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Comments (57)


57 Responses to “Santa, Bring Her a Rheumatologist Please”

    1. Beth G says:

      All the Docs at Arthritis and Rheumatology Clinics of Kansas (ARCK) in Wichita Kansas. I am a patient of Dr Shadi Shahouri but when he is out of the office for any reason I have seen one or other of the other Doctors in the practice and they all appear to be listening caring Doctors. For example I had an appointment for a steroid shot in my knee but a week before the appt I came down with a bad stomach virus that (naturally) triggered a major flare. When I got into the the office I was hurting in every joint in my body Dr Shahouri did not mess around, did not “do labs” or mess with x rays he took my word for the level of pain I was in and gave me a “whole body” shot. Told me if the level of pain stayed high not to wait fro my infusion appointment but to come back and see him immediately and I would have my infusion early this time

    2. Tom Tohill says:

      Whenever I read stories Like this it reminds me how lucky I am to have a Great Rheumatologist, She is great with her patients and “listens” to what you have to say. She is part of Stony Brook University Hospital. Ive been with her for the better part of three years now.
      Dr Naureen Mirza
      26 Research Way
      East Setauket, NY 11733
      (631) 444-0580

    3. Shannon says:

      My biggie is a doc who is willing to take time and not rush me through. Granted, sometimes that means mine is running behind schedule if he takes “too long” with a previous patient, but it’s worth it if that means he’s willing to take extra time with me when I need that.

      Also, a doc who is willing to see RA as part of my life but not the defining factor. When my husband and I were trying to decide whether or not to begin one kind of treatment or continue trying to get pregnant, my rheum said, “Just live your life like you would if you didn’t have RA. We want to cater treatment to your life, not dictate your life by treatments.” As such, he positions himself as a partner with me in making health choices not as the one who makes all the decisions. I know that my current treatment is different from that of a friend of mine who sees him, even though she and I have a lot in common as far as disease onset/progression/etc. go, because he doesn’t just decide if A then B for all patients.

    4. Heidi D says:

      Dr. Thomas Osborn from Mayo Clinic, Rochester is an awesome Rheumy. He diagnosed me after I had so much difficulty getting a dx from others, as the other docs wanted me to wait until my x-rays showed damage and/or until I had massive swelling to make the official dx. Dr. O said “it walks like a duck, it quacks like a duck, I have no problem calling it a duck! Why wait until you have irreversible joint damage just to prove a point?!” And for the record, I never have shown much for swelling and damage – but I attribute the lack of damage to Dr. O jumping on it so quickly before the RA got a damage-causing foothold. Love Dr. Osborn – and so does my stepmom, who sees him for her lupus.

    5. I see Dr. Anang Modi with Queens-Long Island Medical Group. Here is the information for my local office, but he also practices out of Valley Stream, Hempstead, Hicksville and North Babylon.

      Dr. Anang Modi
      640 Hawkins Ave
      Ronkonkoma, NY 11779
      (631) 737-0100

    6. Sheila Dennis Toby says:

      I feel as though I have a great Rheumatologist.
      Dr. Ed Reardon
      1050 Warwick Ave
      Warwick, RI 002888

      He also has goes to E. Greenwhich, RI once a week and Middletwon, RI twice a month.

      Easily accessable. Will have someone in office contact you in a timely manner. He has been a Rheumatologist for years now. He keeps current with new biologics, listens when medications aren’t well for you. Good beside manner. Easy to talk to, down to earth.

    7. Joni Theis says:

      My RA doctor is very fantastic! He listens & is up on the latest! I would highly recommend him!
      Dr. William W. Mullins, MD
      10215 Fernwood Road, Suite 303
      Bethesda, Maryland 20817
      301-493-2500

    8. madison says:

      I had replied to a previous post with similar topic that Dr Atcheson in Reno NV was a good rheumatologist. He may be good but I would stay away from his office.

