Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group So, have I been faking it then ????

Oh Mags, this absolutely burns my butt. I cannot believe that with all of the symptoms you present, she is telling you that there's really nothing wrong. Makes me want to drive to Ottawa and give her a piece of my mind.

I'm with Mel, you get your butt down here to Toronto and we'll set you up because both of us have good rheumies, who do believe that we have AS, who do believe that women get AS despite our non-male presentation of the disease, who don't make us feel like idiots. Mine is the editor of the Journal of Rheumatology (old and male by the way) and is associated with Dr. Robert Inman (one of Canada's top specialists in this area) at Toronto Western, Mel's is the head of Rheumatology at St. Mikes. Between us, we'll help you blow this so-called doctor out of the medical waters. Lemme atter, I tell ya.

In the meantime, know that we here at KA believe you, we know the truth of your condition and we are behind you 150%. How I wish I was there right now so I could give you a great big hug and hold you while you cry or listen while you rage. I would do either happily. Add the chance to whup this 'doctor' upside the head and I'd be there in a flash!

Many hugs,

Kat


"I haven't failed. I've just found 10,000 ways that don't work."- Thomas Edison

Hi Maggie, a bit late to the discussion but here's my two cents..if it's at ALL possible, find a new rheumy and see your old doc in the meantime...and tell him/her what this "dr" did to you. I recently had to see my gyn for ovarian cysts (that interestingly enough, my rheumy found and said GET CHECKED OUT) and he actually said to me.."you have what? You know, with the seronegative things, we really have to wonder if there's anything really going on or not". I was floored, and went home in tears (plus, even tho my mom actually had stage one ovarian cancer, he thinks we should "wait and see"). Fortunately, I saw my rheumy the next day, and he got all red in the face and told me to never discuss my as with that dr again. He said, you leave that to me and remember he KNOWS NOTHING ABOUT RHUEMATOLOGICAL DISEASES. I love him to death. There are good drs out there, and please don't give up on all of them because of a bad few. We are all here for you and will be whenever you need a lift. Take care, my thoughts are with you, especially, because I felt just like you only a few weeks ago.

Aimee

Scott, Aimee, Hallie, Caitlyn and Gabriel

I agree with the other sufferer's here. Find another doctor. I went throught the same thing you did. I had dozen ofdoctors say it was nothing. I had mylograms, radiation scans, MRI's......posy for B27, Iritis every six months. But I kept looking for one that knew what was going on. I found one that finally diagnosed me with AS after 15 years of sufering. But by the time I was diagnosed with AS. I had severe fusing. Now I am fused almost everywhere, SI Joints shot and you know the rest. I am on Enbrel, and that has helped but has not corrected the mechanical damage that I have. So, go on and see another rhuemy. Just because you do not have enough fusion does not mean you do not have AS. Those darn quacks.... Good Luck.
Dan

Hi Maggie
Please don't get upset over the likes of HER! I am now in your position regarding the early diagnosis and since having xrays of my si and neck, have been told that I have borderline osteoarthritis in my lower back. CRAP!!
The problem with all doctors, is that they put their own interpretation on findings. If they are not familiar or experienced enough with dealing with patients who have AS, then they cannot deal with their treatment appropriately. Do not despair love, because you know yourself how things are. You know how much pain you are in and all the symptoms that you've been having over the last few years. I told my doctor that nobody would detract me from thinking that I had AS, because I know what I am going through. We can all say that we know much more than most doctors because THAT'S THE TRUTH!! You could change doctors several times and still not see one who knows enough about AS.
Also Maggie, the signs don't show up in the early years of this terrible disease, especially on xray, and as the cost of having mri's, bone scans, etc. are astronomical, most doctors won't even go that route. So, chin up girl, I'm with you all the way, and so is everyone else here. Take care honey.
Love
Sue

Hi Maggie-

Wish I could tell you to hang in there, find a new doc, get another opinion, etc., but I’m struggling with that myself. It’s hard enough dealing with all our "stuff" without having to deal with the doc’s cr@p too. What I can tell you is that although I’m not an expert, and evidently neither is my doc , it’s not AIYH…and don’t let anyone else tell you otherwise! How could they possibly know?!

