The Appointment with Doctor Perv | Rheumatoid Arthritis Warrior

The Appointment with Doctor Perv

gardenI wish this RA really were a lie.

  • What kind of mother would fake not being able to put on her child’s socks?
  • What kind of mother would make her children cook dinner, wash the dishes and clean the house so she could live out her dream of feigning illness?

Certainly not the same mother who carried the heavy burden working 18 hour days for 20 years to care for her family, her neighbors, and her church.

The beginning

The sign in the waiting room said, “Dr. __ does not carry liability insurance.” The walls were peeling. The posters were faded. The floor was dirty. There were not computers or modern equipment to be seen.

After 45 minutes, the single employee told me to leave my 2 adult daughters in the waiting room because, “We won’t bite you.” Katie Beth said we’d prefer to stay together. They eventually gave in.

After Doctor Space Heater, I’d never see a doctor alone again. What if someone had not been with me that day? I don’t think any woman should be alone for an appointment. Twenty minutes later, he came in and sat down.

The middle

Very briefly, I described my 5 years with RA, listing the treatments I’d tried, my symptoms, drug allergies, and lab scores.

The rheumatologist said that by looking at me he can tell I do not have “any form of arthritis.” He pulled and tugged at numerous joints producing loud cracking sounds that even Mary Khris could hear (she wears powerful digital hearing aids). I asked Katie Beth, “Did you hear that?” She said, “Yes!” And he looked at her and said, “No!”

He pulled and twisted my right fingers, wrist, and arm and both legs forcefully. I refused to wince. All of my joints are tender to touch, but that wrist has not hurt this bad for months.

He said “The only medications that you need are Advil and Tramadol. I’ll write you a prescription for Tramadol.” I said, “What does that do?” He said, “Makes your pain go away.” I asked, “Does it treat the problem though?” He said, “YES!”

The end

He said “Your joints do not hurt. You just need to relax.” He placed his hands in an inappropriate place and held them there for several seconds. When I moved away, he said to Katie Beth, “Is she always like this?” Katie Beth answered, “Only because you are incredibly rude. Let’s get out of here.”

It took a couple of minutes to get out of there. He kept insisting that I let him see my spine and asking whether I had an eating disorder. I told him that I had no idea why he was behaving this way, but we could not stay. His only employee, his wife, was staring through the doorway with a look of disbelief. I wonder how many times she’s seen this.

We give doctors a screen name on this site to protect them and us from whatever we might need to be protected from. We protect the innocent and the guilty. This one time, I wanted to print his name. I won’t do that today. Instead I’ll make a formal complaint to the state department of health. If that information becomes public, I’ll provide my readers with a link to that information.

For now, he’s Doctor Perv.

The future

We’ll move on, my girls and I. They’ll never go to a doctor alone.

Eventually, I will go to another rheumatologist. I admit it’s very hard to keep encouraging patients to seek care when the majority of the letters I receive tell negative stories of how they are treated. But we’ll continue to celebrate and promote good doctors and advances in rheumatological care. One project we’ve begun is a Recommended Doctors List to be published on the new Rheumatoid Patient Foundation website. If you know a good rheumatologist, please send us the name and contact info. (For now, you can also leave that information here as a comment on this post. The new email for the RPF will be up soon.)

Tonight I received an email with VERY good news for the RPF. We received a grant that we had applied for to help finance some initial programs. So far, I’ve spent my own money and the blog’s money to cover expenses for the RPF. This is another important step toward seeing our goals become reality. And it confirms to me again that we are going through doors that God is opening. We will not give up.

Recommended reading

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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144 thoughts on “The Appointment with Doctor Perv

  • May 20, 2011 at 3:05 pm
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    Kelly,
    No one should ever be treated that way by a medical professional. I am so sorry you had the experience you did.
    For those who live in the Washington, DC area I *highly* recommend either of these two rheumtologists who share an office:
    Dr. Joseph Laukaitis
    Dr. Susan Lacks
    2141 K Street, NW
    Suite 407
    Washington, DC 20037
    202.293.8855
    Professional and kind human beings – you can do better than these two!

