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Old 05-25-2004, 04:34 AM   #1
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Dee74 HB User
Unhappy First Rheumy appt.. SO upset

I had my first appointment with the rheumatologist yesterday afternoon.. I can already tell, I don't like this guy at all.

First of all, he's an older doctor.. and doesn't seem to believe in Fibro AT ALL. He completely ignored me when I mentioned it TWICE. I thought Rheumys were the main doctors with this diagnosis? I mean, granted my new MD that I have wants to rule other things out first, but my old doc did diagnose it. The new doc is the one who sent me to this guy and told me that he would be the one to diagnose it and help me deal with it better. He seemed to have no clue at all.

Anyway.. one of the first things he asked me was "Well, are you depressed?". I said "no, I have no reason to be.. but wouldn't you be a bit down in the dumps if you felt like total **** every day for over 3 years?". He just stood up, folded his arms, and said "Well, what do YOU think is wrong with you?". I said "I don't know.. if I knew THAT, then I wouldn't be paying thousands of dollars in doctor bills right now".

He didn't check tender points or anything like that.. he wiggled my fingers and bent my knees. That's it. He said that I show NO signs of rheumatoid arthritis and that he didn't understand why on earth I came to him anyway. I told him that my DOCTOR sent me there.. not my idea. He just shook his head said that he can't do anything for me. He said "you know, sometimes people just have pain.. that's all there is to it and there's no reason to be concerned.. I don't think you really have anything going on". WHAT THE ****???

He did order some blood tests.. two different Lyme disease tests (I guess he WAS listening when I told him that I was bitten by a tick a little over 3 years ago and got a big rash from it), an RA test, ANA, and tests for my thyroid. He said, "I'll just see you ONE more time when I get the results".

I walked out of there in tears. I feel like I'm no closer to getting out of this "limbo world" than I was when I first got there. Not to mention, he made me feel like a hypochondriac.

I'm about ready to just give up.. I swear. I'm SO unbelievable sick of this. I truly thought he'd help me. I'm just praying to GOD that something shows up on those tests. At this point, I don't care if it's Fibro, Lyme, or what.. I just want a DIAGNOSIS so these butthead doctors will stop treating me like I'm crazy. I'm NOT. I hurt and I'm sick of them not believing me at all. I was an extremely happy, fun loving, ACTIVE person before this stuff hit me. I haven't been the same since.

I just want 'me' back.. that's all I ask

 
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Old 05-25-2004, 05:10 AM   #2
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keystone206 HB User
Re: First Rheumy appt.. SO upset

Dee,
You don't happen to be in Iowa do you? The reason I ask is last year I saw a nuero and he basically treated me the same way. he asked what do you think is wrong with you? Then proceeded to tell me how I was wrong. He didn't do any testing and I left in tears!
I hope you find another doc!
Lynda
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Lynda

 
Old 05-25-2004, 05:16 AM   #3
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Dee74 HB User
Re: First Rheumy appt.. SO upset

No I'm in western NY. I just don't get why the heck doctors think it's just OK to treat us like this.. I mean, I'm paying them to "fix" me and make me feel better.

He asked me what "drugs" I was taking.. so I did have to tell him that I have to take hydrocodone every now and then. He said "how many times each week do you take them?". I told him the truth.. once in a blue moon! I MIGHT take one hydro once every 1-2 weeks.. that's it. I told him I didn't like taking things like that, just trying to get the point across that I'm not a druggie.

OH and he asked me if I "shot up"!!!!!!!!!!!!!!!!!!!!!!! I was like noooooooooo why would I do that??

My mom went with me, boy was she ticked off. She flat out said "my daughter doesn't do drugs". He shut up after that.