Since being dx’d and un-dx’d almost simultaneously this month, I have been on one heck of an emotional rollercoaster. I even tried to walk away from KickAS since I didn’t "officially" belong here. But I just couldn’t do it because no matter what anyone else says, YOU are my people. This is the only place that makes any sense of it all. If the docs could give me any explanations that make any sense, I’d gladly entertain them…but so far they just can’t do it!

My husband wanted to have a few "words" with my rheumy, but I told him it just wasn’t worth it. If the doc can’t even manage some basic communication skills, then I definitely didn’t want to be treated by him! So I’m going to take my test results and move on…just as soon as I get enough energy (mentally and emotionally) to do so. In the meantime, I find some peace here…

Just wanted you to know that you’re not alone…and even if you give up on the doc, don’t give up on yourself!

Hugs,
Jules

Big Soft Hug for the Newest Member of Our Club!!!!!

Look, you have it. This is what an American Doctor does when they dump you as a patient because they don't like your insurance. I know this for a fact because I have been told by them the insurance would not re-imburse them enough to run something like a scan or further tests, and then they tell me I don't have it. Then I chew their [####] out, they label me as uncooperative, and we part ways.

They are scam artists who have learned to earn a living by pushing the drugs company's pet drugs du jour. Antidepressants are very fashionable right now.

Recently their was some book written by some doctor (I need to do a search on this but I'm time crunched right now, I bet somebody else here knows who I mean) which was profiled in Newsweek magazine in the past year. This MORON claims that all , yes ALL, back pain is basically a mental problem of perception related to emotions and that people with back pain need psychiatric care, not pain medications. I read this, and I thought, OH SH*T. Here we go. I figure this guy is now the darling poster boy of the insurance companies who don't want to shell out for any pain medications or other treatment. Sure enough, in person and in various television news magazine shows, I have heard Dr. Moron quoted almost verbatim, but uncredited, when speaking about a patient's pain as not having any physical cause, including my own.

And believe it or not, I am starting to agree with Bilko on woman physicians, because, while one I have had was beyond excellent, the rest have been digraces to the profession. They don't read the charts, the forms I have filled out, they don't take notes, they don't listen, they contradict every thing I say. Since I am not reticent and have slightly above average verbal skills, they can barely contain their dislike when I don't play along with whatever their game is...which is, I suspect, get me out of the office as fast as I can without treatment.

I still maintain we REALLY need to go to the ancient Chinese system of the patient who was not treated right blocking any form of payment to those who are abusing us verbally, albeit passively-aggressively.

Maggie, I could not even imagine being in your shoes right now.
I would be so upset and you have every right to be whining, screaming, crying, whatever you feel like!
Don't know if anyone has said this already, but if I were you I would be getting another rheumy quickly, especially if she still has this attitude after the tests are done.
Maybe the results of the tests will show inflammation in your SI's which will prove the AS to her. But knowing this nut you are seeing she will probably just say you have a case of sacroilitis without realizing that that goes along with AS along with your other symptoms. Seems to me you meet just about all the citeria for AS and someone else realized that when they gave you the diagnosis in the first place.
Maybe you just need to shrug this off for now at least until you get the tests done. Afterwards chalk it up to making the mistake of seeing a quack and go on to find another doc. We have all made that mistake before and have had to do the same. Some of have gotten lucky and some are still searching.
Even if she did continue with the AS diagnosis, by the sounds of her attitude would you really want to keep her? I don't think I would.
If your hips are bothering you alot then chances are inflammation will show up on your scan. Are you having the scan where they inject the dye in your system (can't remember what it's called)? That's what needs to be done to show the inflammation, and as I am sure you know that is usually all that shows up for some people before any radiographical changes are seen later on.

Please don't let this doctor get to you too much. Remember, she is only human and is capable of mistakes and there is a good chance that she is wrong...a very good chance. She is probably one of those docs who just don't know enough about AS to make a diagnosis.
You have been very brave, but now it just looks like you're going to have to be a little braver, because it seems you're being put to a test (actually ,you are literally LOL sorry couldn't resist) But you, like many of us here have...willl get through it. You just have to struggle a little more to fight for what's right. You know somebody gave you a diagnosis before for a reason, and that's because you have all the symptoms plus to prove you have AS, and you have to keep thinking about that.
Yeah it would be nice for you not to have AS, but I don't think that's the case and you need to know so you can continue with the right treatment and pain relief.

