Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Follow up Rheumy visit

Well folks, hope everyone is well tonight......
I had my CT scan for my abdomen today....and then the dreaded follow up Rheumy visit.
Needless to say I was very dissapointed.

He went over my bloodwork and said everything looked good....which is great! BUT.....when I explained to him about my ankle pain....he checked them both...but did not offer an explanation or reason......just told me to up my dosage on the Ultracet to 2 tablets every 6 hours. I was real dissapointed. I told him that it hurt to step down on it. He kept squeezing and checking for swelling. Well there isnt any....I knew that already.lI have bony ankles....they just hurt like heck!! Then he had me sign a form to obtain the Hlab27pathology from my previous Rheumy. I told him my GP and Rheumy both ran the test and ANA test. Anyhow..he offered no suggestions....just to do physical therapy and wanted to see me in one month. WHAT for I might ask???? He didnt explain anything on whether he agreed or disagreed.

That is...........until I get to the parking lot and look over my receipt which listed my dx........
Diagnosis: 1. Fibromylagia
2. Lower Back Pain [ I thought that was part of spondloropathy>???)
3. Spondloropathy.

I was so angry.....not really angry, just disgusted. He has checked me twice for pain....and I dont even have the same tender points. I dont have fatigue. I get tired come evening....but that's cuz of my knee and my back hurting from running around even more with my girls. My originally Rheumy said it was not Fibro and was adament about it ....he said it was mysofascial pain. I've looked over many of the symptoms of Fibro, and although yes it fits the description of some of the foks that do actually have Fibro....I dont meet any of those. I am on the go constantly, pain or no pain. I dont have the pain points except from the trapezius muscle which I injured in a car accident about 97'. Why is that some doctors MUST see some kind of serious swelling to make a connection with pain?? Sorry to ramble. I was so hoping this doc would offer me some clues. I believe my old Rheumy is who I will be visitng as he knows where I have pain and now that we had our "special talk" [laugh2[ Hopefully things will be better. I did try......Lord knows I did try, especially with that warm blankie and room heater !!

My point? None really.....Just needed to rant and rave......thanks all....

Toodles!
Angie

Hi Buggie,

Sorry to hear that there is yet another crappy rhumie out there. Did you happen to notice when he turned around to pull your Dx from a hat? I think that is what many of them do. I suspect that is why they make you wait so long. They have about ten different slips of paper, varying from "Dx: It's in his/her head" to "He/she will die within the next 24 hours." The more advanced rhumies have a dartboard to the same effect, and the really good ones have one of those magic 8 cue balls.

I hope that the ultracet helps your ankles untill you get to a rhumie who practices medicine rather than holding a lottery, with prizes like FMS and RA.




http://www.power-over-pain.org

Take care my friend

Daniel

LOL !!! That was too funny Dan!!!! The sad part is it's true. I dont know how he came to this conclusion. I have not had any trauma or trigger poiints. I have sharp dagger like pain in my bones. I know....because when Art rubs them it feels better. I know with some Fibro patients they have skin sensitivity. It just doesnt jive. I tell you.....this is the SECOND Rheumy I visit with a big schmancy group....and it was dissapointing to say the least. Fine if he thinks i have FMS....but explain to me........tell me why....dont just write it on my receipt....that is ridiculous and unprofesisional in my opinion.

My old Rheumy was a grump and always busy, but let me tell you...he dx me with inflammatory arthritis on the first visit......second visit ran the tests.....third visit I had the dx and positive ANA test and Hlab27.

You had me rolling on the floor with the cue ball..... Gianna has a chihuhua one from Taco Bell.. Sometimes we shake it and she just hates it cuz no matter what her question is, it always says....."ask later" or "unsure" or something to that effect !! I bet money they have one of those too. It's like if I dont have all this swelling then it does not justify saying I have arthritis. I dont get it. My GP and Rheumy have never said I needed swelling to acknowledge I have AS.

Chalk that one up to another bad "seed" By the way Dan ....I wasnt actually rolling on the floor......b/c I would not be able to get up..... But I did get a much needed laugh. Art and I did some searching on the internet and I did not match up to any of the symptoms....except the trapezius muscle. I dont get migraines....I dont have fatigue. I get tired, but that's just from me walking each day. I dont give up Dan.....I got to keep fighting this ugly disease. It can go pick somewhere else, but I dont have time for it......I need to enjoy my life.

Back to the old drawing board. My old Rheumy is going to squeeze me in after the 6th ....they said to call in and he will squeeze me in that same day.....whew!

See ya my friend

Toodles!
Angie

It took me years to get fibro out of the equation when it came to a DX, seems to be a catch all, not fair to those who are truly suffering from fibro and not fair to those (us) who do not meet the DX criteria - - especially since there are still too many docs out there who equate fibro with being a "woman thing" and due in large part to emotional difficulties, hence can be taken less seriously than, say, RA or AS, even though it is a debilitating condition to those who have it. When I first started having ankle problems there was no swelling, just pain, it was only after a few years that the deterioration became evident to even the most jaundiced rheumy eye. I used to also get terrible pains in my shin bones, like a toothache, but again, nothing visible. I still have the RA and AS DX - - looks a bit like alphabet soup - - but I suspect I don't have RA at all, just don't fit the "profile." It helps me when it comes to getting the high priced meds, though, so guess I shouldn't complain.

My old rheumy (wish I could have talked him into coming to Florida) was very interested in reading anything I could bring him concerning women and AS, and it was his opinion that spondylarthropy was more or less a pre AS condition and should be taken very seriously to prevent future damage to the spine.