      I made the mistake of filing for intermittent leave FMLA, and my HR department has been making my life miserable, with the outcome being that I can not use any leave without them calling the rheumatologist. I had been using my leave for flares, counseling and physical therapy, all reasonable reasons I had thought. So unless I am physically in the doctor’s office, I can’t use the leave, and when I called ill last week, rather than suggest I come in for a checkup so they could track what was going on, the nurse just yelled at me over the phone.

      This is the same nurse that never records which joints are bothering me and told me on my last visit that she was a mom and worked two jobs and that I really should be able to handle it all, too. (I’m not sure that she has RA).

      The dr sticks his head in the room every time I’ve been there, but I’ve never been able to actually have an appointment with him.

      The added bonus is that I received a certified letter from the rheumatologist yesterday, so I believe they are firing me (it can’t be that I owe them money; I’ve already hit my out of pocket max this year and everything is being paid at 100%). I was setting up an appointment for a second opinion, so I guess its not all bad; I will just have to wait six weeks for any more treatment.

      • Rebecca Rice-Beedle says:

        I don’t think your HR department has the right to cal your Doc. everytime you use your leave. I have an FMLA leave too. All I do is send a calendor to them at the end of each month with the hours I used for time off. I believe your medical care is yours alone, and after the paper work is done, they don’t have the right to contact your Doctor. HIPPA laws protect you, and they can’t give out the info. Call the labor board of your state, or look into your leave paperwork deeper. I know it’s a federal law to protect you. Your company may be crossing some lines here.

    9. Julie Stine says:

      I have been blessed with a great reumatologist. All of the criteria that was listed in this article is being met by him. I was diagnosed 5 years ago but went to dr. After dr. Before he accurately diagnosed me. I am sure I may have had RA for a few years before finally being diagnosed. We moved a couple of years ago and I still make the drive to this Dr. As I know how lucky I am to have found him. His name is Rui Cerejo and he has several offices in Palm Beach County, Florida. Best of luck and blessings to all who are searching.

    10. Lene says:

      I want someone who knows that quality of life means as much as tests and physical exams. Who’ll ask how well I’m able to live my life and how much my RA interferes in it.

    11. Julie Stine says:

      I also forgot to add that by the time I was diagnosed I was showing bone erosion in both hands on an MRI he had ordered after seeing abnormalities in the xrays HE ordered. All the othe othe dr. I went to before him were relying on blood work alone to make a diagnosis.

    12. Ronda says:

      Kelly, I sure hope you can find the good rheum doc you deserve. That is not too much to ask, but why does it seem to be? We all should expect no less than a doc who listens to us and most importantly, respects our word. We can then reciprocate that respect and feel confident in taking their professional advice. These are the basics of how humans react with one another and have successful relationships! Why would we accept anything less than that??
      A doctor should not be threatened by a patients knowledge but appreciate it instead. The “Doctor Gods” out there that do not, need to realize they are antiquated and will not pass the test with the well informed patient of today.
      My biggest sorrow is for the patient that is not well informed, and has a Doc who misleads them and they blindly follow. For example, when a Doc calls an RA patient’s joint pain, fibromyalgia. This patient goes home confused, doubting their own judgment, and feeling bad about another diagnosis. Most sadly though, they have untreated inflammation and are in danger of permanent damage.

      • Ronda, I am the poster child for that patient who gets sloughed off with fibromyalgia, OA and here’s my favorite, Depression — from a woman rheumatologist, no less. Over 5 years time she never showed me one lab report, X-ray or chart notes. I had to pay for lab report copies last year. It took me researching RA after our last appointment when she said that “you may have RA” to realize my SED & CRP rates have been elevated for over 5 years. So on my wish list is a rheumatologist who gives you copies of lab reports, explains them, and pays attention to what you tell them. Mine did not, and I’m already showing signs of permanent damage in my hands, wrists and feet. It’s very disheartening.

        • MaryLynn, I get letters like your comment all the time. We do need change. All of your requests are perfectly reasonable.
          The 5 years part is what is so disheartening. This happens so often while the profession preaches early treatment. How do you get treated without diagnosis?
          I’m so sorry about your hands. I hope you get whatever treatment you need for them.
          I’ve gotten in the habit of getting all lab reports directly from the lab each time, but if your doc does your blood draw, you’d still have to deal w/them.

