Re: Just returned from the Mayo Clinic

[Guest guest]

Hi Heidi,

I'm very happy for you that you have had a good rest and a good experience

with Mayo.

Not that anything has really changed for you but it's great to have a good

experience once in a while.

Best wishes, poncho - GA

[Guest guest]

Glad that your experience there was good. It does make one feel good

when one gets a professional that has learnt to accept more the

norm, and the staff are just as friendly and empathetic (is that how

you say it? *L*).

Now if they would just say that a water prep for every other part of

the body during a CT scan would be best....we can only live in hope

*L*.

[Guest guest]

>

> My experiences at the Mayo Clinic left quite an impression. I've

never seen such an efficient, prompt and highly trained group of

people all in one place like that before.

Hey Heidi,

I guess maybe I should have gone to Jax rather than Mayo in

Rochester,MN. I think I spent more time waiting there than anything

else. I felt like part of a cattle run than a human patient with

feelings. The doc I saw decided that I didn't have pancreatitis

before he ever even saw me. And I know he couldn't have read all the

records I brought in that short of time. He was just trying to one-up

Dr Cotton I think because as soon as I mentioned Dr Cotton as the doc

who diagnosed me, this Mayo doc's demeanor changed immediately as

well as the way he treated me. I couldn't wait to get out of there.

I'm really glad you had a good experience.

TN Diane

[Guest guest]

Diane,

Gee my experience at Mayo in Rochester seems to very similar to yours! What

doctor did you see? I saw Dr. Chari on Monday for about 5 minutes. On Monday

and then on Wednesday, I saw the resident, Dr. Lara. The scary thing was that

when I saw him the second time on Wed, that was his very last day at Mayo. He

was leaving to go to Texas to be a full-fledged GI doctor! Dr. Lara was a total

jerk. He was totally convinced I had none of the illnesses I've been diagnosed

with. He was absolutely convinced that my only problem was that I was addicted

to pain meds. He insisted that all I needed was to go through Mayo's three week

outpatient pain management program.

What the didn't know when I saw him the second time on Wednesday of that week

was that I HAD seen a psychiatrist in the pain clinic on Tuesday. The Mayo

shrink told me that he didn't think their pain program would be of much benefit

for me. He talked to me for over an hour and was incredibly kind. He explained

that their program helped you learn tools to deal with pain that could not be

controlled with pain medicine. He said it was most helpful with chronic back

pain. He told me that for most with cp, narcotic pain meds are an absolute

necessity. He told me that if I ever got to the point that the pain meds were

not able to reduce my pain to a tolerable level on a daily basis, their program

might be of benefit for me. He said that, for now, it seemed like I had a very

good pain mgmt doctor at home and he recommended that I continue the current

plan - long acting pain meds routinely with quick acting pain meds for breakthru

pain and admission to the hospital for IV fluids and IV pain/nausea meds when

the oral meds can't keep things under control.

When I told Dr. Lara that I HAD seen one of their doctors in the pain clinic and

told him the doc's recommendation, he started stuttering about and then just

kind of stammered from one thing to another, not really telling me anything. He

told me that I didn't have lupus - never mind I was diagnosed 8 years earlier

and it was my rheumatologist that sent me to Mayo. I told Dr. Lara that my

rheumatologist wanted me to be seen in the rheumatology and immunology clinics

at Mayo in addition to the GI clinic. That was when he started telling me that

I don't have lupus and that he didn't think I had any autoimmune diseases.

Never mind the fact that both my sister and I have had genetic testing and we

both got a double whammy - gene from each parent that can cause autoimmune

diseases. My sister, daughter, and I all three have the antiphospholipid

syndrome - an autoimmune clotting disorder, which is very easily definitively

diagnosed by blood tests. Between myself, my sister, and my daughter, we have

about 10 different autoimmune diseases and this STOMACH doctor is telling me I

have none and that there's no reason for me to be seen by the rheumatology or

immunology clinics!

He also told me I'd probably never had an attack of acute panc - never mind the

amylase as high as about 800 and lipase as high as 1960 and elevated on lots of

other occasions. He told me that other things could cause the amylase and

lipase to elevate, but when I asked what, he just said 'a lot of things'. He

told me I didn't have autoimmune liver disease and that my liver enzymes had

never been elevated. When I told him they had been as high as almost 800

(normal is around 30-35) on many occasions prior to the time that I was put on

medication for autoimmune liver disease. He insisted that none of the lab work

I'd provided him with showed my liver enzymes elevated. When I pointed to page

after page after page of liver enzymes elevated anywhere from 10 to 25 times the

normal limit, he again just stuttered and stammered. There was more but it was

all so ridiculous I have forgotten a lot. He ended the visit saying that he

couldn't say for sure that I do have chronic pancreatitis, but he couldn't

really say for sure that I didn't have it either. He said the only thing he

could offer me was to suggest that I try taking antioxidants since they

sometimes help with chronic pancreatitis.

I called my rheumatologist's office the very next morning to let her know what

had happened. When the GI said I don't have lupus or any autoimmune diseases,

he was treading on her territory! Less than an hour after I called her office,

I got a call on my cell phone asking me to come back to the GI clinic and see a

different GI doc. It was a totally different atmosphere. The other GI, Dr.

Topazian, was so nice. He told me that I had obviously had numerous attacks of

acute pancreatitis as well as months of dangerously elevated liver enzymes. He

said lupus was outside of his area but he certainly knew you could have lupus

and not have a rash on your face. (the other GI had said I couldn't have lupus

since I didn't have a rash on my face - thing is I DO have the lupus butterfly

rash on my face - it's not always obvious, especially with makeup, but I do have

it and even had a biopsy with two chunks of skin cut out of my face prior to my

lupus diagnosis and the rash was absolutely consistent with lupus!

They did try to get me into the rheumatology and immunology clinics, but by the

time they tried to set it up, it was Thursday and I was set to fly home on

Sunday. Since I didn't really get any benefit from the Mayo Clinic through

Thursday, I didn't see any sense in changing my flight back, which would have

cost me the same or more as the original ticket - about $400. Not to mention

the extra days at the motel.

They ended up saying that they couldn't say for sure whether or not I have cp.

They said the attacks of acute panc were probably caused by SOD but they

couldn't be sure since they couldn't do the manometry via ERCP because of my

gastric bypass.

I really think the trip to Mayo was mostly just a huge waste of money and it was

very stressful for me and my entire family. I did what my rheumatologist wanted

and went there and let them poke, prod, stick, and everything else. That will

NEVER happen again! When my rheumy asked me what I thought had gone wrong with

the first GI, I told her that I felt he had made up his mind that the only thing

wrong with me was that I was addicted to pain med and once the doctors decide

that, there is no getting beyond that. She said, " But he had a tremendous

amount of documentation showing that your lab work has been at the dangerous

level on many occasions. " I told her that it didn't matter because he had

decided I just wanted drugs and once a doctor decides that they have blinders on

and can no longer see anything else. She apologized to me for being treated

badly but then told me that she was glad it was me because I had stood up to the

doctor and let her know what was happening. She said a lot of other patients

would have just done nothing because they didn't have a good enough

understanding of things to dispute the doctor.

On the one hand, I guess she is right. However, I think that she still doesn't

really understand that it doesn't matter how much knowledge you may have, once

the doctor decides you are just a druggie, no amount of talking, definitive lab

work, or anything else is going to change anything! I do at least have the

option of not giving any doctor the chance to treat me badly more than once!

W

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