Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group doctor dilemma

I've seen a sports medicine doctor on and off for the last year and a half for help with my joint issues. This doc has branched out a bit from strict sports med stuff and works with joint and movement problems in general.

I hadn't seen him in several months, so when I gave him an update at the last visit, I told him I'd recently been diagnosed with Undifferentiated Spondyloarthopy, which explained for me the seemingly bizarre symptoms I had been reporting for the last couple of years. Since he had never heard of it, I gave him a brief explanation. He was quite dismissive of the diagnosis, saying, "With all due respect, Karen, that's a rather eclectic diagnosis and I don't think you have that." By that, I understood him to mean that it was some far-out diagnosis that some unqualified doctor had given me or I had found on the internet somewhere.

When I saw the rheumy last week, I asked him if Undif Spondy is a well-accepted diagnosis in rheumatological circles and he told me it is.

In some form, I'd like to go back to the sports med doc and suggest he update his knowledge. He's a good guy, not terribly arrogant or anything like that. I don't have plans to see him again as a patient, though, so I won't get an opportunity to tell him in that context.

Does anyone have any suggestions? Have others done this and how has it worked out? I could send him an email with a link to a good article on US or write a letter. I want the tone to be gentle and respectful, but I think he really needs to know about this.

Any ideas?

Karen

Karen the lioness, aloha

undif spond...is yes a well-known catch-all for any preAS person...some doctors wait for specific spinal detioration
to happen before saying 'AS'...

it's not a common diagnosis because it's not a disease many doctors see a lot of; my old primary care doctor
said to me that in 35 years of practice he'd only seen two cases.

' since he'd never heard of it' well...well...well
this is a guy who will dismiss those things of which he has no knowledge...he could have taken two minutes to look it up.

i had a long-duration relationship with physical therapy...my therapist knew what AS was and she was only 24 with
a masters degree and not even an MD...she also was the only one amongst five doctors to discover the scoliosis too.

dismissive doctors have a bad attitude about doing their own homework...there is a great pamphlet published
by the Arthritis Society...they'll mail you a free copy...you can mail it to him...you got's to do the work for him.
best of luck
aB

Hi Karen,
I print out things that my family doctor doesn't specialize in, eg rheumatology and cardiology, then I give it to him to read at our next appointment. He is always interested in knowing what's going on with me, since he doesn't know offhand. I always give it to him in person so we can talk about it though. I see you said you don't have plans on seeing him anymore, so it looks like it would be a little hard to present him with some info in a friendlier way, such as talking with him in person. It sounds to me like your sports medicine doctor would appreciate the info though, especially since he has been branching out.
Take care,
James.

aloha, aB,
The medicos keep going around and around as to whether Undif Spond is pre-AS or an animal species in its own right.
An MRI showed no evidence of sacroilitis for me, which points more toward Undif Spondy, though it could be early AS.

Yup, this guy should take two minutes to look it up. Since he thinks I have "Loose Connective Tissue Disorder", I'll bet he's not about to look up AS himself. The LCTD is an absurd diagnosis for me, because every doctor, PT and chiropractor who has ever examined me has noted how tight I am.

I think I'll send the guy this link: http://www.emedicine.com/med/topic2700.htm and hope he'll actually look at it. It's an excellent article on AS and Undif Spondy written by and for medical professionals. I've seen this doc more than 15 times and he's usually pretty open-minded, but sure wasn't at the last visit. I think he'll actually look at the link.

When I last saw my family doc, she admitted to knowing nothing about Undif Spondy and said she had never seen a female with AS. Boy, did I enlighten her! It was a really fun visit, because I lectured her on AS and Undif Spondy and its manifestations in woman, the evidence for Kleb and why the NSD works. She sat there, listening intently, actually taking notes on her laptop while I talked. A couple of times, she asked for clarification on a particular point and I provided her with it. On the way out, she said to me, "You are really good at this, Karen! Do you want to research any more diseases for me?" I think she should have paid me for that visit rather than the other way around.

I saw a PT for seven months last year. She was in many ways quite good. She recognized and diagnosed all of my biomechanical dysfunction, loosened key tight joints of mine and taught me how to walk using my muscles correctly. At the end, I told her I was diagnosed with Undif Spondy/AS and she was shocked. She said, "Every person with AS I've ever seen is bent over like this," and she hunched over, demonstrating kyphosis. I told her she had only seen males and only late-stage. I should give her the link also.

Why am I and my insurance company paying all of these people if I gots to do all the work?

Karen

Ha, so true. It's all "hands off for you, I'll do the dx'ing around here" but when you do where's the credit? I hear you.

Karen,

I agree with Ben.