I HATE DOCTORS.. really I do

 
Old 05-25-2004, 06:07 AM   #4
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typingterror HB User
Re: First Rheumy appt.. SO upset

My heart goes out to you as I have been in that position so many times and being ignored is so heartbreaking. I was so naive and wanted to kiss doctor when I was first diagnosed as having fibro as I thought I had finally found an answer on my endless search. Little did I know that it was like someone saying you had the plague. I wasted two years with doctor who originally diagnosed me as she really had no interest whatsoever in treating me because the normal Vioxx, Elavil, Bextra and physical therapy did not work. She would prescribe me some pills and tell me to come back in 2 months and first words out of her mouth when I returned was "What are you doing here?" Huh. It was do demoralizing. I had originally thought she was a caring person, but found out she really did not give a flip. Doctors are so totally tactless when it comes to communicating with their patients. Maybe they don't have enough fiber in their diet. Don't give up, but continue the search until you find someone in medical profession who gives a hoot and it might not be a specialist. This continual search for doctors makes our medical records so huge that we terrify the doctor before we even see him/her as they already have us pegged as a "hypochondriac". Maybe we need to take an ad out in paper pleading to medical profession and entitle article "Who Will Help Me?" (TT)

 
Old 05-25-2004, 09:42 AM   #5
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WICHRIS HB User
Re: First Rheumy appt.. SO upset

Dee I have to say I am absolutey outraged by how your rheumatologist
treated or shall I say mistreated you during your visit ! I would encourage
you to let your PCP know exactly how bad you were treated at this appt. My
experience has been much better in that my PCP suspected Fibro but referred me to a rheumatologist in his words had experience in diagnosing Fbro..at that
appt. the rheumatologist took about an hour in discussing the onset of my
symptoms,the severity,the physical limitations I had and the current medications I was on..he then did an extensive physical exam and at that
time I did not know about tender points,etc but when he did put pressure on
certain areas-hip,shoulders,etc I almost flew off the table in pain..at that
point based on everything he made a diagnosis of fibro-he did say it would be
a life long illness and referred me back to my PCP for all my meds,etc..Please consider asking your PCP for a referral to a rheumatologist that has experience
with treating fibro,etc.. I can honestly say that my current regimen of Neurontin,Flexeril and now Vicodin ( because my recent MRI showing a disk
at C 5,6 pressing on my spinal cord ) has my pain somewhat under control.
I just dont understand how some doctors dont believe in fibro as a legitimate
medical diagnosis ! I am wishing you the best and please hang in there and dont stop trying..you will find the right doctor !

Chris

 
Old 05-25-2004, 11:00 AM   #6
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careyb31 HB User
Re: First Rheumy appt.. SO upset

I am finding on my own quest to find out what is wrong with me that you really have to take your health into your own hands. I started asking around if anyone knew of a doctor who might be someone of a "quack", but helped them. I have found a doctor who is in Reno, Nevada where people from all over the country come to see him who is treating my sx. (not necessarily dx me with anything), and is helping me. At least this gives me hope until someday I find out what really might be wrong with me. If anyone is interested his name is Michael Gerber and he has the Gerber Medical Clinic in Reno, Nevada. Flights are usually cheap into that airport and if you aren't having luck with traditional methods and doctors, this is also a great way to go.

 
Old 05-25-2004, 11:51 AM   #7
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Dee74 HB User
Re: First Rheumy appt.. SO upset

Thanks for your replies everyone

I'm going to call my PCP tomorrow morning and let her know what happened yesterday. She told me at my last appointment (couple weeks ago), that if the Rheumatologist couldn't find anything, that she would be sending me to Cleveland, Ohio. Supposedly there's a really great clinic there that specializes in "unknown and rare diseases" - her words. I just REALLY hate having to drive 4 hours to see a new doc. Not sure how I will manage that since I have 2 young children in school. I'm sure I'll figure it out.

I just really had my hopes up that the Rheumy would be able to help more. I still have to find out what the blood tests show.. but lord I don't even want to go back to him!!! I can see it now, if the tests don't show anything, there's no telling what that idiot will say to me.

From what my PCP says, the lyme test may not come back with anything, but also that that won't necessarily mean that I don't have it since sometimes it won't show up years later because it's no longer in the bloodstream, yet it's in the joints and muscles. Strange. I don't know anymore.. first they thought Fibromyalgia, Lupus, then MS, then back to Lupus, now I'm up in the air again. GAAAAAAAAAAAAAAAAAAH I just want to scream!!!!

 
Old 05-25-2004, 03:30 PM   #8
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tkgoodspirit HB Usertkgoodspirit HB User
Re: First Rheumy appt.. SO upset

Quote:
Originally Posted by Dee74
I had my first appointment with the rheumatologist yesterday afternoon.. I can already tell, I don't like this guy at all.

