As some of you might recall, I was very excited about an upcoming appt with a new rheumatologist, back in May. In have been in seclusion ever since.

My "usual" depression got much worse as a result of the visit. The rheumy was extremely nasty to me. It has been a month, and I still haven't been able to find the words that would best describe the hostile atmosphere in an otherwise innocuous exam room.

The doctor kept reprimanding me for giving her too much detail in responding to her questions and for "interrupting" her to ask questions of my own. At one point she was downright sarcastic, saying, "For the third time, let me try to explain this in a way you might understand it." (I had been trying to impress upon her how much worse I had been feeling lately, but she kept insisting that my pain perception was skewed because of the fibro and that I really wasn't in any worse shape.:mad:) I would have walked out on her at that point, except that I desperately needed her to requisition blood work and x-rays for me.

Fast forward to two days ago, when I had my follow-up appt. with The Witch. I was immediately suspicious of her because she was smiling at me while we walked from the waiting room into the exam room. Her first words to me (that is, after snapping at me to sit on the table instead of in the chair in the room) were, "Well, the results of your blood work show that you have another autoimmune disorder (me: besides Hashimoto's thyroiditis, myasthenia gravis, and vitiligo) that explains your joint pain and other symptoms--other than fibromyalgia."

Oh, I forgot to mention that I got the distinct impression during the first appt. that she doesn't believe that fibro is that serious or debilitating. In other words, she was all too quick to dismiss my complaints of pain and fatigue when she thought it was "only" fibro.:mad: But now that she thinks I have something "really" wrong with me, she's taking me seriously. Her innate rudeness still cropped up at times, but overall, the atmosperhere was far less tense.

Anyway, one of the antibody tests (SSA) for Sjogren's Syndrome was positive - 165, Ref. Range 0-99; RA factor was mildly positive - 14.8, Ref. Range 0.0-13.9; and ANA, Direct was positive - 165, Ref. Range 0-99. The Nasty One said that RF can be positive in Sjogren's.

I put the SSA and ANA results in boldface type because I am suspicious of them. How is it possible that two different tests would have the exact same result? Is it just coincidence, or was a mistake made by the lab: Perhaps one of them was 165, and the same result was punched in for the other test; or maybe neither result was 165, and the number came from who-knows-where. I should point out that nine months ago, both tests were conclusively negative (8 and 17, respectively). Could the results have changed so dramatically during such a relatively period of time? Admittedly, my symptoms have gotten much worse during the same period, but still...

I have several symptoms of SS: Dry eyes, dry mouth, joint pain, severe fatigue. But the first two could be chalked up to meds I am taking, and the latter two could easily be attributed to fibro.

I just don't know what to think. The Queen prescribed Mobic for the joint pain; I have been taking Lyrica at night and will start taking it twice a day once/if I can afford it.

Any thoughts?

So, how has everyone been? Have any of you found relief during the hot weather, or does the heat make your symptoms worse? I look forward to getting caught up on your lives!

Love,
Pat

Pat -- first of all let me say I am so sorry you are having such a horrible experience with the New Doc. It sounds like a bit of "you know nothing -- I know everything"! doesn't it?
I should tell you that I must have joined this board right around the time you were having your appointments because we have not met (on this board). Not a newbie to fibro - I was diagnosed about 23 years ago. Lots of ups and downs along the way of course, but I'm in the middle of some doctor problems too. My GP is retiring, and his "replacement" doesn't "believe in" the meds that I've been on for about 10 yrs. Also, I had who I thought was a great rheumie, so supportive, took time to listen, worked with me you know? -- until he was "removed from practise" because of some personal problems (ahem!). So I went for my 1st appt with the new rheumie and he used my body to demonstrate the tender points of fibro to a visiting "fellow" in rheumatology from Germany. :mad: I'm sure the show was impressive, but I sure didn't get anything done or answered. 2nd visit was a bit better, so I hope we can build on that.
As you said your 2nd appt was not so tense, I hope further appts and followups are better for you.
I am trying to get an update on my blood work as we speak, so I can't help you with your results at all. It does seem strange -- the two 165's - do you think maybe she was "rounding off" numbers? Were you able to actually see the results or get a copy?
I hope others reply and can help you with this situation soon.
Wishing you peace and comfort,
Paddy

Thanks for your quick reply, Paddy. It's nice to meet you!

Yes, I do have a copy of the test results (at $1.00 a page:mad:). Each of the two results is definitely 165.

I'm sorry you lost your GP and first rheumy. The circumstances surrounding the departure of the rheumy sound suspicious, so maybe it's just as well you had to find someone new. I think it was insensitive of the new one to use you as a case study of sorts at your first visit and to rush you out the door after his "demonstration".

I hope you don't have to wait much longer to get the results of your latest blood work. Do you feel as if your symptoms are getting worse, and that something else might be going on, on top of the fibro?

Take care.
Pat

There is no excuse whatsoever for that doctor's behavior, Pat. If I were you I'd write her a letter explaining exactly how rude and nasty she was and then go one step further and report her to the state board. Every state has a licensing board that renews the medical license for each doctor and if you file a complaint with them it will go in her record and come up in front of the entire review panel next time her license comes up.

Doctors should NOT be allowed to get away with that sort of behavior IMO. And this is me speaking as a doctor's daughter and someone who used to work in a medical office.

