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Date:         Wed, 7 Oct 1992 15:15:51 EDT
Reply-To:     "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
From:         "(Bill McGarry)" <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2958

                             THE HANDICAP DIGEST

                                 Issue # 2958

                         Wednesday, October 07, 1992

Today's Topics:


                                ******


                                Re: RSD Group
                                  RSD Group
                                  RSD Group
                                  RSD Group
                                    Pain
                                 Re: Doctors
                                 Leg antics
                       Hemolytic Uremic Syndrome (HUS)
                            Environmental Illness
                        Popliteal Entrapment Syndrome


                                ******


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Subject: Re: RSD Group
From: Jackie.Burtch@p19.f645.n105.z1.fidonet.org (Jackie Burtch)
Organization: FidoNet node 1:105/645.19 - Rob's Wreck Room, Longview WA


[This is from the Chronic Pain Conference]

On (28 Sep 92) Mike Lyons wrote to Jackie Burtch...

 ML>  JB>      Mike..  just a word of  caution..  seriously
 ML>  JB> question (interrogate) your
 ML>  JB> doctor if he  in any way  tries to order  steroids for
 ML>  JB> your  dads rsd..
 ML>
 ML> I am not positive, but I don't beleive my dad is on any steroids.  I
 ML> think that he might have taken them at one time, but the thing that
 ML> makes RSDS worse with my dad is that he is allergic to almost all
 ML> medicine.  It kinda limits the choices to give him for pain relief.
 ML> He will be going to Cleveland OH. soon to see the best in the nation.
 ML> Right now, his only alternatives seem to be an morphine pump or a (its
 ML> pronouced fent-a-nul) pump.  So we are hoping that Cleveland will have
 ML> some other alternatives, but from all the information we have about it
 ML>  we kinda doubt it.
 ML>
 ML>
 ML>  JB> He is now 40 with
 ML>
 ML> My dad is 43 and has had it for three years.
 ML>
 ML>  JB> one titanium hip.. while they wait for the other one to finish
 ML> crumbeling
 ML>  JB> <they want him to suffer with it as long as possible <even months
 ML> matter i
 ML>  JB> guess> due to his age and size <6 ft) they do not WANT
 ML>
 ML> Who are you refering to when you say "they want him..."?
 ML>
 ML>  JB> to do this until the
 ML>  JB> bitter end because he is so young.   With nothing for pain <they
 ML> dont want
 ML>  JB> an addict after all> <rolling eyes>.  So the hell he has been
 ML> through the
 ML>  JB> last 5 years is even worse then the rsd of the leg alone.  It
 ML> caused his
 ML>  JB> massive heart attack last winter.
 ML>
 ML> Are you seeing an RSDS specialist?  And if so, is he trying to get
 ML> treatment?
 ML> Was the heart attack caused by the medicine?  Well, I need to get
 ML> going.
 ML>
 ML>                               Take it easy...  Mikey.
 ML>

Hi mike :)  Michael has had RSD since 1985 he was in his early 30's then

*they* refer to the university of oregon health sciences center and the
university of washington medical center.

He has been seen by the best for years.  There is nothing they can do and
choose not to even address the issue of his pain.  University of Seattle is
the one who pushed the steroids.

Nope heart attack not brought on by medicine.  Heart attack brought on by
pain and suffering and prolonged stress.

I dont think there is an RSD treatment short of amputation or permanent
blocks that has not been done to mike.

thanks Mike type to you soon :
jackie

--
Uucp: ..!uunet!bunker!hcap!hnews!105!645.19!Jackie.Burtch
Internet: Jackie.Burtch@p19.f645.n105.z1.fidonet.org




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Subject: RSD Group
From: Arthur.Saus@p160.f72.n376.z1.fidonet.org (Arthur Saus)
Organization: FidoNet node 1:376/72.160 - Windows of the Worl, Columbia SC


[This is from the Chronic Pain Conference]

Hello Mike!

25 Sep 92, Mike Lyons writes to Arthur Saus:

 ML> Arthur, I would recomend that YOU get the facts straight.
 ML> The doctors at the clinic will also tell you that RSD spreads.
 ML> RSD DOES SPREAD according to specialists in RSD from around the WORLD.