    Reply
  • May 20, 2011 at 3:42 pm
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    Thank you on behalf of other RA patients for having the courage to report Dr. Perv. I wish you well. I have had only one visit with my rheumatologist, having received a diagnosis (Positive ANA and high RF factor, Anti-CCP antibodies of 165) only two weeks ago. He’s also my adult daughter’s rheumatologist who believes that she indeed has an autoimmune disorder but has had trouble identifying the particular one since her tests are coming back negative. I traveled almost three hours to see him, in hopes that my information together with hers would help him identify what’s going on with her. He believes that her numbers are just not yet showing up and is treating her. I had thought that I would transfer to a nearer rheumatologist after diagnosis, but after reading your post, I’m rethinking that. He took a careful history, told me he could tell that I was downplaying the symptoms I was experiencing (I was, out of fear that I’d be thought a hypochondriac), and decided to run the tests that did pinpoint RA. While my experience on this RA path is short, I was impressed with what I’ve seen so far with this doctor:
    Dr. Randall W. Johnson
    9201 Pinecroft Dr.
    The Woodlands, Texas
    281-297-6476

    Reply
  • May 20, 2011 at 3:51 pm
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    Kelly,
    I’m so sorry for your most unfortunate experience! Hugs to you. I’ve only seen my new rheumy once but his office has already surpassed any requirements or expectations I had. His name is Dr. Jeff Petersen, he works with Seattle Arthritis. Please add him to your recommended list. My mom does extensive research to find me good doctors- this one she found a lady that flies from Alaska to see him. I hope that you someday soon find a doctor worth treating you.

    Carly

    Reply
  • May 20, 2011 at 5:04 pm
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    Oh Kelly! That is HORRIBLE! I am so sorry you had to endure that. And I’m so glad your girls were with you. And good for them for giving you the kind of support you needed. You are right, this perv needs to be reported – and I’m so glad you are going to do that!

    Wish you lived in the Atlanta area. The group I go to is Piedmont Rheumatology Consultants. I see Dr. Hayes Wilson, who is in practice with his wife, Dr. Kimberly Wilson.

    Their website is:
    http://www.drwilson.org/

    I am so blessed to have such a good doc, and I wish that same blessing for all RAD patients. Dr. Hayes is inevitably gentle. He wants to know how many and which joints hurt. He BELIEVES me when I tell him about my symptoms – even when they are totally off-the-wall and weird. And he is willing to try anything that will help me. He’s just a good doc, a smart guy, loves his patients and his work. He SINGS as he goes from room to room! Teaches the residents who do part of their clinical with him how to check joints carefully – so as to not cause pain, how to shake hands – on the forearms, like your video.

    Sorry, I’m rhapsodizing. And I hurt for you so much, going to all the losers you have gone to! You ARE going to find as great a doc as I have. I just know it. I’m praying for you!

    Love
    Elizabeth

    Reply
  • May 20, 2011 at 5:28 pm
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    I’m so sorry you had such a horrible, unsettling experience, Kelly! I respect your integrity about your decision not to reveal Dr. Perv’s name right now. You’re a much bigger person than I would be in your shoes 🙂

    My mom’s doctor is absolutely amazing:
    Ina Opplinger, MD
    Tacoma Medical Center
    209 Martin Luther King Jr Way
    Tacoma, WA 98405
    253-596-3360

    We have Group Health and I think that may be the only HMO she works with, but hopefully someone finds this recommendation useful.

    Take care, Kelly.

    Reply
  • May 20, 2011 at 6:31 pm
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    Kelly –
    I am so sorry to hear about your horrible experience with Dr, Perv! Glad you were not alone and had the support and protection of your daughters.
    What exciting news to hear about the grant for the Foundation. It will be a wonderful resource and I would be happy to help in any way I can.
    I have been incredibly fortunate with my rheumatologists. A started with Stephen Hinkle, MD 32 yeara ago when my RA was diagnosed. What a bright, kind, compassionate man and a great doctor who believed in patient participation. But he retired earlier this year – so sad! I am now seeing one of his colleagues (at his recommendation) who seems almost like a clone – another concerned, respectful doctor. He is:
    Kurt Oelke, MD
    Rheumatic Disease Center
    Glendale, Wisconsin (near Milwaukee)
    414-351-4009

    Reply
  • May 20, 2011 at 6:33 pm
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    OMG I am so sorry! I will lift you up in my prayers tonight because that man needs a good kick in the you know what! Thank goodness you are filing a complaint against him. Bless your heart!