First of all, he's an older doctor.. and doesn't seem to believe in Fibro AT ALL. He completely ignored me when I mentioned it TWICE. I thought Rheumys were the main doctors with this diagnosis? I mean, granted my new MD that I have wants to rule other things out first, but my old doc did diagnose it. The new doc is the one who sent me to this guy and told me that he would be the one to diagnose it and help me deal with it better. He seemed to have no clue at all.

Anyway.. one of the first things he asked me was "Well, are you depressed?". I said "no, I have no reason to be.. but wouldn't you be a bit down in the dumps if you felt like total **** every day for over 3 years?". He just stood up, folded his arms, and said "Well, what do YOU think is wrong with you?". I said "I don't know.. if I knew THAT, then I wouldn't be paying thousands of dollars in doctor bills right now".

He didn't check tender points or anything like that.. he wiggled my fingers and bent my knees. That's it. He said that I show NO signs of rheumatoid arthritis and that he didn't understand why on earth I came to him anyway. I told him that my DOCTOR sent me there.. not my idea. He just shook his head said that he can't do anything for me. He said "you know, sometimes people just have pain.. that's all there is to it and there's no reason to be concerned.. I don't think you really have anything going on". WHAT THE ****???

He did order some blood tests.. two different Lyme disease tests (I guess he WAS listening when I told him that I was bitten by a tick a little over 3 years ago and got a big rash from it), an RA test, ANA, and tests for my thyroid. He said, "I'll just see you ONE more time when I get the results".

I walked out of there in tears. I feel like I'm no closer to getting out of this "limbo world" than I was when I first got there. Not to mention, he made me feel like a hypochondriac.

I'm about ready to just give up.. I swear. I'm SO unbelievable sick of this. I truly thought he'd help me. I'm just praying to GOD that something shows up on those tests. At this point, I don't care if it's Fibro, Lyme, or what.. I just want a DIAGNOSIS so these butthead doctors will stop treating me like I'm crazy. I'm NOT. I hurt and I'm sick of them not believing me at all. I was an extremely happy, fun loving, ACTIVE person before this stuff hit me. I haven't been the same since.

I just want 'me' back.. that's all I ask
Wow! First of all, you can't know if you have RA unless you have a blood test that shows the RH factor in you blood cells.

My advice, get another doc, it's your right. Now that you've been referred, you don't have to stick with that particular doc. Are there other rhuemies at the clinic or in the area you live? Check with their offices to see if they take your insurance then try to see one of them, simply tell them you weren't happy with the other doc. You have the right to have a doc that you feel comfortable with.

Second, try, try, and try again, to get a referral to a Pain Management Specialist. These guys are the "god" send to people with pain, no matter where it comes from. I simply am in love with mine, I would live in his yard if he'd let me.

Good luck and don't settle, and don't give up!
tk

 
Old 05-25-2004, 06:23 PM   #9
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mollymadison HB User
Re: First Rheumy appt.. SO upset

I had my first appointment with my PCP today after being in the ER 2X last week. The blood tests in the ER show liver imflammation. All hep tests are negative. On the 2nd ER visit, the Dr immediately said it was fibro. Today when I visited my PCP, she flat out said she thinks I have a problem with pain meds! (She didn't seem to have a problem prescribing 80 Lortab at a time after a car wreck last year.) She has referred me to a Rheumy, pain specialists and a heart specialiasts (she says I have a murmur). I asked for a note off from work for at least the rest of the week and so far she has refused. Said she could only give one for today's visit. I told her I was filing for ST disability with mu company. She said I would have to make another appt to complete those papers. She will not be in the rest of the week! I emphasized over and over that I am extremely fatigued. Walking to the bathroom tires me out. Work is not understanding. I have to have a Dr's note to be off. I have decided to switch PCP's after this horrible experience. I went to her for help and came out feeling angry, confused, frustrated, and still no closer to a DX. My husband is equally frustrated and completely ****** at the Dr. Hopefully, the new Dr will be able to offer more advice. I am going to try an internist.

 
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