    13. Karen says:

      Nancy Scheinhost and Amber Mick, Bryan, Texas

    14. I have a wonderful rheumatologist who listens and treats based on what I tell her. She does all the blood work but doesn’t just use that. She’s told me before that they don’t have a pain test — only I can tell her what’s hurting and how much. She treats me as a partner in my treatment. Her name is Talat Kheshgi, M.D., and she’s with Rheumatology Associates in Dallas. (She also has an office in Plano, Texas). I highly recommend her!

    15. Becky says:

      Please, I am looking for one in the Little Rock, Arkansas area. One I have/had YELLED at me because I went to my family phys. over the cramps/spasms, after he told me for 2 yrs. he did not know what it was but it was not my RA that the RA was good. He still has me on methatrx and predisone just like I was when I started 4 years ago. Help is needed here please.

      • sorry that happened Becky. Hope you find someone who will behave professionally!

        Can I ask whether your cramping is treated now? What did the gp do for you? My rheum doc admitted that it was RA, but said nothing helps much. I know that some RA patients do take muscle relaxers. I have the cramping in feet and hands – ouch. Where is yours?

        • Kit says:

          Hi both, I just wanted to say that I used to get terrible muscle cramping and the doc gave me baclofen to take which really helps. Maybe worth getting your vitamin levels checked too – sometimes a B group deficiency can make it worse. Hope that helps, Kit.

        • Becky says:

          Kelly~The cramping I have is in my hands and feet. I have found if I stand on a cool floor barefoot it helps my feet and putting my hands under cool running water helps along with rubbing. The drawing and disfiguring i have during these cramps are diffently a big ouchhhh My GP sent me to check for carple tunnel, it was not but they did find out part of the problem is that I have what they use to call Bakers Thumbs. My thumb joints in the X-Ray that they are off the bottom ball joint about half way and if it continues surgery isnin the future. I did go to a new Rummy Dr. But I am not too sure he is the one I will stay with. I just can not go back tongue childish one I had. So if any one has suggestions for a good one in my area I would appreciate it. Thank you. In reference to vitamins, they have been checking these for 4 years and it all seems to be fine. I do appreciate the suggestion though. Thank you.

    16. Rebecca Rice-Beedle says:

      After reading horror stories from so many patients here, I know I lucked out when I found my team of Doc’s in AZ. I asked a friend of mine, who was diagnosed with RA many years ago, who she would recommend, and I was directed to a wonderful team of female Rheumatologist in Glendale . I go to Arizona Arthritus and Rheumatology. My primary Doc is Dr. JaJoo. She has 2 other gals who work wth her patients. These ladies are younger, dedicated to every detail of your concerns, and have treated me with dignity and respect from the 1st day I started seeing them. The entire staff at this office is kind and sympathetic to thier patients. The keep up to date on the latest drugs, and are very much into the research needed to find out the “whys” of RA. I feel safe and cared for when I am there.

      • Quiche says:

        I used to go to Dr. Starr at this practice and he was awful. Accused me of exaggerating symptoms, then when I had stomach problems after taking Plaquenil, told me they were pure coincidence, that I was being “dramatic and ridiculous.” At my last appointment, I waited in an examining room for over 45 minutes before walking over to his office to find him eating his lunch. After being yelled at for “barging in on him,” I found another practice.

    17. mlillich says:

      I have a GREAT Rhumy

      Dr. stewart Segal
      215 Pesetas Lane
      Santa Barbara, CA 93110

      he is amazing he listens he treats the symptoms not the tests and the most amazing thing is if you call the office for a question HE the DOCTOR will personally call you back! he is very kind and his staff is amazing! its a 1 1/2 -2 hour drive for me to go to him but it is SOOOOOOO worth it! he was the first rhumy to listen to me i had been to 4 others who basicly told me they did not know what was wrong with me or that it was all in my head cause my labs were normal but Dr. Stewart took X-rays and MRI’s and then treated the symptoms, I almost cried when he told me he belived that i had RA.