Keep your chin up ok. We're here to help you with this.
Big hugs to ya,
Lisa

HI Maggie,
I haven't posted in awhile, but I wanted tolet you kow that I know of two great Rheumy's in Ottawa. How can she dismiss your recurrent bouts of Iritis,This is a very rare eye problem which always is related to some type of auto-immune dysfunction. My grandpa had RA, and sever iritis ,mine is A/S and iritis. I don't understand how she can dismiss it so easily.Pm me and tell who you saw, I may know something about her.

Best Of Luck,
Janet

Hi Everyone

Thankyou all so very very much.
I'm allways on here so late at night - I fear I would have to stay up ALL night to answer each one individually.
To tell the truth, I'm at quite a loss for what I should be saying or thinking about all this now. She managed to really mess with my head.
I am actually glad for the amytriptiline because I know others take it for nightly pain and to sleep better. I also know that I have been pretty depressed for some time so this may help. I am taking 20mg per night ( just started tonight ) Does anyone know if that is a tiny or reasonable dose or what ? I did take this about 18 yrs ago for depression and it worked wonders for me but I have no idea what the dose was.
I allways had no doubt in my mind that I have AS but actually, I wouldn;t care if she had come up with another name for it so long as she would treat me properly. To tell me there is NOTHING wrong is a real slap.
I appear quite normal and can touch my toes thanks to vioxx. Before vioxx, I could barely walk, could not bend over at all, had to lift my own legs out of the car and had EXTREME pain in my left hip etc..........
The vioxx and LSD are not cutting it anymore, especially in the night time so I thought I was doing the right thing. Maybe a rheumy would get me on a DMARD or something to prevent damage. You know, when you have just turned 50 you start to really really worry about letting yourself get in bad shape. It seems that it is more and more important to take good care of ourselves. Well - I tried !!!!!!!

Get this
Damage to my spine - dosn't know why ( and dosn't seem to care either )
Severe osteoporosis still stands obviously but she didn't discuss it at all.
NO REASON for the pain in my hips - BUT - did offer cortisone shots ( I declined )
Dry mouth and eyes and Iritis - she said " lots of people get that " !!!!!!!!!!!!!!!!!!

I could go on and on - I keep remembering more bits of what she said.
No use in repeating it all I guess.
I just don't understand really. I have all these symptoms which are making life miserable and she dosn't want to truly help until maybe I have much more irreversable damage ??? Is that how it's supposed to go ???
She won't take notice untill I'm crippled up ??? is that it ?

She had previously recommended physio for AS, now she recommends physio for mechanical damage to the spine.
Wouldn't these be different treatments ? Would one treatment hurt the other ?
Anyway - in Ontario, physio is no longer covered by OHIP and I have NO private insurance.

So, actually, she did offer up some forms of treatment but was so
very short, sharp and rude and actually said - " there is NO reason for your pain and I cannot give any diagnoses.

Yes, it is hard to find doctors in Canada.
As I was waiting ( 1 1/2 hours by the way ) for my great 10 minute appointment, I watched another rheumy escorting each of his patients out after their visit. He said to each on " Now call me if you need to ok ? " - ooh, I wanna go to him

I have an appointment with my own doctor in October so I'll see what she has to say.
After that, I'm at a loss. Cat and Mig - I guess I would need a refferal to see yours, right ?

ok - I'd better end my second novel because I actually could go on and on and on.....
and I know I am repeating myself here.

Thanks again for all your support.
Don't know what I would do without you all.
If they ever come up with a name for what ails me and it isn't called AS - your not getting rid of me ok ?

Hugs
Maggie

Mags,

20 mg of amytrip that's a pain dose if I remember! The Amytrip is good for night pain and should help you sleep better. Most of us are a bit short on a good nights sleep and that's a wonder on it's own.

Go see the other Dr! Yours seems a bit off to say the least!

Steroids or pain block in the hip/SI are as much a diagnsotic tool as for releif. I know you are concerned about steroids esp with the bone thinning and quite rightly.

From what you have said the vioox and the diet seem to be doing you the World of good! That's some progress you've made!

Hang in their, maybe see your GP sooner rather than later! If the only the Dr.s would listen and treat!! Not get advisarial because of some perceived threat or lack or knowledge!

Plenty of hugs

David