    Reply
  • May 20, 2011 at 6:35 pm
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    Hi there

    Kelly I am so glad I live in Australia, somehow I have had good to great rhuemys, have had terrible surgeons though.

    Just a thought, I know that sometimes docs write to each other about a patient they don’t like/believe, as horrible as it sounds, could you have been blacklisted, especially because of your website???

    Love and prayers to you, emmigrate to oz, I have a lovely lady rheumy

    Reply
  • May 20, 2011 at 7:08 pm
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    Kelly I am so sorry to hear this has happen. As a Police Officer what you descibed in your blog is a Sexual Assault and at the Least Sex Abuse. I am glad to read that you reported this, and As a friend I want to Drive down from New York and Arrest this so called Doctor myself,and maybe apply a little Police Justice on to him also. To think a person whom is put into a postion of trust would abuse it angers me to no end. I feel so luck to have found a Rheumy that I trust with my care. I wish you luck and Gods continued Blessings in this endeavor and If you need anything Please do not hesitate to ask.

    Reply
  • May 20, 2011 at 8:17 pm
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    Kelly, For you good doctor’s list:

    Dr Johnny Su
    Cleveland Clinic
    Twinsburg Medical Office
    2365 Edison Blvd, Suite 100
    Twinsburg, OH 44087

    I am seronegative – but Dr Su diagnosed and treated me. He is gentle, and he listens. He’s a GOOD doctor! We need doctors like this – and we need your list so we know where to find them! Thanks Kelly!

    Reply
  • May 20, 2011 at 9:11 pm
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    I am sorry that this is another dead end doctor for you, Kelly, but relieved that dummies like these don’t diminish your self worth. Something has got to get better soon for you! You are an inspiration to me, my dear!

    Reply
  • May 20, 2011 at 9:22 pm
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    Oh my! That is horrible….I can’t imagine and I don’t know if I could have been as collected as you! I am fortunate it seems that my pcp referred me to a rheumy who has been a good listener so far. If the office wasn’t freezing, it would be great……will post contact info later as I am having technical challenges right now,

    Reply
  • May 20, 2011 at 10:02 pm
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    QUACK!
    Any Dr. knows that Tramadol is not to be used on a long term basisfor RA.
    I have taken Tramadol for another problem that I had, related to my cancer.
    When I went for my follow up at Moffitt Cancer Center I told the Dr. that tis med. made my RA feel better. He said it was not for long term use with RA.
    Sound like he is shady, & totally unprofessional. Glad you had other people with you.

    Reply
  • May 20, 2011 at 10:40 pm
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    Kelly,so sorry you had to go through this.It makes me so angry that doctors like this are still in practice. I am so glad that you had your daughters with you. I am also glad that you are going to report him.
    Since being diagnosed to see a rheumy here in Phoenix. She is the best. So far she has taken excellent care of me and is very knowledgeable.
    Here’s her info:
    Dr.Dimpy Kapoor
    Southwest Rheumatology
    9305 W Thomas Rd Ste 455 Phoenix AZ 85037
    623-399-9010

    Reply
  • May 20, 2011 at 11:27 pm
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    Dear Kelly, I am so sorry about your office visit. I thought I had some bad experiences with doctors but nothing like that. I love my new rheumatologist and everyone that works at the Columbus Arthritis Center is wonderful. Her name is:
    Dr. Jennifer Richardson
    1211 Dublin Rd.
    Columbus, OH 43215
    614-486-5200
    Thank you for this website. It has helped me so much!

    Reply
    • May 21, 2011 at 6:55 pm
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      Thanks for this recommendation! I moved recently moved to Central OH from out of state and have not yet found a new doc.

      Reply
  • May 21, 2011 at 12:13 am
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    Oh Kelly… first off, you have every right to call the police. That is quite simply sexual assualt. Secondly, what a horrid, horrid doctor. I would love to kick him where it hurts for you.

    For anyone in Michigan, there is an AMAZING rheumy named Dr. Raza with Allegiance Rheumatology in Jackson, MI. He is the best rheumy I have ever seen and I have seen nearly ten total in three states.