I'm beginning to wonder if we are talking about two different
things here.  I do not disagree that RSD sypmtoms will spread to
involve progressively more of the same extremity where it started.
It certainly can do that, and there is plenty of medical literature
documenting that.

My point is that "spreading" to involve a completely different
extremity calls the diagnosis of RSD into question.  This is not
consistant with the way RSD behaves.

 ML> Yes, it is a rare disease, BUT it has been around since the civil war AND
 ML> it is not that rare anymore.  There are more and more cases of RSD
 ML> everyday.

Well, I continue to maintain that it is a very rare problem.  There
may be more and more cases called that, when someone can't find the
proper diagnosis, but I have seen no evidence to suggest that true
Reflex Sympathetic Dystrophy is becoming any more common.

 ML> We know of about 10-15 people here in the central Illinois area
 ML> that have RSD.

OK, that means it is awfully rare if there are only that few people
affected. I'm glad you agree on that point.

 ML> Also, just having pain in an extremity does not mean you
 ML> have RSD.  There are other "tell-tale" signs that lets a person know if
 ML> what they have might be RSD, but only a specialist in RSD can truely make
 ML> the diagnosis.

I agree that there are other symptoms besides pain that lead to the
diagnosis of RSD.  Interpretation of the various symptoms to
determine the diagnosis is certainly a job for physicians who have
seen enough of this problem to properly recognize it.  There are no
"specialty boards" in RSD however, so I question what you mean by
"a specialist in RSD".  It is only one of the pain problems that
involve physicians who deal with pain problems.

 ML> BTW, do you have RSD or know anyone personally that does?  And, Where did
 ML> you get your information that RSD does not spread?

No, I don't have RSD, but I have personally known many people who
have.  I didn't specifically tell you earlier, but I am an
Anesthesiologist and have treated many people who have had Reflex
Sympathetic Dystrophy.  My background includes extensive training
in Acute and Chronic Pain Management.  My information comes from my
professional training and is easily verified in reference books on
pain management.

Arthur

--
Uucp: ..!uunet!bunker!hcap!hnews!376!72.160!Arthur.Saus
Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




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Subject: RSD Group
From: Arthur.Saus@p160.f72.n376.z1.fidonet.org (Arthur Saus)
Organization: FidoNet node 1:376/72.160 - Windows of the Worl, Columbia SC


[This is from the Chronic Pain Conference]

Hello Mike!

25 Sep 92, Mike Lyons writes to Arthur Saus:

 ML> I just got done eating dinner and got back on the bbs.  I read my
 ML> reply to Arthur and wanted to say that I am very sorry for the tone of the
 ML> response.  I do not wish to start problems.

I agree with you, I'm not interested in starting any problems
either.  I also don't like to see medical misinformation spread,
although I know it is usually being done so with the best of
intentions, by folks who don't realize that what they are saying is
not EXACTLY right.  I can probably empathise with you and your
frustration as well or better than most others since I have seen
many of these problems in my medical practice.  RSD is a terrible
phenomenon to have happen to anyone, but especially to someone you
love and care deeply about.  It is not well understood, even by
physicians who have carefully studied this problem and do know what
little there is to know about it currently.

Most of your information suggests that you have a pretty good
understanding of this, but it's not exactly correct.  If you are
interested in this problem, I would encourage you to study it
further, and correct some of the flawed reasoning you presented.
Maybe you will be interested in medical research, and can teach the
rest of us what the real basis is for this disease, since nobody
completely understands it currently.

 ML> I am 24 years old, but dad and I were not real close once I became
 ML> a teenager.
 ML> Well, our relationship got a lot better after I became 19.  We have a good
 ML> relationship now and it does bother me a lot to sit here not able to help
 ML> him and watch him suffer.

I'm sure this is difficult for the physicians who are attempting to
care for him also.  They are doing the best they can to treat a
rare problem, when we probably have not yet discovered to
ultimately perfect therapy for this problem.

 ML> I have read a lot and went to the Dr.'s with
 ML> him every chance I got so that I could learn as much as possible, so when
 ML> Arthur quoted my message and basically implied that I did not know what I
 ML> was talking about, I was quite upset.  Arthur, I wish I didn't
 ML> know anything about RSD and I wish my father didn't have it, but he has it
 ML> and I do know a lot about it.

