My internist is positive I have inflammatory arthritis. I have an appointment with dermatology tomorrow, so I'll check in with you after that appointment. Anyway, my internist thinks I may have Reiter Syndrome, but added that Reiter Syndrome and PsA are essentially the same (minus skin and nail problems). They do the same damage and symptoms are similar. After reading about both and assessing how, when and what type of symptoms I have; and also the chronology, I have to say I'm leaning toward Reiter Syndrome. The thing that I question about Reiter Syndrome is my fingernail and toenail involvement.
I had a rheumy many, many years ago who also thought I might have RS. Unfortunately, her large practice closed before we got to treatment and I was left with no rheumy for more than a decade. At that time it was believed that RS was always transmitted sexually and with an STD. I did not fit that criteria at all. Causes of RS have evolved and changed through the years — one of the causes of RS is Streptococcus infection. I had strep throat right before I fell ill — my one and only strep, and the diagnosis was delayed by two weeks. Ugghh. I was put on antibiotics for it and the strep cleared up, but life as I knew it was never the same from that point forward.
I'd love to hear anything you have to say about RS vs PsA.
Well you have mixture of information, some real and some from the charlatans with the "antibiotic cure" ) long term antibiotics.
While strep may be the cause, its not usually the same strep as strep throat.... (there is A, B and Virus types of styrep) but it could be. In any event if its been 10 years its not likely to make any difference whether its Reiters, Reactive Arthritis or PsA, the treatment (at least from a Rheumatologist) will be the same. I'm sure if you look around enough you can find someone who will try the low dose antibiotic treatment (which will likley assure you a long and painful death from some MRSA or one of its relatives later in your life and make anybiologic drugs pretty risky) However without a positive HLA-B27 and some history of nasty Genito urinary infections (STD or not it effects that area) its not likley to be Reiters. There are over 200 kinds of seronegative arthritis. In the end the treatments are almost the same.
Good luck with your appointment, i hope you get some answers and more importantly some treatment that helps....
Thank you for the wealth of information! I only took the antibiotics long enough to get over strep throat and that was 29 years ago. I would never, ever ever take antibiotics long-term. I'm still officially undiagnosed at this time, but I know I'm very close. I won't worry about splitting hairs as to what seronegative arthritis I have. As you can imagine, I am in very bad condition going untreated for almost three decades. . . . It's been too easy for them to blame the patient.
In the beginning I had some very, very nasty GU infections, but urology could not figure it out. My urine samples looked completely like blood, not urine. I was even accused of tampering with my own samples. Big sigh. I still have gross blood in my urine, but I'm told it's insignificant. I know better. Anyway, lots of horribly painful GU infections without positive infection. I forgot what the docs called it. Sterile urinary infections maybe? But many times frank blood, but always hematuria. I've had decades of excruciating burning pain and so many hours sitting in a warm bathtub to count. The bathtub is the only relief I get.
Oh, and my blood cultures have been completely off the charts for strep (don't know if A, B or virus), but have been told over and over they are lab errors.
WRITE EVERYTHING DOWN and build a time line for your new appointments. Approach the docs with "I'm not sure if this is important but....." (Make sure you include all the GU occurences AND arthritis symptoms. Dunno why but docs LOVE it when you ask, but the instant you tell them "this is what is happening and this is what I (and the internet) tells me I have" it becomes their new goal in life to tell why you are wrong.......
Wonder if maybe your docs need new labs? Over and over they do the same hoping for different results? Isn't that the classical definition of insanity??
Thank you very much. I have the timeline and even labs to take to them. Don't worry. I won't take the labs or anything with me today. But if they ask at a later date I can retrieve them.
I agree with you . . . their goal is to tell you why you are wrong if you take the wrong approach.
I don't know why I'd need new labs. My CRP has been elevated on/off since 1983-84. I've spent so much money on repeat labs, high-tech tests etc. it makes me sick to my stomach.
A lot of docs don't use their noggin anymore. They try to put you into that teeny, tiny little diagnostic box they see on their computer and if you don't fit that information to a "T" then you can't possibly have x y or z. That is if they even know about x y or z. I am a Zebra. They hear my hoofbeats and they think horse. Probably true for most of us.
"Labs" is on of those words that make English so hard to learn "Which one of the Labs should I get my Labs done at? WhAAAAAt, say again.
I was referring to they keep saying its Lab error. Maybe if they keep getting errors they should look at a different lab to gets the labs....
Other examples:
The bandage was wound around the wound. The farm was used to produce produce. The dump was so full that it had to refuse more refuse. We must polish the Polish furniture. He could lead if he would get the lead out. The soldier decided to desert his dessert in the desert.
Okay, so my internist called me today. He's at a loss, so he's going backward and is suggesting I have fibromyalgia. Fibromyalgia has been ruled out over and over again. Ugh.
I am so sorry you are going through this Wandering Woman. What a drag. I will keep you in my prayers and am sending you a hug. I hope, despite confusion over what to call it, you find some relief.
Michael, you are so kind. It is a drag to go so far backward like this. I don't think my internist lends credibility to me at this point. I accept your prayers and your hug.
To anyone currently in pain: Come join me on my virtual wrap-around porch and we'll all have some hot chocolate, wrap ourselves up in quilts and chat about good things.
Your kids aren't invited unless you want them to be. A couple of very good neighbors agreed to babysit all children so we aren't distracted. My grown children know better than to bother me while I'm rocking on the porch.
Thanks for the spoons! It's getting chilly out here, but I like it. I brought out some extra blankets and a bottle of brandy. Want some? For some reason my body does not tolerate alcohol one little bit but you can have all you want!