      • Emily says:

        You said you an hour, hour and half away from Santa Barbara and that’s where your Dr. is. If you need one who is SFV, Dr. Eileen Schwartz is mine. She is located in Burbank. I lOVE LOVE LOVE her practice. She has saved my life! Her staff has made sure I’ve gotten my meds in time. Both when I was on Enbrel and now that I am on Rituxin. They take care of any hiccups with any payments with the hospitals and have all around made my life livable.

    18. Kit says:

      Hi Kelly,

      I’d like to add one to the list. I think a good rheummy should look at the treatment options in the context of our lives and what we want to achieve. My rheummy is great at saying ‘what is going on in your life at the moment’ and then tailoring medication and support to fit with that.

      Kit

    19. MaryK says:

      I had a good rheumatologist. Then her husband got in trouble for not paying taxes and they moved. Her office staff was crap but she was good.
      Now I have a decent rheumy. Bedside manner is lacking. But he does listen, accept my input, and gives me access to the medications I need. He does not poo poo my pain but treats it, which I appreciate.
      On the other hand I haven’t had x-rays done since 2006. He does say that my joints “look good” but how does he know really if he’s not looking at the bones? I’m going to ask him if we might maybe need to have another round done since it’s been five years now. I dunno. How often do y’all get x-rays?

      • chel says:

        Once we knew that I had joint damage we didn’t do more x-rays except to test bone density after prolonged use of prednisone. Since my swelling and pain already pointed to an active disease process there didn’t seem to be much point.

    20. Jackie says:

      Still looking for the right Rheumatologist. I’ve had one since 12/10, and while she was rather “meh”, I just wanted to get started on meds and find some kind of baseline treatment before changing doctors. I’d like a Rheumy that will work WITH my GP and communicate. I don’t want to be shortchanged on my treatment or common courtesy because I am on Medicaid—I want to at least be offered the same course of treatment as anyone else. I don’t want to be yelled at when I give myself my first Humira shot alone in the office, withdraw too early and dribble some medication down my leg; I already know that the samples are worth $1000 each. I’d like to have all of my symptoms taken seriously, even the really odd ones like mysterious rashes, spasms, or pains. I’d like a Rheumy with some kind of bedside manner—who won’t give me a “deer in headlights” look when I ask questions. I did just find out via my Rheumatologist’s assistant that she’s moving out of state in a few months—I guess I should begin to search in earnest.

      • Jackie, none of your wants seem to odd to me. Wouldn’t it be wonderful if we could explain all of our symptoms without any “looks”? It’s not the medicaid – I’ve never had a specialist communicate with my GP – ever.

        By the way, I’ve seen Humira pens misfire at times and usually the company replaces them with a smile. My first rheum doc (Kind but Clueless) was understanding when that happened to me and handed me another pen to take with me. The way you were treated was wrong.

        • chel says:

          My GP and rheumy communicate regularly. The GP often calls the rheumatologist’s office to check drug interactions before prescribing medication. They also share blood test results to decrease duplicate testing. I really am surprised that’s not the norm. The GP also played intermediary between my rheumy and a neurologist when a side effect of Enbrel caused nerve damage. I guess I really am lucky.

    21. Mellonie says:

      I am also lucky to have a great rheumatologist who after years of suffering with symptoms and nobody finding anything wrong and being treated like a hypochondriac found out that I have not just rheumatoid arthritis but fibromyalgia as well. My other family drs tested for so many thing but couldn’t ever find anything because I test negative for the rheumatoid factor. I am diagnosed seronegative rheumatoid arthritis which makes it very difficult to find the right treatments. My advice to anybody looking fr a rheumatologist is to contact the american college of rheumatology they are on facebook as well. The American College of Rheumatology is also a great sourse of information.

    22. Robert says:

      For 12 years I have had the same Rheum Doc, however for the past 2 years he has become semi-retired and I have gravitated to his Nurse Practitioner.(NP) As I have been on Orencia and have had only a few flares, I didn’t mind being seen by the NP every 3 months. About 3 months ago I started having a serious flare and discussed with the NP the possibility that the Orencia had outlived its usfulness. She recommended waiting until the next visit to make a change of meds. During that time my pain worstened and I decided that it might not be best to have a NP prescribe my RA meds so I made an appointment with my RA Doc. As I could not see him for 3 more weeks, my pain worstened. RA Doc then put me on Enbrel and I am feeling better, although I am getting chest colds/virus. Is it common for most of you to see an NP?