I'm sure you do, especially for someone of your age.  I did not
intend to imply that you didn't know anything about it.  Your
statements merely suggested an incomplete understanding, then you
made conclusions based on those errors.

Rather than arguing about the subtleties of this disease process
vs. another disease process, I would encourage your further study
to gain a better understanding of medicine if this is where your
interests lie.  I was older than you are when I decided to go back
to medical school!

Arthur

--
Uucp: ..!uunet!bunker!hcap!hnews!376!72.160!Arthur.Saus
Internet: Arthur.Saus@p160.f72.n376.z1.fidonet.org




------



Subject: RSD Group
From: Mike.Lyons@f210.n232.z1.fidonet.org (Mike Lyons)
Organization: FidoNet node 1:232/210 - The Lyons Den, Pekin IL


[This is from the Chronic Pain Conference]

 AS> NO!!!  Sorry, but this is not correct!!!  This is not a
 AS> "normal" function of the Sympathetic Nervous System!

Yes, I admit I made a mistake.  With all of the reading and
watching the video and looking at information on disk, yes I
screwed up.  It is NOT the Sympathetic nerve.  I can not remember
off the top of my head which one it is.  It starts with an "A" if I
remember correctly and is something like anatomical nerve, is this
correct?  I can not look it up right now because the lawyer
currently has the book and video and ALL of our pamplets,
photocopies and disks on RSD.

 AS> Your attempted explanation of the process was
 AS> entertaining, and may have some truth in it, but it is
 AS> not based in fact!  It was pure conjecture, and I
 AS> suggest you should have stated that in your message
 AS> also.

I did make the mistake on which nervous system it was, but it is
not conjecture!  This is the laymans terms for RSD as I got it from
the specialist (in RSD) who is treating my father.  These "facts"
are what is currently accepted as medical fact by specialists in
RSD around the world.  Now, nothing says that they wont learn
something new that may contradict some of these facts, but these
are what the consesus says to be fact.  Dr. Edwards had another
meeting this June(I believe it was June) with about 36 specialists
in RSD from around the world so that he can keep up on all the new
facts.  He is my main source of information.

I had also made a comment about "education for doctors".  Our
disagreement on RSD here should be proof that there is a need for
research and education in the form of journals and seminars to
teach doctors what the symptoms are so that they can recognize the
POSSIBILITY that a patient might have RSD and get them to a
specialist to make the diagnosis.  Our disagreement is not
something minor, there are doctors out there having the same
disagreement.  There are even doctors who disagree on the existance
of RSD!  You and I are openminded enough to look at each others
facts and examine the possibility that one of us might be wrong,
but unfortunately some doctors are not that way.  My father has
been diagnosed with RSD and it has spread.  There are three
specialists who in there medical reports have stated that it has
spread.  Now, if it isn't RSD, then what is it and why have so many
doctors made the same diagnosis?  Yesterday the 29th, he had a test
that shows the body temperature in colors.  Normally, your body
will show red for warm, well from the waist down there was green,
blue and black.  This shows that the body temperature is real low.
When he first had the test done it was only his left leg that was
showing funny colors.  I realize that we both feel that we are
right and the other one is wrong, but if you really would like to
see some of the information, write me at

                PO Box 191
                Groveland, IL 61535

I can not give you copies of some of the information because of
copyright laws, but the info I can give you I will.  And, if you
are still skeptical that RSD spreads, I can even give you the phone
number for Dr. Edwards and you can talk to him or most likely his
secretary but you might be able to get info from them.

                                        Later...  Mikey.

