Hi Everyone,
From what I have heard we should hold the MAYO. as well.

We all need to hang in their. Love, Roz

I was wondering how many of those Munchie symptoms really fit for any of you?? probably not very many of them.

* Dramatic but inconsistent medical history

* Unclear symptoms that are not controllable and that become more severe or change once treatment has begun

* Predictable relapses following improvement in the condition

* Extensive knowledge of hospitals and/or medical terminology, as well the textbook descriptions of illnesses

* Presence of multiple surgical scars

* Appearance of new or additional symptoms following negative test results

* Presence of symptoms only when the patient is alone or not being observed

* Willingness or eagerness to have medical tests, operations, or other procedures

* History of seeking treatment at numerous hospitals, clinics, and doctors offices, possibly even in different cities

* Reluctance by the patient to allow health care professionals to meet with or talk to family, friends, or prior health care providers

* Problems with identity and self-esteem

Let's see:

* Dramatic but inconsistent medical history NO

* Unclear symptoms that are not controllable and that become more severe or change once treatment has begun AT TIMES

* Predictable relapses following improvement in the condition VERY POSSIBLY

* Extensive knowledge of hospitals and/or medical terminology, as well the textbook descriptions of illnesses OH FOR SURE

* Presence of multiple surgical scars NOPE

* Appearance of new or additional symptoms following negative test results SOMETIMES

* Presence of symptoms only when the patient is alone or not being observed OF COURSE

* Willingness or eagerness to have medical tests, operations, or other procedures YOU BET!

* History of seeking treatment at numerous hospitals, clinics, and doctors offices, possibly even in different cities THAT'S WHY I'M HERE

* Reluctance by the patient to allow health care professionals to meet with or talk to family, friends, or prior health care providers NO

* Problems with identity and self-esteem NOT REALLY

So that could give me a score of 7/11 if administered by unsympathetic hands. (And I totally agree with Roz, you have to be very careful in going for the Mayo. That said, I think there is a lot of interdepartmental variation.)

Mike

Jo Here I Go,

* Dramatic but inconsistent medical history. I am a prior Cancer patient so the Docs are more Drama than I could ever be.

* Unclear symptoms that are not controllable and that become more severe or change once treatment has begun. My Sx are very unpredictable.

* Predictable relapses following improvement in the condition. Some days are better than others.

* Extensive knowledge of hospitals and/or medical terminology, as well the textbook descriptions of illnesses. NO. I was told by the Docs to educate myself.

* Presence of multiple surgical scars. NO

* Appearance of new or additional symptoms following negative test results. NO, the Docs at one time even tought I had Lymphoma because of their CT scan they ordered.

* Presence of symptoms only when the patient is alone or not being observed. No

* Willingness or eagerness to have medical tests, operations, or other procedures No. My husband makes my Doc appointments.

* History of seeking treatment at numerous hospitals, clinics, and doctors offices, possibly even in different cities. History of canceling appointments, that loved ones have made for me.

* Reluctance by the patient to allow health care professionals to meet with or talk to family, friends, or prior health care providers. No, just would want the Docs to be hopeful.

* Problems with identity and self-esteem. No way.

I have a report from a Neruo Doc who worked at the Cleveland Clinic, I will type word for word out if I have to. I just have no clue where my scanner is. Hugs, Roz

Hello Everyone,

Here is a bit of my report from a Neurosurgeon who worked with Hicks MD. Who most of you know is a top RSD DOC at Cleveland Clinic.

NOV. 3, 2005

This is an unfortunate 47 year old female who sounds like she developed radiclular arm pain and then neuropathic pain. She was DX as having RSD or complex pain disorder type 2.

ETC.. ETC.. ETC..

He again states:

I would recoomend that she see a pain MGT. specialists for this. If possiable, she could be referred to a neurosurgeon who specializew in pain mgt. who could consider doing something like a dorsal column stimulator or a trial for
this. I will try to send her to one of the pain mgt. specialists locally to see if they have anything else to off her.

To complete her work-up I recommend she get flexion extension cervical spine x rays.



My point being before I would have SCS I consulted with some top DOCS. They said no way, I was a bad canditate for that procedure. I believe we need to get several opinions at times. I am not MD shopping I am fed up with tablets. I want a MD who knows how to help me. So I can at least drive my Jaguar out of the driveway. Hugs, Roz

Heavens, Roz, what an amazingly amateur report. There isn't one definite thing in it.
And as for "see if they have anything else to off her." - I just hope that's a typo, but in case it's not, don't go back there, we like having you around
all the best!

I second that. I hope you find one. So you can drive you jag out of the driveway. Soft hugs.

As someone who has had the label as "possible Munchausen's" I can truly empathise with this person.
Unfortunately when one has ulcers caused by the poor circulation of CRPS that refuse to heal despite intensive medical care, there are often egotistical and arrogant doctors who can't believe "all their wonderful knowledge" has not been able to heal so therefore "the patient must be self-harming"
It is an incredibly demoralising and devastating thing to happen.
A psychiatrist is the ONLY one who can make this diagnosis, NOT some semi trained upstart who gets payoffs from insurance companies for getting people off their books!
For me, I had a wonderful Psychiatrist who laughed at the suggestion. Yes, I felt better but I will NEVER recover from the indignity caused by the pindick doctor who knew it all!
There is a far more common diagnosis being handed out these days amongst CRPS patients and that is Somatisation Disorder. This is a very complicated psychiatric disorder where the patient actually feels the pain and often has some signs of the disease but they don't really have it.
All in all, a horrible situation for anyone to find themselves in!

Hi Tayala and All! Yes--somatisation is a frequent "diagnosis" bandied about, PARTICULARLY for those patients in either work comp or civil litigation. The mtoive behind this can be rather "effective" in trying to reduce the COSTS associated with RSD/CRPS: The patient is "demoralised", so slinks away lest they CONTINUE to be labelled in this matter. The REAL harm comes when their OWN treating Docs start to "question" if their patient might indeed either be "faking" or "somatising" after getting hit with denial after denial for treatment and "reports" from these so-called "experts". A pretty effective "wedge" that can be placed between the patient and their own treating physician. Unfortunately, some Doctors fall for it....or, they get so tired and frustrated with continually "defending" their diagnosis of RSD, that they just throw their hands up in desperation and are reluctant to continue to treat the patient....or "pass them off" to someone else (like a shrink)....and the cycle continues.