I don't really care for a Dr. that will just bowl over another Drs. diagnosis or dismiss it just. because he is not knowledgable in it.

I doubt that it would do any good, but I am more of a spitfire when it comes to things like this...I would probly type out infor from here, any info on like Google you could find and right him a nice letter letting him know why you will not be back.

I don't know why alot of Drs. think they have to treat us like we are stupid, or well I am the Dr. here....I am way past that.

Between dealing with as many as 20 Drs. for 8 years with my Mom, many Drs. for me, Bill and my kids, I research, keep records of EVERY illness, EVERY flair, what meds were given how they worked or didnt work....so when I go into a Dr. my conversation might sound like this: we will say Ethan I think has strep.

I will go in and give his Dr a complete rundown of like the last 24 to 48 hours, if he has had a fever and the highest it has been, his eating habits or lack of them, what if any meds like tylenol I have been giving him, a time frame like this is the 2nd, 3rd or 4th day he has been in pain. Then I ask her if we can do a throat culture, she looks him over good, they do the throat culture which takes about 10 minutes to come back and I tell her ok, now if it is not strep and it is just a virus, I do NOT want any antibiotics for this, BUT if it is Strep..He is allergic to Cefzel, Z-packs do not stamp it out, I would like to try Omnicef, or Augmentin if that is ok. Now she has been his Dr since birth and she knows I do my homework and she trusts me with my judgement with Ethan.

That is pretty much how I treat ANY Dr. I see, most of the time I have no problem, every once in awhile I will. Once I had pneumonia, I knew it was pneumonia I have had it like 20 times and been in the hospital with it 2 times, but went to one of thise urgent care places, and this Dr. did not like me telling him what to do. I was like we will need a chest x-ray, he sent a girl in with a breathing machine for a breathing treatment, I said no I wont do one because I have a breathing machine at home and have been using it with Xopenex every 4 hours, he argued that I needed another one, I said NO I have the machine at home and here you guys charge me $30.00 for 1 treatment, I wont pay that whe I can do it at home. He said No I think you have bronchitis, I was just quiet, we got the X-ray back and he said see I dont see any white areas that would qualify for pneumonia, I said why is it white on the top of my left lung...he paused for a moment and said well yes that does look like it could be pneumonia...ptttttt then we argued over the meds, he wanted to give me a Z-pak, those do not help me, then he said ok lets do Levaquin, I said well......Levaquin doesnt work for me either...finally he kind of threw up his hands and said well which anti-biotic would you like, I said Cipro would be ok. I dont think he was probly ever so glad to get rid of someone....lol but I dont care, it is my body, my money and my time and if I go thru all of that and dont get well then I will be going right back in a week.

Good luck with whatever you decide to do.

Hugs,

Lisa

Ah, Karen, that's about the same thing as the older docs who say to women, "AS is a man's desease". How frustrating. I know I'm not the only woman here that has had to deal with that one. Anyway, write the doc at note, send along a little research for him to read. I've done that and it did make me feel better and actually made the doc very appologetic for his remarks.
Cindy

Hi Karen, I would think that any healthcare provider worth his/her salt would welcome information such as this. I think a politely worded letter with information from The Spondylitis Association would be very good. I suggest The Spondylitis Association because this is an organization that is recognized and that being the case, if the information comes from them, I would think your PT would be less likely to discount it.

Here's their page on Undifferentiated Spondyloarthropathy. Spondylitis Association

Good luck.

Hugs,

By way of an update, I finally decided to write this doctor a letter. It took me a long time to write the letter because my early versions sounded very annoyed with the doctor and I knew a gentler approach would be better heard by him.

Finally, I managed to write a letter to the doctor in which I was just sharing information with him, not telling him off. I printed out this emedicine article on Ankylosing Spondylitis and Undifferentiated Spondyloarthropy and included it with my letter: http://www.emedicine.com/med/topic2700.htm Since the article is written by and for doctors, I hoped he would read it and believe it.

I dropped the letter and article off about three weeks ago and haven't heard back from the doctor and am guessing I never will. Still, I feel better for giving him the information. My concern was with the next patient he sees who has AS or Undif Spondy. My hope is that he will recognize the disease next time and at least that patient will get appropriate treatment from him.

Karen

karen the lioness...

perchance, pray tell did your note contain any of the following technical terms:

LOUT...?

TOAD...?

BEAVIS...? (butthead was the smarter one)

DISSOLUTE VICTIM OF CHRONIC WASTING DISEASE...?

MORON...?

INSENSATE JERK...?

DIM-BULB...?

uninformed and blissful in his ignorance, mired in his stupidity like a pig in his wallow...?

carry the fire, dear