    Reply
  • May 21, 2011 at 12:36 am
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    Oh Kelly….every time I read one of your horror stories I wish I could clone my doctor and ship him down to you in Florida. The last time I saw him, I told him all about RAWarrior and I think he’s probably checked you out by now. I have been going to him since diagnosed (instantly, due to claw hands that followed a several day bout with really high temps and possible Lyme’s Disease…) and, together, we have worked out my treatment. He has the know how and I ask the questions and give the info to help him pinpoint treatment. From the start, he has recommended and prescribed both holistic and pharmaceutical treatments. Last summer, after a couple of bad blood tests, I was taken off all NSAIDS and put on Prednisone, though I protested. The stuff was amazing, but I’m not happy with the 9 month outcome. It’s not that he uses the pyramid or anything, it’s just that he doesn’t believe in over treating. I’ve also been on Tramadol for eight years….joyfully, gratefully and mercifully. I know it’s not treatment, but it makes getting around a whole lot easier. Even so, I have some bad days…weeks…and a couple of months this past winter with the cold and weather crap.
    I wish you were here to make an appointment with
    Dr. David Engelbrecht in Jefferson Valley, NY.
    (I hesitate giving his other info since I haven’t
    discussed it with him.) He’s incredibly busy since he has privileges at 6 hospitals and runs a clinic at St. Barnabas Hospital in the Bronx on Wednesdays. (I like to think he does that because, when I taught in the Bronx, we talked about the abominable care people get there and how many probable RA patients I knew who were undiagnosed….he’s still amazed at how many appointments he has each week.) It’s plain that his earnings don’t go on fancy office trappings or lavish equipment….but his skill, IMHO, is beyond that, so I don’t particularly care.
    Anyway, I doubt he knows how much I like him and trust him, so I hope he reads this.
    I think of you often and hope you find the doctor you’re seeking. I had no idea there were so many creeps out there…I guess I’ve been fortunate.

    Reply
  • May 21, 2011 at 1:18 am
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    I commented in the last post that I’m not sure how great my rheumy is as far as results go since I’ve only been seeing him since July, and haven’t been to see him in months (didn’t have insurance). He was looking to move onto biologics after 3 months of MTX without feeling much result, and he had put me on a second DMARD already (that I had to discontiue after a week because of side effects). I have liked him so far, he told me it was refreshing to see a patient who was well-informed on RA, treatments, etc. He came very highly recommended to me by a friend. He is young (probably about 32 or so), very calm and compassionate. He is also board-certified which is always good.

    Dr. Anang Modi
    Queens-Long Island Medical Group
    640 Hawkins Ave
    Ronkonkoma, NY 11779
    631-737-0100

    He also practices at the Valley Stream, Hicksville, Hempstead and N. Babylon offices.

    I have also heard great things from a customer at work with Psoriatic Arthritis about another rheumy on Long Island, He said he couldn’t walk when he started seeing him and you would never know it looking at him now.

    Dr. Michael Repice
    5 Main St
    Huntington, NY 11743
    631-271-1640

    Reply
    • May 21, 2011 at 1:20 am
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      Oh, and it looks like Dr. Repice also has a sub-specialty in Pediatric Rheumatology.

      Reply
  • May 21, 2011 at 4:43 am
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    It’s so foreign to me that there are still doctors like this in the world. Reaffirms how blessed I am to have a fantastic rheumatologist, Dr. Suneil Kaput in Ottawa, ON, Canada. His wait list is long but so worth the wait.

    Reply
  • May 21, 2011 at 7:29 am
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    In the West Texas/Amarillo area, I highly recommend the doctor who (finally!) diagnosed my RA, as well as asthma.

    Dr. Constantine Saadeh
    http://www.allergyarts.com/

    He is both an allergist/immunologist and rheumatologist. His clinic has state of the art equipment and in-house lab, bone density scanning, xrays, infusion room, and portable ultrasound used to look for RA damage as well as guiding the needle for injections into joints, etc. Dr. Saadeh is extremely kind and works well with the patient to determine treatment. I remember in particular one day he drew me a little chart with various RA medication/treatment options, explaining pros/cons and letting me choose amongst them based on that knowledge. He has compassionate nurse practitioners who conduct many of the routine visits, but he is in close communication with them about test results, etc. I have met people in the infusion room who travel from NM and CO in order to keep seeing him. He has done an excellent job at pinpointing when I needed to be referred to other specialists like my retinal doc, neurologist (for apnea issues), etc. The office is a very busy one, but are always responsive when I call with questions, am sick, or want copies of results. I have met many people who have been his patients for years now for asthma, lupus, RA, and everyone speaks highly of him.