Cheryl

Dogs believe in long term relationships

Good morning Cheryl.....
Yes, I agree with you 100 percent. It is unfair to who folks who dont meet the Fibro criteria and so much more unfair to those that actually do have Fibro. Yes, they always look at it as a womans issue. It is not. Its about someone having a chronic painful condition that needs to be treated properly. Unfortunately that doesnt happen often enough.

I was at my new Rheumy's office that first time last week and there was a lady there that I befirended. Well she had a dx of Fibro. She didnt agree with it....but when we discussed some of the symptoms....she had many of the Fibro symptoms. Perhaps it is a secondary conditon for me. I just dont think it "jives" Art and I surfed through the internet last night and I didnt even meet eleven of the trigger points. Where I hurt they were not tender spots.....you had to press down real hard.....then yeeeeeeeeeouch!!! Like my hip, my knee, my ankle and my right hand. I told Art about the doc pressing on my chest to see if it hurt...there it did hurt alot.....felt like he was jabbing an ice pick there. Art asked me to point out where he touched. He said that was my sternum and thats inflammation from the spondloropathy....he said.....put a Big "X" on that doc. We'll stay with my old Rheumy, he may not be jovial, but he has pinpointed all my conditions to date. And he does BELIEVE women get "spondies"

What your old Rheumy said.....my Rheumy told me that spondloropathy is a very serious disease and needs to be treated properly. This he told me when we had that "special talk" about having more time to discuss what's happening!!

Take care

Toodles!
Angie

Hi Angie,

About the fibro diagnosis...When I went to see my PCP in the spring there was a problem with my insurance so his office staff printed out a copy of the info they had sent to the insurance company. It included diagnoses and charges. Much to my surprise, fibromyalgia was there, but not AS! Hmpf! I DO NOT have fibro--don't meet the criteria at all. I strongly suspect that my doc is one of those "women don't get AS" types, but I'll be setting him straight when I go back next month! When I went to my rheumy last fall--my AS is so mild that I only have to go once a year--it didn't hurt at all when she pressed on my muscles. She said that meant that my pain was caused by inflammation. When I had to lie down on that hard x-ray table it hurt like the devil. Anyway, I know how you feel about being told you have fibro. I know that it's a real disease and I'm really glad I don't have it, but I think some docs still use it as a euphemism for IAIYH/women don't get AS.

Connie

Hi! Ladybuggie!
Boy this really ticks me off. I just dont understand doctors, I think most pull a diagnosis out of their AS. I havent yet been diagnosed yet but have had HLAB27 positive and had iritis twice now and years of suffering. I went to supposably top rheumy but was told he would diagnos me with fibro. So when he examined me he said well let me check your ribs. He said well they are very rigged and that is a sign of AS but im still going with fibro i just about lost it. Never went back to the squirrel. Of course with that he also said its pretty much a mans disease. Now with your dx i also have a new doctors appt. sept. 4 and really not looking forward to it. If i here fibro one more time ill scream. I think if they dont really no they just guess its fibro. Real professional dont you think. Good luck to you (and me too haha)

take care connie

Hi Connie.....
good to see you !!
Double Hmpf to that doc too!!
I know my body. I know when something is not right. I know the difference between my joint and a muscle and blah blah blah. Take for example yesterday, he also asked about my abdominal pain..and said he hoped I found out what it was.....but I could tell by the way he was looking at me he probably thought it was all in my head. Well, I got a call today from my GI, my pain IS real. I have a cyst on my ovary. That is why I had so much pain and nausea. I was going to call him today but still felt a little weak and tired but you can bet come "manana" I am giving him a call and asking the nurse on what basis did he make my diagnosis on, and yes my pain was real it is a cyst. Oh yes, and of course.....to go look at KickAs and see all the women out here that do have Spondy pain. It's real and it's not just for guys. Although the ideal woudl be for neither the males or females here be sick...period!!

take care....let me know how your visit goes......as Gianna would say......
"Go get 'em tiger"

Hugs]]]

Toodles!
Angie

Hi there!
Yes....oh yes....squirrel sounds about right....must be related to the doc that I saw. I dont mind if he said he thought I had Fibro as well, if he said something and explained his reason for the dx. Instead he just wrote it on my receipt. I think since I pay him for his services, he could in least be so kind to explain why he has written what he has.

Good luck on your next visit as well......
I know, it's like rolling the dice and praying you get a good doc. I'm staying with my old Rheumy instead.

thanks for the chuckle.......squirrel...heehh.....


Toodles!
Angie

I have had fibro for over 30 years and that causes problems of it's own. When they know you already have that diagnosis, they don't bother to look further. I'm so fortunate in my PCP who is always cautioning me....DO NOT ASSUME EVERYTHING IS FIBRO. He is committed to finding out what is wrong besides that...because I have some other problems that are not fibro. One of the hallmarks with fibro is cognitive impairment....a real problem for me. However I have blurry vision and bladder and bowel incontinence which have nothing whatsoever to do with fibro.
Did you know that a rare symptom of AS is cauda equina syndrome which causes bladder and bowel incontinence? I've mentioned that before on the board but received no replies so I assume no one has that problem, or doesn't want to talk about it if they do.
I have tested negative for HLA B27, and have requested an xray of my sacroiliac joints. We'll see what that shows. As for the incontinence, I was tested for two years for MS, I've seen urologist, gastroenterologist and ob-gyn. All say...no problem that they can see.
I suffered for 25 years before getting the diagnosis of fibro, and I understand your frustrations at being told you have that when you don't fit the criteria. I do, and have no doubt I have it, but also think I have AS. But, we'll see.
When you know your doctor is wrong, don't accept what he tells you....no one knows your body better than you and if your doctor doesn't give you credibility for that....you should get a new doctor if possible.
Leona

consider yourself hugged!
Love like a teddy bear, with imperfect eyesight and arms open wide.