all MDs, though I don't know about DDSs.) Anyway, my intention is a
meeting of the minds--I know all of the established medical facts on
my condition (what few there are) plus enough anecdotal evidence to
make your head spin, but I know ***ABSOLUTELY NOTHING*** about how to
do the treatments, because I haven't studied for 8 years thinking of
nothing but the practice of medicine (well, other than how barbaric
such practice is--when are they going to get it right?)

Anyway, my current diagnoses include Ehlers-Danlos Syndrome (which is
the root cause of EVERY following problem except 1 which should be
obvious), asthma, life-threatening allergies to lots of stuff and I
know I will develop more, Lyme Disease, hypothyroidism, hypotension,
orthostatic intolerance, arthritis, endometriosis, and a few more
which I can't remember because of the Lyme Disease--it kills the
memory. I currently take narcotics (small dose of one of the most
powerful narcotics, but I require massive doses during surgery),
antibiotics, fludrocortisone (to raise BP), the pill, fluconazole
(because I take antibiotics and the expected happens), Singulair,
Claritin, plus comprehensive multivitamin, massive doses of Vitamin C
(my doctor really agrees with Linus Pauling), magnesium, CoEnzyme Q10,
and ginger PRN to alleviate nausea. Plus a bunch of PRN meds and maybe
something else I can't remember ATM.

So you can see I am a disaster, but at least not as bad as the worst
EDSers. :P

I need a few bits of suggestions/advice: what pain relief can I use or
is there none? I need to have the wisdom teeth pulled, they are
horribly impacted, fully bony, but no OS can get me before September,
and I have a monsterous cavity/food trap in the worst tooth (looks
horizontal to me) which I will be seeing a random DDS about--the first
one that said he could get me in less than a week. Like the vast
majority of EDSers, local anesthetic has limited effect (I am just
glad it has very good effect for about 5 minutes.) My MD says that
general anesthetics may only be used on me in the hospital (might make
an exception if the doctor has advanced life-saving skills and tools,
plus ability to keep BP stable despite my body's desire that it be
30/0 or similar while anesthetized). Nitrous--causes low BP plus
opioid-resistance confers partial NO2-resistance if what I read is
true, triazolam--contraindicated/or extreme caution while taking
fluconazole and BCP. What do I have left? Could laser or air abrasion
work for all routine dental work? I have a high pain tolerance--I
never once hit a nurse or doctor or even yelled or swore--when my pain
was 200 on a scale of 1 to 10 and I don't believe that I am
exaggerating one bit about that 200--think medieval torture that
causes excruciating death and multiply by two. I can just guarantee
you that I won't be darkening the door of a dentist's office very
often if I have to either put up with the pain of dental work on top
of the pain daily living or rent out a hospital surgery spot for 6+
hours (I recover extremely slowly!) every 6 months for general work
because EDSers generally have horrible teeth and gums and jaws and
TMJs. (I think my gums look great--absolutely no pain or inflammation
and they're pink, not red and the teeth other than the 1 humongous
cavity are not bad.)

Question 2 could I possibly use invisalign to straighten out the
bottom teeth (they aren't decrepit like all of those extreme
makeovers, but they are quite misaligned) or is there any other option
which doesn't involve pokey things that will shred and horribly scar
all of the soft tissue even without getting smashed in the face? I am
not self-conscious about a mouth full of metal--after all, you have to
swallow your pride just to use an electric scooter or wheelchair as a
29-year old in public, outside of the hospital--though I would rather
not wear headgear because it is hideous and nearly as barbaric as a
halo for Chiari surgery, which may also be in my future. I don't want
to saw off all my teeth nearly to the root just to get a fancy facade,
because teeth are valuable and real ones can't be replaced with real
ones, and the more intact they are, the better.

Thirdly, could you kindly recommend how I should go about finding a
wise and ethical dentist/orthodontist/endodontist who thrives on
challenges and learning new things? Or should I just visit the nearest
dental school (and I have heard horror stories of students not
catching glaring or really serious but subtle problems and professors
never looking inside the patient's mouth)? Do dental schools take on
patients that aren't in their "charity clinic" where the waiting list
for new patients is 4 months out minimum and usually 6 months or more?
Should I go to 1 of the free/low-cost dental clinics, even though our
income is really high and I will be taking up space that poor people
could be using, because money is still an issue? FYI, I live in the
Kansas City metro area.

Fourthly, could you refresh your medical genetics skills so that when
you have a patient who says "Locals don't work for me and my gums
bleed at the slightest touch despite the fact I brush and floss and
everything else imaginable", you would tell them "Schedule a visit to
the geneticist at your earliest convenience to be screened for Ehlers-
Danlos Syndrome"? Nearly every patient I just described or has a
health history like mine above has EDS. Don't believe me? Do a journal
search and it will become obvious. And I would honestly bet each of
you $5 billion (and I can almost guarantee I would win every single
time) that every single 1 of you has treated at bare minimum 1
undiagnosed EDSer (who the odds are that if they aren't desperately
seeing 20 to 100 doctors for help, they will be in 20 years) if you
have been in practice for 20 years. If I loose, I just find another
sucker to fall for my bet. :) I feel confident in saying you probably
have 1 who is among your current patients and you think they are
hypochondriacs (most common misdiagnosis for EDS and bunch of other
things) or they are lying. If your efforts lead to the diagnosis of 1
EDSer, you will be that person's biggest hero after the geneticists
who are selflessly working to find the gene and find treatments that
actually work and preventative measures to halt progression. Props to
Nazli, my biggest hero, and congratulations to myself for accurately
diagnosing EDS in myself, my husband, and both of my kids, just from
doggedly searching the net and journals for the answer, and demanding
that I and the rest of my family see a geneticist when even my
favorite doctors had absolutely no clue, and were highly skeptical. Oh
yeah, I unknowingly married a man with EDS like me, as have 6 others
of the far less than 1000 people I know of who have diagnosed EDS.
Imagine the odds of that when supposedly EDS is a rare, orphan
disease.

Thanks for reading this far, and feel free to take me up on the bet--
any amount is fine, though scrounging up a trillion dollars from your
pocket change might be a bit difficult. Any bet winnings will be
donated to the Ehlers Danlos National Foundation who will use it to
educate you [almost free CE credits, though you bet it would be free
for everyone with a trillion] and the NIH research/Dr. Byers in
Seattle/any other MD/DDS/PHD ready to jump on our bandwagon, except in
the case you have a trillion dollars spare, and then I will take a
mere million dollars as finders fee. (And I also bet that million
dollars would go to pay for med school for me, so I can research AND
treat EDS.)

A Thankful Christina
I am trying to be at least a little funny

helloooo!!!!!!!!!!! Christina ....the brave girl i hvnt seen b4 in ma
life..........u seems to b a cute girl and n innocent girl....MAY GOD
EASEN UR BURDENS ...AMIN.....ok tell me wot r u doing nwadays ..do u
wan to b ma frnd......good frnds,....???????????????dn say no
otherwise i will die,,...hehehehheheheheeh ok do reply...tc
xoxo
Mandana iqbal
Pakistan

.

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