To Everybody, The Cleveland Clinic..a Nightmare!

[Guest guest]

Dear Janet and every one else in the group,

Well I'm back from Naples and the Cleveland Clinic. The easiest way to say

it is it was a total waste of time. I had several of my doctors here tell

me that they thought the Cleveland Clinic in Naples was full of the " playboy

doctors " who enjoyed their weekends and half work weeks more than dealing

with patients. I have to say that I totally agree with that summary. I saw

three doctors the whole time I was there and they got worse with each visit.

The first one was the dermatologist who told me again that he didn't think I

had psoriasis on my arms and legs. I told him that my rheumatologist had

said that since I've been on prednisone the results could have been wrong

from the biopsies, but he didn't think so. He thinks all I have is a type

of genetic sun damage that can be precancerous, but isn't really that

serious. I asked him about my erythromelalgia, which is what turns my skin

bright red and burns all the time, and he didn't know anything about it. I

had to tell him that is was listed in NORD, the national organization for

rare disease, so he knew how to look it up. He came back and said that

aspirin has been a treatment choice that works best, and I know for a fact

that they don't use aspirin anymore and that hasn't been the treatment of

choice for over 5 years. I didn't point that out to him, but he told me to

see the rheumatologist next and then we would talk again right after.

Well we all have rheumatologist stories about how rotten they can be or what

jerks they can act like, just imagine all those stories rolled up into one

and you've met my doctor. First of all, he was the one that made me

reschedule all my appointments because he had " plans'' out of town, which of

course he didn't apologize for or even mention, not that I expected him too.

The first thing he did was complain about my medication. I tried to tell

him all the drugs I've been on, but he had to ask the questions and only

wanted yes and no answers. If I tried to explain something, he would cut me

off and say, " I don't need to hear this " . Finally, I said well then what do

you need to hear? and he just said Yes or NO. So I was frustrated but I

tried to do that too. Then he decided to examine me while I was saying yes

or no and I've never had someone hurt me so much in an exam. Where most

doctors know they are dealing with a chronic pain patient, they go out of

their way to be careful, he was just the opposite. I almost felt like the

thought I was faking the pain. My daughter was in the room with me and said

I was literally jumping off the table and he would said does that hurt? All

I could get out was Yes and stop it, and he was on to another place. I was

black and blue the next day all over my sides, arms and along my spinal

area. My hip hurt so bad the next day I could barely walk. When it was all

over he said I had arthritis from an undetermined source, maybe rheumatoid

and maybe PA, and probably osteo as well. (I said I knew all that before I

came here. I was so upset by this point I was almost in tears and almost

felt like a rape victim I was in so much pain. I really do plan to write a

letter to the main office in Cleveland and complain about him. I've never

had such a rude, and basically mean doctor in all my life. That was all he

did and he walked out. He didn't offer me any advice, any new medications,

want to run any more tests, or make any suggestions. He made me feel like I

had too many problems, should never had been on prednisone and he definitely

didn't want to treat me. The idea of working with me to help me feel

better, never entered his mind. He did tell me me I had inflammation along

my chest wall, I guess that was from all the cries I gave out when he was

stabbing me, but when I asked him what he recommended for that, he told me

to meditate. I've got nothing against meditation and have done it all my

life, but I wasn't prepared to hear that from him. He said he was stress

related, but I think my rheumatologist here at home told me it was PA

related. So needless to say, I'm staying with my current doctors. One

thing the whole visit did do was make me realize just what great doctors I

really do have.

My next appointment was with the internist. I was at the end of my rope by

this time and ready to just leave, but my daughter convinced me to give him

a try. So he walks in and says, he can't believe I'm on heavy narcotics for

my pain. I told him, or tried too about my jaw and how bad the bones are

and the fact the nerves are exposed and inflamed from all the joint damage,

but he didn't care. He looked at me and said, " I'm not giving you

morphine. " I just said, " I didn't ask you for any and not what I am here

for, that's why I went into pain management so I could always be regulated

and make sure I was safe with what I took. " He told me I would get the same

benefits from going to watch a sunset! My daughter and I was were just

shocked. I said, that's your advice, with all that's wrong with me? He

said, well you are too complicated of a case for me and have too many

problems. He said that he wouldn't want to treat me and that fact that I " ve

been on prednisone for 3 years was just asking for all sorts of problems. I

told him I'm down to 15mg from 60mg, but nothing I said again mattered. He

couldn't get past the pain medication. Then at the end he said, " Oh, well I

don't know anything about pain management anyway. " So he said, What do you

want from me? At the point, I just said nothing, I " m ready to get out of

here and we left.

So that was the whole great experience. I didn't learn a thing. OH and the

rheumatologist told me that Vioxx was very dangerous for heart problems,

even at 25mg, and then 5 minutes later the Internist told me that Vioxx was

perfectly safe and the last study was flawed. I never even told him what

his " great colleague " had said...It was a real night mare. When I got out

all I wanted to do was cry. It was a complete waste of my time and I am

still sore from all the poking. All I can say, is I hope that anyone who

goes to Cleveland Clinic goes to the one in Cleveland and hopefully they

aren't the same type of doctors there. I guess my experience could have

been a fluke and maybe someone else would have had a great experience, but

my daughter felt like she needed a drink when it was over with and all she

did was watch!.

The good news is I stayed an extra day with my daughter and we had fun going

out and shopping. I couldn't do as much as normal because of the exam, but

I still saw my sister and my niece for lunch. So it wasn't all bad. I'm

sorry I don't have any great news. I did manage to ask the Internist about

the leg vein problem and he blamed it all on the prednisone. I know some

people in the group were wondering about that question and how it can cause

edema. I also know that not everyone is on prednisone, so he didn't really

give me a good answer, but that was normal for the whole visit. That was at

the end and by then I had taken all I could of those doctors. I never did

see the dermatologist again. He got tired of waiting on me and just left.

So he didn't really care about the situation either. I don't know if it

would have been better if my husband would have gone with me or not. He

would have probably hit the rheumatologist, so I doubt it would have made

the situation any better...lol.

Talk about depressing. I wish I had better news to report, but for me it

was a waste of time and painful in the process. Take care and I'll write

more later. I'm still pretty overwhelmed by the whole experience. Take

care and I hope everyone has been feeling ok and doing well the past few

days. Love, Fran

Fran,

by the time you read this you will probably be back from the clinic

already.

You are in my thoughts and prayers and I hope they can help you there in

the way you want them to. I'm sure everyone here feels the same way. We

will be anxious to hear the news when you return.

Janet