Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Trying really hard not to hate Doc's

I can handle the misdiagnosis when it came to me. I should say the non diagnosis. Although I shall not forget the one Doc who looked me in the eye when I was about 14 and said I think I should put you in traction what do you think. Son of a gun wasn't kidding he wanted to know my diagnosis. Well my father was not in office yet because he was parking the car and my response was nonverbal.

I grabbed my coat and walked out of the fools office. I thought for an instant to ask him since my AS looked like a lifelong battle, was he suggesting tration for life. My main reason however was this guy had just seriously asked me at 14 to diagnosis myself. All I could think was YIKES, get my the heck out of here.

I have set aside the Doc who diagnosed me after countless test as suffering from an abnormal gait. Yep that was his official diagnosis and he was one arrogant so and so. He spent thousands to determine at 13 I walked with a pronounced limp. Kudos, your med school teacher would be so proud!!!

Or the guy who new I had AS and didn't know a thing about my personal life who determined that my accelerated AS was evidence that I was just lazy. Little did the fool know that I was still hobbling up and down the basketball court competitively with guys twice my size tryin to play basketball. I wasn't lazy but I was stupid, THankfully not as stupid as him.

Why this vent?!?

Diane is worse. I am in dire need of hitting something. Wasn't going to post anything because honest feelings would make this an expletive laced tirade.

Another smug incompetent tells us that he in his infinte wisdom has ruled out all scary reasons for her failing liver function therefore this abnormality will heal itself. Well Di ran her own blood through her job and the tests show it is worse. I swear the guy was so arrogant in his statement of her health that I almost felt ashamed of being so anxious about her bloodwork. He set aside my concerns as if they were uneducated panic and reassured me that this was no bother.

WHen will some of these jerks admit that if they don't have an answer it doesn't mean its time to lie to a patient and say "oh its all OK." I'm pretty sure I was wearing my big boy clothes when I went with DIane to his office and he could have figured out that I wanted to know what he honestly knew and not tales of an Easter Bunny.

We just lost a month being told don't worry, when we should have been told I don't know but here is a guy who might. I am burned out, phenomenally pi#$ed off and frightened for my wife.

I don't get it!! I know there are countless good Doc's out there I just don't need a mystery idsease at this time for my iwfe and a fool with an attitude who sends me off like a good little boy with promises that its all gonna be OK when he hasn't gotten a clue.

 
stevec-they also serve who stand and wait

Go ahead and hate em, Steve. If anything should happen to Diane because of a one month delay in treatment, I'll team with Bruno and go down denying I ever heard of you!

What a jerk....

Pete

Steve,

I am so sorry to hear the frustrating times you are going through. I've been there and I know how hard it can be on you emotionally. Please keep searching until you find someone you can trust, no matter how long it takes. The problem I'm finding with doctors is that with all the information they have to digest in the profession, they can't know EVERYTHING, yet they don't want us to know that , so they compensate for it by coming up with 'THE ANSWERS'. If you know what I mean. Fortunately, those of us dealing with this have the time and interest to really seek out the answers and we end up knowing more about it than most of the docs. I printed out 10 pages of info from spondylitis.org to highlight and show my doc some stuff I know he doesn't know (including how my pleurisy and enthesopathy - pain and inflammation from where the ligaments and tendons attach to the bone-as well as IBS can all be symptoms of AS or Spondyloarthropathies (SpA). They learn in medical school about the SI joints and that's as far as they go unless of course they have patients or family members with the disease and have an interest in investigating it further. Thank God my internist takes me seriously and actually likes the fact that I have researched this so much. Let's hope my Rheumy (who I see for the first time October 10th) is the same. Hang in there and know that we are here for you.

Love and peace!

Deb

I was misdiagnosed for over 20 years ("mild" RA, and my back pain was all in my head) and now am paying the price, facing major surgery because of all the mechanical damage to my back from years of unchecked inflammation, can't feel my feet because the doc I thought was so good up in Mass. didn't have the brains to send me for a neurological workup after the ruptured disc which made my right leg paralyzed for 3 weeks, and the many docs who DXed my left foot problems as being RA in the ankle, and now I know it's a fused foot, ankle is fine). This is so scary for you, Steve, and for Diane, just when you two should be just enjoying life with your three little girls. What are your next moves in this thing? I guess finding a new doctor must head the list. Since you and Diane must have said some pretty strong words in my favor when I was going through my own private hell with that spot (that turned out to be nothing) on my lung, I am saying some equally strong words, prayers, radiating positive thoughts your way.

((((hugs)))) to you both!

Cheryl

Dogs don't care if the house is messy

Steve, I can feel your frustration, but do not give up. You know how long it took most of us to get our AS diagnosis. Have you checked out a hemotologist for Diane? I swear that so many of the docs we see need a good" AS Kickin" I worked in the medical profession for so many years and could tell you horror stories, for instance the day the ortho put a cast on the wrong leg on a little 7 yr old girl in surgery. Just keep looking, there has to be a doc somewhere who will look into Diane's condition and help her...my prayers and good thoughts are with you both....hugs, DC

Steve,

I understand your frustration, it must be driving you both crazy. Is Diane feeling sick? How is this feeling to her?
Can she find another doctor with some sympathy and brains? Is that an option with your insurance?

I pray that things get better for both of you soon. Those three little darlings need some parents with no worries on their mind.

hugs,

linda

First I want to tell you how sorry I am to hear of your wifes illness. It must be soooo hard on you. If I recall correctly, you are located in New York. If I were you I would take your wife to see Dr. Ronald Hoffman. He is a complimentary doctor at the Hoffman Center. He is an excellent doctor who treats the whole body with medication and nutrients as needed. I guarantee he will perform the correct tests to find out what is wrong with her. He also has a talk show on every night on WOR out of New York. If I were closer I would love to send my husband there to see if he could help with his A.S.

I hear you, Steve. Sad to say I relate to your frustration. Can I vent, too? I've experienced the arrogant drs, the content to do nothing drs, the "try this over the counter med" drs, the diagnosis not made until it's an emergency (usually due to previously mentioned attitudes). And, sigh, the "since you have a history of depression, there can't be anything physically wrong" drs. Then I've watched family members go through the same stuff. As angry and aggravated as I've been for me, I think it may be even harder to see it happening to someone you love. I guess it may be because we have even less control. I'd like to beat the crap out of those moron drs but it will change nothing.

What has helped me in these times is to do just what you've done---vent. And also to do something physical to burn up some of that energy and make it more manageable. Then continue being there for Diane.

I wish you the best,

Bee

Steve, I wish there was something I could say, or do, that would make this go away for you. But I can't, so a question instead - have you all tried a naturopath? I don't know (obviously the 'experts' don't either), but a naturopath might look at it from a direction that the 'experts' haven't. Different way of looking at things and all.

You and Diane deserve happiness and peace and to revel in your beautiful girls. I just wanted you to know that this is exactly what I'll be praying for for all of you.

Love and light coming your way.

Many warm fuzzy hugs,

Kat

Steve,
I am so very sorry that Diane is worse. I am with Pete on this one... what a jerk!!!! I would have sooooo much more respect for a doctor if they would just admit "I don't know" and help you find someone who does.
I hope you are able to find a new doctor that will keep looking until he finds the answers for you all.
And I would love to accompany Pete and Bruno in having a lil chat with the idiot doctor. They can hold him while I B**ch slap him repeatedly.
Diane, you and the girls will be in my thoughts and prayers. I so hope you can get some answers soon.

(((((hugs))))))

Pam

"Just like moons and like suns, with the certainty of tides. Just like hopes springing high, Still I'll rise." Maya Angelou