Rheumatologists - how do they perform?

[vrystaat]

I have had SS for over 20 years. I have had many problems with about 8 Rheumatologists. It took nearly 10 years to diagnose me. The leading expert in the USA is at Scripps Clinic San Diego. But he also failed to diagnose me! A lot of them strongly want the SSA and SSB tests to be positive. This is nonsense. Many patients are not positive. Other presenting conditions such as Polyneuritis, Fatigue, Polymyopathy and eye pain, are often over looked or misdiagnosed. I was called Chronic Fatigue Syndrome for a long time. What I also find is that many of them are so narrowly focused that even if a complication of their prescribed drugs occurs, they will not treat it. For example, if you develop multiple episodes of acute sinusitis whilst on Cellcept, they won't prescribe antibiotics. So a week or two later, an ENT Surgeon sees you, and by then,  you are quite quick. This has happened to me countless times. I cannot disclose my current Rheumatologist out of courtesy. There is a nationwide shortage of Rheumatologists, mainly because they are poorly paid by insurers. A fee of $67 is often all that is given. I pay my gardener about the same. Any comments?

[irish]

I have seen about 3 rheumatologists throughout the years and have given up on them as I felt like they did not ask the right questions or haven the answers to my problems. I have been chasing doctors for years and finally got referred to an immunologist who has been just great and is treating my issues.

I also have a very good neurologist plus an Internist who treats all my other issues. I spent close to 40 years doctoring and being insulted, plus having dentists who didn't get it, and I feel so lucky to have a clinic where I live who has managed to hire some good doctors who are kind and caring. They don't always know the answers but between the bunch of them someone usually comes up with some idea of what to do or who to call.

If you are getting nowhere it may be wise to go elsewhere. I know it is a pain to have to switch doctors with all the paper work, etc., but sometimes that is all we can do. It really is a marathon isn't it. Good luck. Irish

[warmwaters]

I've visited 5 rheumatologists so far, and there's the good and the bad.

First of all, I got lucky and was diagnosed quickly. I had a new PCP, and she knew there was something wrong, and just kept throwing tests at me til she found it. I was seropositive, which helped. BTW, I am no longer seropositive.

First rheumy had a lot of good recommendations. Though she knew a fair amount about Sjogren's, she didn't "believe" the extreme fatigue was part of the symptoms, and kept pressing me to exercise more, even though I felt worse after exercise. She also felt that the fatigue might be "just" depression, and felt if we could clear that up, I'd be able to function much better. After a while, I felt she just wasn't listening.

I moved on to a second rheumy, who was familiar with current research, patient, and kind. I got good care from her for a couple of years, but she moved out of the area.

My next rheumy was super credentialed, head of a university program, and seriously old school.  I only saw him once because on our initial meeting he told me a) there's nothing that can be done for Sjogren's beyond what you are doing (at the time NSAIDS, plaquenil, and prednisone), and b) Be glad you don't have lupus(!).   There were other treatments at the time, and Sjogren's had stopped me from working and doing many of the things I wanted to do in my life.  I didn't see how I should feel grateful.

4th rheumy - One of the "names" in Sjogrens care.  Thoughtful, very intellectual, very willing to match treatment to my particular set of issues. Willing to look at alternative options as well as mainstream medicine.  Only gave her up because I moved cross country.

5th rheumy - While seeing 4th rheumy, I was encourage to see a more local rheumy who could handle any emergencies/short term issues. (I lived 1 1/2 hours away from my 4th rheumy.)  She took me through a very thorough diagnostic process, lots of labs and exam, and concluded I didn't have any autoimmune issues - I had fibromyalgia. Made a big deal about my SED rate being normal and being seronegative. Couldn't explain why if it was fibro I also had dry eyes, mouth, etc. Was also unwilling to continue treatment on Sjogren's. Never went back.

So.... 2 really good rheumies, one "ok", and 2 "duds".

[monty96]

I've been through 5 since my diagnosis; even with a family history of Lupus and Scleroderma, if the blood tests come back negative, you're crazy.  I had a GREAT rheumatologist I found after watching a local news program that highlighted SJogren's; did a thorough exam, acknowledged the SJogren's diagnosis and thought there was beginning signs of Lupus even though the blood work came back negative.  He was on the other side of town and I have anxiety problems, so I started seeing someone closer to home.  MISTAKE.  If you find someone who listens and doesn't solely rely on blood work, stick with him or her.  Unfortunately, the doctor is no longer seeing patients.  I recently went through testing for dizziness & faintness and have been diagnosed with connective tissue blood vessel disease with inoperable aneuryms; even with this new information, the most recent rheumatologist decided I do not have auto immune disease since the blood work came back negative; was told it was Fibromyalgia.  Needless to say, I'm still on the hunt...it helps to know that other people are experiencing the same trouble.  I depend on my wonderful PCP for the time being.

[cccourt1942]

One of the reasons I gave up in learning why I felt tired, hurt (joints primarily), and fuzzy head is because I was told I had the disease du jour: fibromyalgia.  This was in the early 90s.  We didn't have the web yet (or I didn't).  By '93 I had the web, but really, not that much info available.  Back then there were numerous self help groups for fibro..and there were copious amounts of literature available.  It contained prophetic warnings due to the condition.  Within a year, more info available on the web revealed what I hadn't fully realized:  NO TEST FOR FIBRO was available.  It is strictly dxed by the pressure points. (this is entirely subjective) 

I decided I did NOT have a non diagnosable condition nor would I take a med which was supposed to make me FEEL better but do nothing for the condition.  I have negative feelings about the label and the treatment for fibro. 

But for you who cannot get dxes for a REAL diagnosable condition (more than one way to dx by the way) and have drs "diagnose" fibro....with NO real way to dx it???  This is crazy.  btw:  it is a condition which primarily hits women (as SjS does) and also hits around peri or full menopause. ONLY from THIS site have I learned most of the men here were dxed about the SAME age.  Curiouser and curiouser, hunh?

Ask those doctors to show you medical results for fibro (they can't) and ask them why they can't take your symptoms which are associated with SjS and allow you a dx which fits better to SjS than to Fibro?  LOTS of info on other tests for SjS other than blood. 

btw: I was diagnosed through bloodwork by a rheumy who looked at me and said he'd do the bloodwork "since you are here"....told me I "had" sicca (which I did).  His nurse was to call me to give me results---and lo and behold, he called himself.  First, he apologized.  Second he gave me the results and dx.  He apologized again.  I was still working part time: I was almost 72.  He said he hadn't seen anyone go that long without a dx.  We are ALL different. 

Hang in there----all of you.
c3

[SjoGirl]

I am on doctor number six. The first one failed to diagnose me, the second did, but was not good at finding a treatment. The third said I didn't have SjS, but something else, but still recommended Plaquenil. The fourth was a nightmare, I didn't return after the first visit. Number five has been a godsend. He's at an academic medical center and is young so I keep praying he won't leave.