    23. Young Wife says:

      We found an excellent rheumatologist in New Jersey. I was sad we only had one appointment with her.

      Humaria Hussain, MD 4 Greentree Ctr, Suite 104
      13,000 Lincoln Dr. West
      Marlton, NJ 08053

    24. Eugenie says:

      I was only diagnosed about 3 weeks ago, so this is all incredibly new, but I just ADORE my Rheumatologist. Her name is Mariko Ishimori at Cedars-Sinai in Los Angeles. She’s incredibly thorough, compassionate, easy to talk to, responsive, etc. I’ve seen a lot of doctors for a lot of difficulties over the years, and she’s the tops. Having read so many unfortunate stories, I’m so grateful that I was delivered into her hands.

    25. Susan says:

      John Botson, M.D. in Anchorage AK is awesome. I have utmost confidence in him and he treats with compassion and care. His staff is amazing and returns calls promptly, calls with lab results, etc.

    26. Catherine says:

      Newly diagnosed May 31,2011. What a long journey. As a healthcare professional, I can only imagine how difficult it can be to get answers.
      I have my ENT to thank for discovering my RA. I researched rheumatologists in the area and have not been sorry with my choice. He fits both our wish lists:
      Encourages his patients participation in their care, how we feel we are doing, how we feel our treatment is progressing, and plan strategies and outcomes together so we are on the same page.
      Performs joint examinations and accurately records medical history.
      Uses suitable tests for monitoring disease progression and to help insure safety with prescriptions.
      Stays up to date on current tests, treatments, and research.
      Does not try to use rheum factor lab tests or CRP the way endocrinologists use blood glucose tests, but asks patients about disease activity.
      Will fairly communicate with patients on an adult level without any type of abuse.
      Dr. James Roberson 866-767-1682
      Education:
      B.S. Wesleyan University, 1984
      M.D. Howard University College of Medicine, 1988
      Internal Medicine/Pediatric Residency, Albert Einstein Medical Center
      Fellowship Rheumatology, Washington Hospital Center
      Licenses:
      Maryland, Virginia, Washington DC
      Board Certified in Rheumatology and Internal Medicine
      Achievements & Associations:
      Section Chief, Director of Rheumatology Education, Providence Hospital
      Vice Chairman, Dept. of Medicine, Providence Hospital, 2006-2008
      Asst. Clinical Professor of Medicine, Howard University Hospital
      American College of Rheumatology, Member
      Washingtonian Magazine “Top Doctors” Recognition, 2008, 2005, 2002
      Physician of the Year 2006, NANBPW
      Hospital Affiliations:
      Southern Maryland Hospital Center, Clinton, MD
      Washington Hospital Center
      Providence Hospital
      Howard University Hospital

    27. Marilyn says:

      I would like my rheumatologist to be observant, one who listens to his/her patients, and who has enough humility to allow a sense of humor. I would hope that person is up-to-date on labwork andit’s relevance to RA, who does not respond with rudeness and dismissal when they feel frustrated in dealing with patient’s pain, and their lack of ability to function well. I want a rheumatlolgist who will take my hand in greeting, but who understands enough about RA to take it gently, this is not a “who has the strongest handshake contest” after all. I grew up appreciating the significance of a firm handshake, but some really get carried away!
      Last, but not least, I would hope for one who keeps accurate medical records written in the correct chart. Opening records in which my age is listed as 10 years older than I really am makes me wonder what other information can be trusted.

    28. Pauline Piazza says:

      I go to Thomas Lafferty in Ocala, Fl and find him to be excellent! He calls you back himself when you call with a question and when he has any test results. He is kind and compassionate and spends considerable time with you on each visit. He will answer any and all questions without rushing you out. My only disappointment was that he didn’t know about this fantastic website!