The first GYN I saw was forced into early retirement by her partners. The reason? She had fibro and couldn't work 7 days a week anymore. She just wanted to cut her office hours back and they fired her, then covered it up by saying she took early retirement.

You're absolutely right, Grapedy. Thanks for the food for thought.

The rheumatologist I went to last August was a very nice person, but she seemed dismissive of fibro, too. She didn't even mention Lyrica; I had to ask her about it. She did prescribe it for me, but she wanted me to take it only in the morning, which even my PCP said was weird. BUT, since she has a pleasant personality, I might be better off going back to her, even though it will be a little embarassing. I'm sure she's more than capable of treating my (possible;)) Sjogren's.

If I'm going to get short shrift on my fibro in either event, I might as well see a doctor who doesn't make me feel like crying.:(

Grapedy - OMG - that poor woman being "pushed out" like that by her own partners! When are people ever going to LEARN?! And it's probably a very bad business decision too - I'm sure if she is anything like a lot of us with fibro - she could provide a 7-day a week added $value to the practice in just 3 days, right? ;)
PatNJ - my tests are not done yet. I meet with my "retiring" GP on the 24th of June. At that time, I really would like to get a bunch of blood work ordered so that I can hit the ground running with the new replacement GP. And back when I saw the "new" rheumie, his letter back to my GP suggested I try Lyrica (Neurontin) (which I did) and that I was to be watched due to possibility of Lupus. But no tests were ordered (he never said a word to me about Lupus - I just learned it when I asked my GP to review the letter with me). I am going to ask to be re-referred to the rheumie (I have to make it work- pickin's are slim in this area) to talk more about Lupus and some other symptoms and to tell him I did 2 2-month trials with Lyrica and was taken off by GP because of alarming edema in hands and feet. I wd also like to get some detailed thyroid work done. It has just been so long since I've been able to work with 1 or 2 professionals and study the "whole picture" and the whole history. Oh, and I would like to know my values for Vitamins D and B.
Maybe I am being too optimistic, but I will give it a try. I am making notes - that helps me feel focussed in my appointments. I am the one who is ultimately responsible for getting answers - I just hope these docs meet me half way.
Thanks for listening!
Wishing you peace and comfort,
Paddy

Paddy, it sounds as if you have assembled a comprehensive plan of action.:) Btw, Lyrica is different from Neurontin. Both have been shown to be effective in addressing fibro symptoms, but in the U.S., so far, only Lyrica has been "officially" approved for use in treating fibro patients. A study about Neurontin and fibro was sponsored by the National Institute of Arthritis and Musculoskeletal and Skin Diseases. (The results were published in April of last year, if you want to do a little research.)

It's definitely worth getting a thorough lupus work-up... same for your thyroid.

Good luck on the 24th!

PatNJ - Oops - that's Gabapentin I think? :confused: I have done 2 trials of both, in any case. One was about 3 years ago.
Thanks,
Wishing you peace and comfort,
Paddy

PatNJ - Oops - that's Gabapentin I think? :confused: I have done 2 trials of both, in any case. One was about 3 years ago.
Thanks,
Wishing you peace and comfort,
Paddy

Gabapentin is the generic name for Neurontin, so my confusion continues.;) Have you ever taken Lyrica?

Okay let's see. Yes, I tried Lyrica about 2-3 years ago, with my GP (he is very up on fibro-care). whatever its generic name is. Did two trials of 2 months each, was taken off and gave up due to severe edema. Then, as a result of the new rheumie consult 8 months ago (after I lost my long-time rheumie), the new rheumie recommended I try Neurontin. I was told they are of the same family of drugs, originally given for peripheral neuropathy. Again, did 2 separate 2-month trials with same results both times -- edema. Plus serious dizziness (whew - was I sick!). I was soooooo desperate to get the relief I've heard others have found with either of these 2 drugs, but the doc said this reaction is too serious, and I was never to go on these (Lyrica and Neurontin) drugs again.

So, PatNJ, if I am still talking gibberish, I'm afraid it is the fibro fog hard at work, and I don't have a chance of getting it right -- at the least right now! ;)
Wishing you peace and comfort,
Paddy

No, Paddy, you did fine! I think it was my fibro fog that kept me from understanding your posts!!:o

I kept pushing the issue because I wanted to be sure you had explored the latest options out there for treating fibro. I hate to think of even one of us missing out on something that could give us some relief.:(

I'm sorry that neither Lyrica nor Neurontin worked for you. I'm in much the same boat with prednisone, having suffered from hallucinations and severe paranoia the last couple of times I took it. Prednisone is one of the first go-to drugs in treating symptoms of Sjogren's, but after my frightening experience with it, I would take it again only if it were needed to save my life.

Vowing never to speak of Lyrica or Neurontin again,;)
Pat

PatNJ - Amen !!
I have not heard of those side effects from prednisone. I have been on it 3 different times for scary emergency room type flares - and it certainly helped with me. Felt like I was 18 again! What I don't get is that it helped me when I was supposed to have fibro only, ie no inflammation. I gather that's why I am now a "Fibro-and-sero-negative-inflammatory-disease-and-maybe-Lupus" person.
Anyway, thanks for sorting out the "other drug" thing with me (don't even want to mention their names -- lol!).
Wishing you peace and comfort,
Paddy