--
Uucp: ..!uunet!bunker!hcap!hnews!232!210!Mike.Lyons
Internet: Mike.Lyons@f210.n232.z1.fidonet.org




------



Subject: Pain
From: Nadine.Thomas@f10.n300.z1.fidonet.org (Nadine Thomas)
Organization: FidoNet node 1:300/10 - Aztec Maximus, Tucson Az


[This is from the Chronic Pain Conference]

 MR> I believe I have seen you in the AA conf. Even when I was drinking
 MR> I would refuse pain medicine because I disliked drugs and druggies.
 MR> After a surgery I refused it and just put up with the pain. After
 MR> I sobered up a sponsor told me I was crazy. He said to be careful
 MR> and follow the doctors orders to the "T" but to suffer needlessly
 MR> wasn't sane. Since I see a doctor quite often and he monitors me
 MR> through blood tests and also the amount I take and I feel fairly
 MR> secure in taking what I do. He is also aware I am in recovery and
 MR> except for extreme pain over a very short period he avoids
 MR> anything that might cause a problem. Even then he will try steroid
 MR> bursts before anything else. Each time I require a little more for
 MR> it to be effective but it still works on a short term basis with
 MR> some relief.

Hi again.... sorry for the delay in answering but I just got home
from 3 weeks in the hospital again... actually it was 9 days in one
hospital and then 12 days in a physical rehab unit.

I too am on steroids and I will say to be very careful with them.
I am currently on SEVENTY mg. a day (40 in the AM and 30 in the
afternoon) - I have been on steroids for 12 years and have put on
ONE HUNDRED AND TWENTY POUNDS.  My heart is working for TWO bodies,
I have diabetes from it, my blood pressure is bordering stroke
city, and I have had bouts of LIFE THREATENING INFECTIONS
(including a severe infection in my BLOOD) which have caused me to
have several surgeries.  I have been admitted to the hospital FIVE
times this year alone and each time they increase my prednisone
making it harder and harder to get off of.  The doctor told me that
100 out of 100 people on prednisone will have the nasty side
affects - which can include loss of eyesight, loss of kidney
function etc.

Am I trying to scare you? Yes.  I am trying to help you avoid what
I am suffering through for a couple of weeks or months of relief.
Be very careful.  It is like taking an addictive drug - for the
moment it feels good but down the road (and the prednisone road is
VERY SHORT) we pay the consequences of that short time of relief.
Please, post back to me - I can use the contact right now.  Today I
only took 2 doses of pain meds and I feel really good about that.
I know I will have to take one more but it feels good to know that
I can cut back like this and KNOW that it is okay and that I DO
recognize that I don't NEED the meds like I did before I went into
the hospital.

Take care of yourself.

Nadine

--
Uucp: ..!uunet!bunker!hcap!hnews!300!10!Nadine.Thomas
Internet: Nadine.Thomas@f10.n300.z1.fidonet.org




------



Subject: Re: Doctors
From: Bob.Moffatt@f94.n105.z1.fidonet.org (Bob Moffatt)
Organization: FidoNet node 1:105/94 - Big Bob's BBS, Portland OR


[This is from the Chronic Pain Conference]

> I know how you feel, Bob.  So, tell me, how's the Optifast thing work and
> how much does it cost (or are you lucky enough to have your insurance pay
> for it)?  I sure do need to drop a few myself, but just don't have the
> willpower.

It is going okay if I would quit cheating.  It is real hard, I am
so use to eating and eating quite a bit at each sitting.  It is all
Liquid and is basically like a fast for me it will take about 5 or
6 months of drinking the stuff they give you and nothing else.  I
am lucky, insurance is paying for it and thats why I feel guilty
about cheating.  I have been told by other people that it cost them
$100+ per week.  Its very spendy.  Its really suppose to be a good
program and I diddn't cheat the 1st week and dropped 8.6 pounds.
Then I cheated the 2nd week and gained 2.5 pounds back.  I cheated
once this week and am praying that I lose.  They probably won't
tolerate gaing too many weeks, hahahah.  Well Linda, I need to get
this sent so I can go play Global Wars, never thought I would be
hooked on that but now I am, you take care and I will TTYL.