    29. Sophie says:

      Dr. Joseph Laukaitis in Washington, D.C. is an excellent rheumatologist who listens and cares about his patients well-being. A colleague of mine sees his partner, Dr. Susan Lacks for fibromyalgia and also speaks very highly of her. Neither accept insurance but will submit claims to your insurance. Both are worth the money! The office staff are highly professional and personal too.

    30. PJ says:

      Dr. Michael Weinblatt, Brigham and Women’s Hospital, Boston, MA. He fits all your criteria and more. The first time I saw him about my test results (rheumatoid factor, Anti-CCP, etc.). He explained them and then said “I don’t treat the numbers, I treat the patient.” Patients fly in from all over the country to see him. My advice to any RA patient: if you can get to Brigham and Women’s Arthritis Center, do it! All care is coordinated–rheumatology, podiatry, surgery, etc. and there is lots of access to clinical trials.

    31. dldg says:

      I guess I’m just happy to have a Rheumy at all. In the area that I live there is a shortage of Docs, and esp.rheumatologists. The doc I had moved away and I played heck getting into another clinic. When I did, they didn’t take me seriously because I don’t have RA factor and had just quit Enbrel (infections!) so I wasn’t doing too badly. It has taken them about 3 years to finally take me seriously, but even so, it’s such a busy clinic and there are so many patients (some drive 2-3 hrs.) that most visits are fast and with the PA. Oh well, at least I receive my meds, am treating as an adult, and no one yells at me.

      • Three years? How sad to have that time wasted because they didn’t take you “seriously.” Many of us have been there and while I’m very glad you have care, I can’t help but wish that it was better than “Oh well, at least I receive my meds, am treating as an adult, and no one yells at me.” What a measure. I had the same standard as that for my last rheum doc: I was so very glad to be treated at all without being dismissed as not looking sick enough. It didn’t matter at all to me that the doc did not “care” – until asking 1 question was enough to get me dismissed. I guess if the doc had “cared,” questions would be acceptable. It took me a long time to figure that out.

        Hopefully, the Rheumatoid Patient Foundation will make an impact over the next few years so this will all improve.

    32. dldg says:

      Kelly, we can all hope the Foundation will help. I also hope more young people go into Rheumatology, there’s such a shortage of not just good rheumys but any rheumys! Wouldn’t it be a wonderful thing to have bright, informed, young doctors starting a Practice armed with all the latest and best info and actually willing to UNDERSTAND that RA isn’t “typical”, that it runs differently in each of us. I guess that’s why you started this site and informing us about the Foundation! Finally! A voice for US!

    33. Tami says:

      I have to wait 6 more months to even see a Rheumy and I’m afraid I’ll wait this long to only find out I don’t like him. I would be willing to travel. After tax season I will do more investigating to see what options I might have, if any!

    34. Courtney says:

      I have a fabulous rheumy in Louisville at the Kentuckiana Center for Better Bome and Joint Health, Rachel Wate NP. They’re at 100 E. Liberty #700. She consults with Dr. Rachel Chase on my case as well, and they’re both amazing. It’s taken 5 years and a primary care change (after he decided I was imagining my symptoms and gave me a prescription for an anti-depressant), but they’re working hard to find a medication combination that works and making sure I know I’m not crazy and they’re there when I need them. Still nowhere near where I want to be, but I know they’re working hard for me, and I can’t express how glad I am to have found this site to go along with it. It definitely helps me get through my rougher days to know that I’m not alone, even though I feel like it most days.

    35. parker4848 says:

      I am looking for a new RA Dr. Does anyone recommend anyone near Burlington VT or Syracuse NY? I live in upstate NY so it is a 3 hour drive to any good DR.!!! Thanks for your anticipated help!

    36. Ann says:

      Just to stress your comment. Dr Botson is the best rheumatologist in Alaska. I have seen the other two in Anchorage and they both need to retire, especially DR A. Dr Botson and his staff are well educated and encourage their patients to learn about their disease and ask questions. They are all very caring and call back promptly .

