Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Rheumatologist Visit

I saw my Rheumy Monday. I had missed my last appointment because he was out sick. That was in October, then my mother got sick, so I didn't get to reschedule the appointment. And anyway, Monday was the first time back since late Summer. We left off with me not knowing if I was to see a Nephrologist because of the Nephritis the Urologist found, and also with him yet to really tell me what he thinks is wrong with me, Rheumatologically wise. Monday's visit proved to be an interesting one, to say the least. Some of you might remember that I had talked to him about Doctor Mohamad Kahn, in reference to SAPHO Syndrome. That was when he told me that Dr. Kahn had been his teacher. Well, Monday, he said that he had seen Dr. Kahn at the American Rheumatological Assoc. meeting. And, while he didn't actually say it, I got the feeling that he had discussed my case with Dr. Kahn. The reason is that he seemed to take me much more seriously. And, get this, he said that I probably either have Psoriatic Arthritis or SAPHO!!! He said the two are very difficult to tell apart. I have been saying for two years now that I think I have SAPHO, and wow it feels good to finally be validated, if only partially!

So that's the up and here is the down. He had more blood tests done and another urinalysis. And his nurse called my office yesterday and said that the results were back and he wants me to go ahead and see the Nephrologist. Well, that tells me two things. The urinalysis must be pretty conclusive this time, or they would not have called me. The last thing he said was for me to call for the results later this week or next. Second, it tells me that I probably do have something to worry about with my kidneys, again because they actually called me.

Well, the specialist merry-go-round continues. Nephrologist here I come. Heck I had never even heard of a Nephrologist before this. How many of you have?

Johnny

Hi Johnny,

I have not heard of it.

Best of luck with the future diagnosis and treatment. You may be correct with the calls... only time I get them is when it is bad news. I hope we are wrong about the calls.

Take care,

Tim

Hope is only a post away with KickAS.

Hey Johnny,

Nephrologist is a common word around this household. Keep in mind there could be many reasons for your kidney problems and if you are like me you expect the very worst and hope for the best. Let me know how things go with him and if I can help with my experiences I will do what I can. I ended up having a kidney removed a few years ago and have been through the mill.

Bob



Beauty is in the eye of the beholder...Behold the beauty of Orca Art

Never heard of a Nephrologist before either. Hopefully he/she will be able to get an accurate diagnosis and a plan of control for you.

Dan

>>>>>>
We are kicking some AS*.

Well, Johnny, this is heartening news indeed. I'm so glad that you are one step closer to some answers!!

I can't remember, what's Sappho?

Good luck with the Nephrologist. I don't know what he/she does, but it sounds pretty daunting.

Many hugs,

Kat

Hi Johnny,
Good luck to you!. Nephrologists are internists who specialize in the diagnosis and treatment of diseases of the kidney and urinary system! Urologists are medical doctors who specialize in the diagnosis and treatment of diseases of the urinary systems in men and women. Urologists can prescribe medications and perform surgery.

I will be thinking about you.

Love,
Nancy

Yeah Johnny, what exactly is SAPHO?

Do your kidney problems relate to that? Is it an auto-immune disorder?

I, like Kat, have forgotten what it is or maybe I never read what it is in the first place!

I'm glad you feel like you are getting somewhere on this medical rollercoaster. It feels so good to have even a potential diagnosis!

Good luck my friend!

Hugs,
Cristina

For Kat and Christina and anyone else who may be wondering, here is a link to the description of SAPHO Syndrome from Orpanet (the orphan diseases page). I don't know if I cited it before in other threads, but to be honest, it was easier to just find the page than to try and find any old threads that might have mentioned this. Dr. Khan is cited numerous times in this paper. http://orphanet.infobiogen.fr/data/patho/GB/uk-sapho.html

The page is very technical, so it is not the easiest thing to read. So I guess the easiest way to explain SAPHO is to call it what it used to be called before the acronym was coined, and that is "Acne Arthritis." SAPHO is a combination of skin conditions and arthritis. The skin conditions are several terrible types of acne and this condition called Hidradenitis Suppuritiva (which I have) along with Palmo-Plantar Pustulosis (that is the hand and foot redness and swelling that often goes along with several types of arthritis). The arthritis is almost always a combination of Spondylitis and arthritis of the rib-cage.

Hope this helps.

Johnny

Hi Johnny!

Wow, that SAPHO link was difficult reading. Just when I thought I had gotten use to some of this medical terminology... along comes this overwhelming mass of stuff to confuse me ... my brain hurts. Though I did notice it seems full of symptoms I've heard you pondering about in the past. It must feel like a very positive direction towards focusing in on the proper dx. I wish it sounded more optimistic on effective treatment plans. I suppose that 'treating the symptoms' has a familiar ring to it at least.

I'll hope that any kidney issues will vanish when seen by the... Nephrologist!
Take care,

Btw, have you let that poor little pooch in from the yard yet? I swear I heard his wimpers from way up here!

mig

Yes, Emperor has been in every cold night. He is now pretty well adjusted to his new home, too. It helps that he is now a country dog who gets a lot of visitors. He never got too many when he was a city dog at my Mom's. I even moved Lil' Bit and she has also adjusted well to her "kitty penthouse."

Johnny