    Reply
  • May 21, 2011 at 8:05 am
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    This may have been traumatic for your family, and it may be hard to feel anything good comes out of this, but you did everything in your power to do the right thing and behave appropriately. You taught your children an incredible lesson, and everyone reading this, who knows you and respects you.
    We can all see how many things were wrong right from the start: the dirty office, the insurance sign, the staff trying to get you to feel stupid for bringing someone in with you. Now alarms will go off for the rest of us when this happens.
    The way you acted will give us all strength to do the same.
    This doctor is a joke, but I am not surprised. Did you check him out on the ratemds.com site?
    Here’s a link to the only one we had in Windsor. Note-I’m not saying anything negative, just showing you information! lol
    http://www.ratemds.com/doctor-ratings/79602/Dr-Jude-Rodrigues-Windsor-ON.html
    When I was 13 I went to a skin doctor, he always had me take my shirt off. He was 60+ and his staff always insisted I be alone, my mother waited outside. No nurse either. Yeah. One day, he leaned over and kissed me right on the lips. When I was outraged and looked about to bolt, he said “it’s your birthday today, Happy Birthday.” It was, but please don’t think you can sexually assault me. Freaking monster. I told my mother when I got outside and we never went back. I heard later from others he did it to them too. ALWAYS go in with children, don’t take no for an answer. IN FACT – if they say NO ..it’s pretty well an admission of something stinks.
    As for good doctors, I have one in Michigan who is kind and wonderful too.
    Dr. Dipti Shah
    15134 Levan Road.
    Livonia, MI

    Reply
  • May 21, 2011 at 8:36 am
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    I am so sorry you and your daughters had to experience such a horrible man! My doc is so considerate and thoughtful, she really cares. When she checks my joints for tenderness, it is with a careful practiced touch. We are always conversing and catching up personally when she does this, so when I nearly jump from the table, she knows where the sensitive spots are without using force.
    I know she is very busy, but she is in a practice with four other rheumies in Lexington, Ky.

    Arthritis Center of Lexington
    Rita Egan, MD
    330 Waller Ave. Suite 100
    Lexington, Ky. 40504
    859-254-7000

    Reply
  • May 21, 2011 at 9:04 am
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    I just posted my doc’s contact info in Lexington, Ky. I just have to add one more thing after reading some of the responses from my fellow warriors. With all the information both here and on the internet, why is it so hard to treat RA? Once you have walked in these shoes for a couple of years, you could just about treat yourself if you were allowed to write scripts and lab tests. We have access to all the information needed to diagnose and treat RA. The available meds are limited, if one doesn’t work, you try another. Some only work, like Kelly said, for six months and then their effectiveness diminishes. With a little study time, we could walk into a new rheumy’s office and recite our lab results, trends over the years, our response to different meds and combinations of meds, progression, etc… The drug companies should just make one of those sliding charts where you answer questions related to your RA and the chart tells you the most effective next step.
    Oops, I believe I am sounding a bit angry. Must be a combination of wanting to strangle Dr Perv and HURTING! Sorry! But you see where I’m going with this. Everyone on this site is intelligent and wants to participate in their own treatment plan. We could all write an updated report to present to the doc since it is so easy to forget things you need to ask. The doc reads your report and your recommendations, orders the med and/or tests, makes a copy of your report for your chart, and out the door you limp:)

    Reply
    • May 21, 2011 at 9:40 am
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      It is still a good point, Julie, even though you were a little angry.
      Point 1:
      We don’t want to treat ourselves, but we should be particpating since RA is heterogeous and only we know our whole case. We all know the doctors’ notes, IF they were read, are missing many things and often inaccurate.
      Point 2:
      It should NOT be so difficult to find someone who treats RA as you correctly noticed that it is. If the medical profession would listen to what the patients have said/written about the disease, they would know more about it. The only way this continues is that so many actually have their “fingers in their ears” as patients describe their RA. They doubt the patients and the myths and misunderstandings continue.
      One of many examples: RA affects the CA joint (vocal cords) in 83% of patients. This is confirmed by autopsies. Most patients I know have some “characteristic hoarseness of RA” YET most doctors tell patients that it’s rare. So if a patient DOES complain of it, it is not recorded in the chart because the doctor doubts the patient. If doctors don’t inform them, then most patients don’t know that it is part of their RA and do NOT even report the symptom to their docs. So then we end up with the myth continuing that it’s rare.

      Reply
  • May 21, 2011 at 9:12 am
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    I don’t know how you can stay so calm, I would have slapt this doucheb…

    Reply
  • May 21, 2011 at 9:56 am
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    I’m sorry to hear about your experience with this ass. It might be inappropriate, but we (patients) need a list of doctors to avoid with a brief description of why to avoid them.

    Reply
  • May 21, 2011 at 10:08 am
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    My mind went blank and my draw droped, then I had a fit of rage…. A want to find this doctor and somehow will my RA into him and make him feel our pain. This guy, needs jail time and lose that licence….. I am so so sorry <3 <3 Keep up the good work and find a great Rheumy sometime soon!

    Reply
  • May 21, 2011 at 10:29 am
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    There are way too many doctors like that. It’s disgusting.

    Good for you for standing up for yourself!

    Congrats on the grant, you are doing good work.

    M

    Reply
  • May 21, 2011 at 12:40 pm
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    1. Oh, my. I am so sorry, Kelly, for your having to endure(another) truly awful experience.
    2. Yay and congrats on the grant!
    3. Big thank you for all you do and the wonderful support system you’ve created.
    4. I am so blessed. I did have a brief and horrible rheumy experience – so much so that I didn’t go back/didn’t attempt to ask for another referral for several years. However, our GP is awesome, listened to me, and sent me to a wonderful doctor:
    Dr. Sunita Kammila Penmatcha, MD
    Rheumatology Associates
    3740 Utica Ridge Road
    Bettendorf, IA 52722 (The Quad-Cities area)
    Phone: (563) 359-4440
    Fax Number: (563) 359-4644
    She listens carefully, is gentle and thorough, her office staff and nurses are the best – everyone at the office is respectful and caring. And… she believes in training residents, too, thereby helping to create more understanding and better treatment. BTW, I am sero-negative. She dx’d RA on my first visit a year ago – had me on MX within 3 weeks (after required tests), and added Humira in February.

    Reply
  • May 21, 2011 at 1:15 pm
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    Kelly-So sorry that you cannot find a decent dr. Have you thought about traveling just for an initial visit or two. I live in NY and there are many wonderful Rheumatologists. I have had surgery at The Hospital for Special Surgery-they are wonderful-so many in the surrounding suburbs as well-where I am.I don’t think about how lucky I am to be surrounded by top drs.

    Reply
  • May 21, 2011 at 1:19 pm
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    Kelly, thanks for the Sarasota, FL rheumy referral. Your website is so VALUABLE to me even though I am 15 years into RA. with my Rheumy in Michigan. He is BRIEF on empathy time, but as I listen to him dictate our office visit, he describes every concern I shared and then extensive medical terminology about labs, joints, organs, inflammation,etc. followed by a TREATMENT plan. I KNOW I’ve been HEARD!! Recently he said: “The aggressive meds have kept me from deformity. After Enbrel, I am mobile with managable pain. The main goal is to “prevent organ damage and keep me alive.” whoa ;+[

    Reply
  • May 21, 2011 at 4:43 pm
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    This guy sounds like a total quack! I am so saddened for you that in the midst of your physical pain you had to endure this idiot’s implication that it’s not real. It was like that with our pediatrician and we couldn’t believe he thought our daughter looked fine as she cried in pain that he didn’t believe her. Life certainly is different today than that of our parents’ generation where they trusted doctors implicitly for all the answers. We are educated, looking for answers, not accepting that this is as good as it’s going to get. You know your own body much better than any of them and are so informed in seeking a solution that you are helping all of the rest of us out here as we figure out our own situations. Please don’t give up! Thinking of you and praying for you to find the right person.

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    • May 21, 2011 at 5:40 pm
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      Thank you so much. I know what’s real. But he not only implied I don’t have RA, he said it out loud. He said I had no swelling, and I said, well my knees are swollen on the back. Without even looking at them, he said, “No, they’re not.” I’m not being picky. I just need to have a doctor who knows what RA is.

      Reply
  • May 21, 2011 at 5:44 pm
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    Kelly,
    I also live in the Orlando area, although a little to the south. I recently found a Rheumy who is fairly new to the area. Educated at Mayo Florida. EXCELLENT. Really good. He would never, never tug on your hands (or do any perv stuff). If you are interested in his name and where his office is, shoot me an e-mail. I am newly diagnosed and I have been incredibly happy with his protocol.

    Reply
  • May 21, 2011 at 7:07 pm
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    Thanks for sharing a story that is, by turns, infuriating and inspiring.
    In my judgment, you are not only an honorable warrior but an admirable alchemist, transforming the leaden weight of invalidation and violation into the gold of inspiration and information that will likely benefit many others

    Reply
  • May 22, 2011 at 11:32 pm
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    Kelly,
    Sorry you had to go through this, especially since you’re trying to upgrade to a better Rheumatologist. If anyone deserves better, it is you, especially for the good you have done for others. This site has allowed me to know how others are coping with this disease and has given me a better understanding of why I feel the way I feel. Stay strong Kelly!

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  • May 23, 2011 at 1:19 am
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    I’ve seen many rheumy’s over the years, since dx with JRA 29 yrs ago. Interestingly, all have been women, except my current doc. Some of them were compassionate, some cold and controlling, basically the gamut of humanity.

    My current doc is great, always up on the latest meds, always open to letting me choose when to change meds or not. Never dismisses my pain. I don’t need to change for exams, and he doesn’t hurt me during the exams. Sometimes he runs late, but that is because he takes time to listen.

    Richard Neiman
    (425) 899-1664
    Kirkland, WA (East of Seattle)

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  • May 23, 2011 at 9:26 am
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    GRRRRRR!!! My heart goes out to you!! If I can come up with a sure fire way to find a great rheumie, you will be the first to know. I have been putting off my search for over a year and dread the day when the rheumie that “fired” me won’t fill my scripts. It is bound to happen at some point and I know I will be kicking myself at that point but there is a mental burnout with this disease. They wear you down over the years if you don’t have a supportive doctor or can’t locate one. These relationships remind me of an abusive spouse relationship and it should be outlawed!! Love the idea of the doctor list for the ra foundation! We need to find you a great doctor!

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  • May 24, 2011 at 9:04 pm
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    Did you not file charges with the police department immediately after it happened???

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  • May 24, 2011 at 9:50 pm
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    I am so sorry you had to go through this Kelly. After all the horrorstories I hear i wonder how some of these docs remain in practise. If you ever consider coming slightly north…about a 5 hour drive, please consider my rheumy. she is awesome. Smart, aggressive, and actually examines me every time and shares the responsibility of my care. She believes in whole body health and referes if neessary.
    She is a Fellow of the American College of Rheumatology. Her staff and nurses are great too.
    Dr. Kathy Lynn
    682 Hemlock St
    Macon, GA 31201
    478-742-0483

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  • May 25, 2011 at 10:08 am
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    Hey, that’s my hometown! But I live 600 miles away now. I also heard that there is a female Rheumy in Racine who actually has RA and is pretty good.

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  • May 26, 2011 at 12:34 pm
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    I’m sorry to hear of your rheumy troubles.. again. I went through similar experiences with my disease first reared it’s ugly head. I finally went to see a high profile rheumy at a large university hospital who through up her hands and said… you might have Fibromyalgia. At that point I gave up. It wasn’t until several years later after moving to another state that the pain and fatigue drove to me to once again search out help. I started with my PCP who surprisingly referred me to a rheumy at a competing practice even though there were two in her office.
    I got lucky.. My rheumy is awesome.. and was from the first visit. The only complaint I have is she will not prescribed pain medication. She says if I am on pain meds I will be tempted to overuse the joints which will cause damage. She gives me Flexeril and prednisone for flares.

    Here is her info:

    Dr Sona Kamat
    969 Mason Road
    Suite 160
    St. Louis, MO 63141
    (314) 996-3434

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    • May 26, 2011 at 12:48 pm
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      Thank you Gyndee.
      In reply to your doctor’s statement: I do like her logic since use can promote damage & there must be caution & balance. I agree & I’m glad to hear she says that. However, if I did had no pain meds, I would not move at all most days, since the treatments have not helped – even prednisone. Complete immobility cannot be good for us either.

      Reply
  • May 26, 2011 at 1:48 pm
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    I hate that your latest experience was so horriffic. I hope you can find a good doctor soon Kelly!
    I just found out this morning that my Rheumy’s office was completely destroyed in the Joplin MO tornado on Sunday. I hope he and his staff are alive.
    I will be looking for a new doctor now as well, because rebuilding the area could take forever and I need to go to the doctor in June.
    xoxo,
    Elizabeth

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  • May 26, 2011 at 4:47 pm
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    I can’t image going thru something like this. I, like Betsy above, go to the Dever Arthritis Clinic. I see Dr Kenneth Glassman. He has been my rheumy for over 20 years. I have changed insurance twice so that I could stay with him.

    I hope you can find someone willing to believe you and work with you.

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  • May 29, 2011 at 10:37 pm
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    Kelly I am so sorry for this happening to you or anyone else. I would never pry into your personal affairs by asking you who went with you, what did they think, etc, etc. I believe it happened to you and want to come kick some professional butt. By being a frequent reader of your blog I know you must still have refills of all your meds since you have not been wothout a Rheumy for long at all. Hoping and praying you will meet up with right Rheumy very soon. They are few and far between that is for sure.

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  • June 1, 2011 at 11:29 pm
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    OMG doesn’t start to say what I think.
    Kelly, I am so very sorry you had to go through this ~ especially because you were so hoping that you’d finally find an understanding doctor. I wish you could come up here (Ontario Canada) and see my rheumy. She’s a little arrogant at times but that is the least of my worries. She can have an ego as long as she does the right thing for me.
    Keep looking my dear ~ if anyone is destined to find the right doctor it is you. You’ve helped so many of us in innumerable ways.

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  • June 22, 2011 at 1:18 am
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    The ONLY rheum in town is a goody!

    Dr Clay McCord MD

    Sky Lakes Rheumatology
    2200 Bryant Williams Drive, Ste 2
    Klamath Falls, OR 97601
    (541) 880-2750
    Fax: (541) 880-2759

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  • July 5, 2011 at 11:20 pm
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    I have a wonderful Rheumatologist. I drive about 60 miles round-trip to see her, but am thankful for every mile I have to drive. She is extremely thorough, has a tender bedside manner and seems to have compassion that I haven’t seen in a medical professional in a long time. She encourages patients to educate themselves, and also encourages herbal and alternative treatments in addition to the conventional treatments. After so many horror stories read of rheumatologists, I feel blessed to have nailed down a good one so early…

    Sunita Chadha
    http://wnyrheumatology.com/
    1825 Maple Road, Williamsville, NY 14221
    Tel: 716-810-9292

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  • July 19, 2012 at 10:46 pm
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    What a horror story!!! The first time I went to a rheume..I was in pain from my head to my toes…could barely walk..he let a medical student access me..for all of about 15 minutes..Then she left, and he came back in and told me that I didn’t have RA, that I had fibromyalgia…!!!! He gave me elavil and klonopin and told me to take that everyday, and I would feel fine…I took the medication for one week, and I felt like I was in another world..all drugged up and still hurting like crazy..My family dr. diagnosed me with RA and has been treating me the best he can, because there are no Rheums near where I live…My knees are hurting so bad, my wrist, my hands, my shoulders, ankles and toes…my neck..I am growing weary of being in pain all the time..When will drs. really take the time to actually help us????

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  • October 1, 2012 at 6:19 pm
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    I feel somewhat guilty for being overblessed when I read these stories of difficult dx and horrible docs. The NP at my GPs office did an xray and told me I had a fracture in my finger, after 6 weeks of no improvement I went to bone doc. He did xray and said there was no evidence of fracture, but more like what RA couuld do. He did blood tests and then made an appt. with rheumatolgist for me. Only took 2 week s after bloodwork. First time I saw him I was there for 3 hours. He was pleasant and thorough. Took chest x ray along with those of my hands and feet, joint exam, and more bloodwork. I told him I had trouble with NSAIDS because of previous stomach bleeding and the less we involved my stomach the more treatment I could handle. He prescribed mtx injections, plaquenil, and 4 mg a day of folic acid. He told me there were newer drugs (biologics) that we could add later, but my insurance company required 3 mos. of failed mtx first. This was the first time I’d ever seen this man, but I’ve researched and it appears he did absolutely the best available for me that my insurance co will allow. So reading your stories I feel lucky beyond belief to have wandered into his office so soon. His name is Chris Adams and he’s in the Orthopeadic Clinic in the medical arts center in Opelika, AL

    Reply
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