    37. Ann says:

      A very good Rheumatologist in the Pittsburgh, PA/Cranberry area is Dr Betsy Shook. My first appointment she greeted me with a syringe and solumedrol in her coat pocket because she said I sounded in so much pain when calling for an appointment. She and her staff are polite and listen. They document what you say and I have never felt that I was foolish or ignorant. Dr shook looks you in the eye, shakes hands gently, does all the joint exams and even asks about other things going on in your life. She orders labs frequently but, doesn’t use only them for your treatment. Calls are returned quickly. Oh, and she talks to my husband when he comes with me. I really can’t say enough good things about her and her staff, even though I have tried :)

    38. Tami says:

      I just wrote about how disapponting my last visit was!

    39. Pam says:

      21 yrs ago I needed a cane and pain meds when pregnant with my second child due to severe pain in my left hip. 5 children and about ten yrs later my pain was really bad all over. I went to three different rheum docs here, after blood work from GP confirmed RA. They all were the typical bad experience of not listening and I couldn’t possibly have as much pain as I described. I slogged on, so starting about ten yrs ago my GP would prescribe mild meds but nothing that would completely get rid of the pain. I had one MRI on my back but still GP would not give stronger meds even tho scan showed problems. I went to a pain doc who accused me of everything but being a child of God, wanted to do facet injections without further diagnostic tests. That was my last straw with him. I went back to GP continuing meds she had given me. It wasn’t until I was really decided to take a more assertive approach that I began to get answers. I firmly insisted on a pelvic X-ray, even tho left hip is major source of pain, never had any diagnostics on it. She ordered an X-ray which led to a nuclear bone scan to rule out Padget’s Disease because my pelvis has a Swiss cheesey appearance. You know how your pelvis is tender when you’re pregnant? Mine still feels like that and my baby is 11. The nuclear scan was the God send. When my GP was reading my results, at one point she said ‘What! You even have arthritis in your ribs’! I’m like…. Well do tell! I’ve only been saying for 4 yrs ( at that time) that I can’t sleep because it hurts my ribs when I lie down. She goes to my church and known each other for a long time so I know she felt badly to find out my results from that scan but could she just have listened and taken me seriously enough to investigate thoroughly? That is number 1 on my list of a good doc. I see Dr Shah in Jacksonville Florida. He is absolutely wonderful because he listens and acts on what I tell him. He is a pain doc , well trained in other areas as well, and familiar with the difficulty I had with some of the rheumy docs here. I have several meds, he doesn’t over medicate, but I literally cried at one of my first few appointments and thanked him for listening and ordering tests for my complaints. I think I would go into a depression if I had to find a new doc. I do take muscle relaxers for spasm and cramping. I have a time release med and another med for breakthrough pain, inflammation med, and another one for nerve pain. I hope I haven’t overstepped by writing all this. I thought it may be helpful since I’ve never posted anything here.
      Take care everyone! Pam

      • Thank you for sharing, Pam. Many of your experiences confirm what others have said, and they will be glad to know they aren’t alone either. I’m glad you’re getting better care – it’s so hard like you said, trying to find a new dr can be hard on you, but it’s worth it when you do find one who listens.

    40. Janice says:

      I’ve been to a Rheumatologist, who is supposed to be the best (according to my insurance company) in my area, twice and both times he seemed very excited to help me, until he realized my symptoms aren’t on his little checklist and my levels are “only slightly out of range” and then suddenly he’s ready to give me the brush off and tell me he thinks it’s some other form of arthritis but won’t tell me the possibilities. If it wasn’t for my own research, and this website, I’d truly believe I’m out of my mind (and some days I have to wonder if it’s not all in my head after all). However, my hubby started researching it and then told me “you’re in pain, we know what it is, we just need to find the right doctor to see it.” As I’m a firm believer of “if it walks like a duck…” I’d love to find a Rheumy who looks at the whole disease and not just a checklist of what is considered “normal”. Is it bad to wish for an official diagnosis, if only so I can say that we finally found the answer? So if anyone know of a good Rheumy anywhere in or around Tulsa, Oklahoma, please let me know.

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