                                      Bob

--
Uucp: ..!uunet!bunker!hcap!hnews!105!94!Bob.Moffatt
Internet: Bob.Moffatt@f94.n105.z1.fidonet.org




------



Subject: Leg antics
From: Val.Dunn@f337.n202.z1.fidonet.org (Val Dunn)
Organization: FidoNet node 1:202/337 - Yak Attack BBS, La Mesa CA


[This is from the Amputee Conference]

-> Now if I could only figure away to pop the leg without having to roll
-> the neoprem(sp) sleeve I can do things like that.  Sounds like fun.
->
-> John

I had one of those sleeves and understand how it feels.  I enjoy being
with people who can take the leg with a joke.  I always try to explain
to those who feel it's cruel... You make jokes about and tease people
with wierd last names, red hair, real tall or real short.  It's normal
for humans to pick on physical characteristics of others.  I have a
fake leg and it's fun to play with.  I went to a picnic planing session
and when I walked up one of my friends was having a heated discussion
with a lady and he asked for a club to beat her with.  He looked at me
and smiled and said "Hand it Over".  I dropped the leg and gave it to
him.  He plopped it down on the table with the same beating threat.  We
all thought she'd NEVER start breathing again.  It seems she was unaware
that I was an amp.  I am very comfortable with these types of friends.

How about you?

--
Uucp: ..!uunet!bunker!hcap!hnews!202!337!Val.Dunn
Internet: Val.Dunn@f337.n202.z1.fidonet.org




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Subject: Hemolytic Uremic Syndrome (HUS)
From: Paul.Goedicke@p0.f10.n260.z1.fidonet.org (Paul Goedicke)
Organization: FidoNet node 1:260/10.0 - Med TechNet/WNY Mic, Buffalo NY


[This is from the Rare Disorders Conference]

I have an 8-year-old son who had HUS 4 years ago. After the initial
renal failure, he has regained about 50% function. Does anyone know
of any recent published data on long-term prognosis after HUS? The
renal specialists are very non-committal with answers, but do not
discount the possibility of renal transplant within the next 10
years or so. It appears that treatments for hemolytic uremic
syndrome have made little progress in 4 years. I would appreciate
any information anyone could provide. Thanks.

--
Uucp: ..!uunet!bunker!hcap!hnews!260!10.0!Paul.Goedicke
Internet: Paul.Goedicke@p0.f10.n260.z1.fidonet.org




------



Subject: Environmental Illness
From: Tony.Schenk@f18.n307.z1.fidonet.org (Tony Schenk)
Organization: FidoNet node 1:307/18 - Cuerna Verde, Pueblo Co


[This is from the Rare Disorders Conference]

Can anyone tell me where to find information on Environmental Illness.
I have a sister who has been diagnosed as having this condition.  She is
extremely sensitive to a wide variety of petro chemicals, scents used in
cosmetics, shampoos, laundry products, etc., paints, molds, and hundreds
of other things.  After years of frustration and visits to
psychiatrists, allergists, neurologists and other specialists she was
finally diagnosed as being sensitive to these environmental products.
The condition is pretty well under control now as long as she doesn't
venture out of her house very often.  Anyway, I would appreciate if if
someone could tell me where I can get more information on the condition.
Thanks.
      ****   Tony   ****
___
 X OLX 2.1 TD X Help...I can't find my "any" key!!!

--
Uucp: ..!uunet!bunker!hcap!hnews!307!18!Tony.Schenk
Internet: Tony.Schenk@f18.n307.z1.fidonet.org




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Subject: Popliteal Entrapment Syndrome
From: Anne.Collins@f15.n363.z1.fidonet.org (Anne Collins)
Organization: FidoNet node 1:363/15 - Nurse Corner BBS, Orlando FL


[This is from the Rare Disorders Conference]

Can anyone tell me anything about this syndrome?  My husband has
been diagnosed with this and has not only had one above-knee
amputation, but has now had five toes amputated from the other leg
and faces the possibility of losing this leg as well.   The doctors
cannot seem to agree on a diagnosis - as he has also been diagnosed
as having Buerger's Disease.  He has been battling this for the
past 15 years and has been through innumerable operations that
include bypass grafts and amputations.  I have been unsuccessful in
obtaining any information on "Popliteal Entrapment Syndrome" at
all, and only the most minimal amount of information is available
regarding Buerger's Disease.  All I know is that PES is a very rare
disease and only a handful of people have been diagnosed with
this.   Any information would be most appreciated.

--
Uucp: ..!uunet!bunker!hcap!hnews!363!15!Anne.Collins
Internet: Anne.Collins@f15.n363.z1.fidonet.org




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                                ******

                  End of Issue # 2958 of the Handicap Digest

                                ******
Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU