Trying really hard not to hate Doc's

Kickas.org

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

Thanks Cheryl. Diane works on Saturdays at a Radiological Center. They are going to do a full liver sca and gall bladder scan. I think they are looking for blockages in the liver and despite gall stones being excluded he wants another look.

Gotta jump through these hoops because we will then take his file on her to a hematologist (sp?) to get more (hopefully) informed options or at least pointed in the proper direction. In the recommendation gathering stage right now. Got to be certain whoever we go to next is good at his/her stuff because there are plenty of good Doc's out there. Just need to be fortunate when you make your choice.

stevec-they also serve who stand and wait

Yeah, I had a similar start Steve. I ended up in traction in the hospital for a week. The Doctor had convinced my parents that I had a strange condition as all my disks were very small and slipping out between the vertabrae on a frequent basis. Finally, another Doctor saw me, thanks to Mom, and had some words with the Disk Doctor and I was released.

It had its good side, some of my classmates had visited me and I became the short term hero at the school for being subjected to this medieval torture.

I hope that Diane's doctor (little "d" intentional) is hanging around somewhere and someone else has taken over her case.

I understand your frustration.

George

Breb Assyl

Hi Steve

I know how worried you are about Diane. The rest of us are pretty worried right along beside you.

All those good thoughts and prayers that winged their way from the Crowe household on little Calebs behalf are flying right back to you guys. I will send a bunch of extra prayers your way too.

Keep a positive outlook. I know that it is not easy, but I will be hoping and praying for the best.

Hugs to you all
Lori

Steve,

Really hate for you (or anyone) to be going through this.

The #1 most frustrating part about the dr. thing is that there isn't any way to know if they're any good until they've wasted your time and money.

Recommendations help but aren't always good enough. My husband's mother went to a dr. that came highly recommended by several people I respect alot. He told her "by the way" you have stroke level high blood pressure - make an appt. to see me about that. She didn't.

Hope you find a good dr. fast.

Valentine

Steve,

After reading your post I feel so bad for you and Diane. I have experienced and seen so many times Doctors who act like they know when they don't. I thought of so many things to say, but I realized there really is nothing that I can say that you don't already know. I know how you feel and I feel for you. You and Diane will be in my prayers.

Harry
The purpose of life is a life of purpose.
Robert Byrne

Dear
Steve,
When a person gets shafted I think it is normal to hate, at least for a while. I would suggest that he hear from you, how upset you are toward him. Did you do that? I usually write out what I want to say and how bad I intend to make the person feel and them I am a bit more in control when the blood letting occurs. You have an enmorous amount of support, and I would join the Bruno club, cept, I don't think I would need any help. The comment that I have found is in the form of a question: you look him / her in the eye and ask for a referal for someone who knows a bit more than they know about the subject. Without having met you or your wife, you seem like family. I thought of you when I kissed my youngest grandson. While your are angry, realize that you have reason, but remember, hating too long will rob you of joy. There are times I am forced to wrestle with two legged skunks in my line of work. When I see it coming, I remember my peramaters and keep my thoughts and words within those lines.
There are a couple men, who when we see each other we hug and slap each other on the back. Pretend that my short thick body is coming toward you and you think to yourself, this guy really loves me and my family- because I do!

Lon

Steve
Very upset and I can make your area in a few hours to join Bruno et al for a little visit... I'll bring my 3 wood as it was worthless today and no great loss if it gets broken... Please let Diane know Maude and I have all of you in our thoughts...
Hope you have better luck with the new doc when you find him/her and at least get a handle on what you are dealing with as not knowing is always worse than at least having something to deal with...
Mike

Y'see. I'm sure I know what the problem is. You likely got one of those punk-as*-snotty-nosed med students.

When I was sick and in the hospital when I was younger (and was tired of being proded every which way), my Dad and I used to joke around saying, "Bring me your dumb and your ignorant - we'll make 'em into doctors!"

Ah, the irony.

Next time ask for the attending, although that's no guarantee either

Anything you need, you got it.

Love,
Jeanna

Every problem contains within itself
the seeds of its own solution

Hi Steve,
I am so sorry for all this anguish. It really seems unbearable for your family, to go through such ignorance. Arrogance seems to be one of the deadliest things on the planet. I hope you and Dianne will find some decent honesty soon, so you can get on with what you need to do. My heart goes out to the whole family. All the best soon!
Deejane

Hey steve,

I am with pete go ahead and hate them. I sure do. They have not made my life any easier. From the way it sounds you either. Is having a good doctor a bad thing to ask for. They want the money put not do the time. My old doctor I would wait for 4 hours and see her for about 4min. I finially got sick of it and found a new doctor. He is not to much better. He says AS does not cause that much pain. I want to laugh and tell him where to go.LOL

Go for hate it will make you feel a bit better.

Hugs,
Donna

Before

After

steve,

my thoughts are with you and your family. i cannot tell you how many doctors i have seen who have provided incorrect information, prescribed drugs incorrectly, mis diagnosed things, incorrectly interpreted lab reports etc. the best thing i have found is taking things into my own hands and never taking the doctors word for it.

Steve!!!
That is so friggin' wacked....can Diane show her results to someone she works with and get an answer???!!! Screw the other doc....

I know the frustration with the docs, hang in there, I hope things get better soon....I know some guys that would be more than willing to help Bruno and Pete change a certain doctors mind...

Peace
Linc

Linc O'Brien

I need some ruby slippers, well lets make 'em Nikes, click my heels three times and bingo I'm back in Kansas so tospeak and lady DI is one healthy lass.
I also need a world where Doc's are as genuinely concerned as you. My frustration with this man doesn't change the fact that nothing in the world is so good as a truly good Doc. I stll think of the gentleman who did my hip replacements as the man who saved my life.
People are just people no matter what the profession. The ability to care and try to give an honest reply is treasured no matter what the job.

stevec-they also serve who stand and wait

Thanks Pete. Nuns beat the need for me to obtain permission for anything into my thick skull with them metallic rulers they wield. I sure needed permission. Feel not as angry today just concerned and hopeful that the answer is coming if we persist.

stevec-they also serve who stand and wait

Hope you have luck with you r 10/10 rheumy visit. SOunds like a date that should be lucky if your superstitious. Thanks mostly for the good word.

stevec-they also serve who stand and wait

Thank you DC. I know too manyhorror stories but also lots of good ones. My Dad was saved after a hopeless strlke by a physician that tried a procedure that the local hospital had never done before. Friends of the family also Doc's who worked in the hospital actually dragged this guy out his bed at home because of their affection for my Dad. I t was sorta like calling in a marker for a life full of good deeds to save his life.

Got front page coverage in local newspaper months and months later. Actually more like a year + later when Dad had recovered enormously.

stevec-they also serve who stand and wait

Her loveliness is exhausted all the time. I figured it was her busy schedule of work plus the girls , plus me. She says it feels like that day after drinking too much tired where you feel the toxins just flowing through your blood.

She of course withheld this for a couple of weeks. TOugh cookie but not always making the best choices. God bless her .

stevec-they also serve who stand and wait

Thank you for the concern and suggestion Leanne. Gonna keep it real simple right now. Go to someone who I thought was the best and get his recommendation for a colleague who he would send his family member to.

stevec-they also serve who stand and wait

Unfortunately for me Lon I don't have the energy to stay in a rage very long. ALways found that looking for a solution and movin' on past the person who disappointed you was the best path.

Lots of doors to open to find an answer why waste time crashin about on this guys front porch making a ruckus.

Gettin' scared here in NJ/NY 'cause when you start giving ministerly advice I understand ya' crystal clear. Thanks for the love and concern and toss that newest Lon descendant a good solid hug for us here.

stevec-they also serve who stand and wait

Bruno says that the 3 wood although a wonderful suggestion tends to hook professionals. He saves his driver and fairway woods for thick skulled types such as his competitors. Its way to much club for a guy who is pencil neck type such as a Doc or lawyer.

The club of preference he believes would be not much more than an 8-iron. Also he thinks a nice finishing touch is one of those cheesy Goofy club cover heads when the 8-iron work is done.

Bruno is soooo right on the mark when it comes to using the right tool for the right job.

stevec-they also serve who stand and wait

Thanks. Absolutely worse to watch someone get lousy advice than to get it myself.

stevec-they also serve who stand and wait

Thanks for the hugs and thoughts and notion of naturopath. GOnna stay conventional for now. Follow my gut an d Diane's gut sorta way now. Looking to get Doc I respect most to give recommendation.

stevec-they also serve who stand and wait

Best medicine for me to share with Diane yet. ALthough some other yucks, much needed btw, in other responses. The notion of you Bit#$@slappin' somebody is crackin' me up. In fact just seeing it there in a post with your moniker on it is worth framing. Thank you and for the thoughtful words whidch I always come to expect from you. Mainly though for the image of you ... put the slapdown on the DOc.

stevec-they also serve who stand and wait

Put you in traction. Crazy world. Guess they could have suggested the rack or a bed of nails for you or I so we should be thankful.

BTW. Just seeing you name in a thread helps me. Probably made some sort of burdensome notion now but heck I guess it means you are still a hero. It really is the first thing I thought when I saw the batch of responses. Reassurance that some words would be offered by you. Thanks.

stevec-they also serve who stand and wait

Outlook is positive. I figure no sense letting the dark cloud hang around too long just get back to the task at hand. So glad Caleb is Kickin' butt in his recovery.

Not sure about getting retread prayers and good wishes.

Of course, then they helped work so maybe its better than getting freshly minted prayers that may not be effective. Having so much trouble making a choice lately. Aw heck give me what's behind curtain #3 Monty.

Thanks Lori.

stevec-they also serve who stand and wait

Thank you for the kind words.

stevec-they also serve who stand and wait

Thanks for putting my lovely wife in your thoughts. Hope to get to know you a bit better. WIth so many new folks here I'm still gettin' used to learning about everyone.

stevec-they also serve who stand and wait

Hey DOnna . SOrry tohear you are having DOc problems too. DOn't hate 'em toolong just keep pushing ahead until you get theone who works for ya'. Of course it don't hurt to hate 'em for a wee bit. Cupie dolls with long rusty needles might help.

stevec-they also serve who stand and wait

Linc, my brother from anotha borough. You got the high energy rollin' . Lovet o see it. I thought you said DOc should be "whacked"

Whew. Only said the situation was "wacked". I believe you are 100% correct in your assessment.

stevec-they also serve who stand and wait

THank you for the concern Deejane. Arrogance always been one of those things that bugged me. Big fan of the reward of doin' a good job is the doin'. Seems we live in a "hey look at me age" where acting impressive is more important than a job well done.

Wow did I just say that or did my father just possess my body. Man I'm gettin old in how I think.

stevec-they also serve who stand and wait

Yo Shtevo...!!

Beer is good food, 'bout to crash, just whack the wacky quack!!

Peash-
Lincster

Linc O'Brien

Beer is good food and I haven't had a bit all day. THanks for the laugh.

stevec-they also serve who stand and wait

So sorry to hear what you are going through - especially Diane - You have my thoughts and prayers for a solution.

As many people do on this site, we understand your frustration. For myself, it was initailly suggested that the chair I was sitting on at work wasn't level & that my posture was crooked to compensate for it. I also ended up having traction sessions for approx 6 months (which I had to pay for as it was not covered my the NHS). After that, there were various diagnosis' ranging from Lumbago, Sciatica, Depression, being told to loose weight and can you believe it, I was also told that the handbag I carried around was too heavy and possibly caused me to walk lopsided therefore caused the pain!!

I wasn't until I came to Australia & found a great Dr (that admitted that he didn't know everything, but that he would do his best to find out) that things started to improve.

The long and the short of it is - DONT GIVE UP. There will be someone out there that can help, just keep looking AND use all of us to vent your emotions.

Take Care & Have Fun

Gwyn

Steve,
I am glad I was able to give you a smile in all of this stress going on. Lord knows you have always been able to make me smile with your posts.

And I have it on good authority, that if the B**ch slappin don't work?.... a three finger pimp smack will always get their attention.

Sending out good thoughts to the lovely Diane and all of you.

Take care,

Pam

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

LOL Pam...
Art told me that years ago..when I had a real bad nurse...a real bad one...he said she deserved a "pimp slap"

The lady was so arrogant...no other method would have been as effective.

take care...

Toodles!
Angie

Hello Steve....
I read your post yesterday and am at a loss for words. I wish I knew what to say. You have been blessed with a beautiful wife and a trio of beautiful bambinas. I can only say that I will continue to keep you in my prayers. I know it's hard when you get the arrogant docs. Been there. Not sure if you remember the fancy schmancy rheumy I saw a year and a half ago...he said I did not think I had spondy. He suggested I do "200 situps a day..and you have mild carpal tunnel" RIGHT. I went to my neurologist.....he tested me. I did not have carpal. He said "Honey, you have AS...look at your hands and your back" 200 situps STILL runs thru my mind at times. He DESERVED that pimp slap too!

Then I find out, I have AS, Spondylosis, a bulging disc, and a herniated disc. I still cant believe he went to medical school.

I wish you the best my dear friend..and hope that you get some answers real soon. Turn the frustration in power...and things will work itself out....the Santos family is on your side as well...

Many hugs and prayers heading your way...

Toodles!
Angie

Steve,

I didn't respond when I first read this, because I really could feel your anger and pain, and I had no idea what to say. Still don't, but figured I need to say something. Just keep in mind that, perhaps "no news is good news." If the Doc's in their "infinite wisdom" can't find the problem, then maybe, just maybe it isn't too bad. I really hope it's not, but can surely understand how you and Diane must be feeling. Please keep me informed.

Your Friend,
Johnny

Hey Steve.

I well send re-treads and newley minted prayers your way. Nothing but the best for my Jamie bugs mommy!!! If I send both kinds then we are covered no matter what.......right???

Thanks for thinking of my little man. He is doing much better. I will have him for my regular Friday night Nana duty....

Send Di my best wishes and let her know that she is included in my morning and nightly prayers.

Hugs

Steve, Im sorry to hear that about Diane and just hope all will be well. However I must agree with Ya on the Dr thing. I think all of us with chronic illness come to that point sooner or later. You endured it with Yourself but now to have to deal with it with Your Wife is tooooooooo much.....Doc's HURRRRRRRRRRRMPH!!!!!
On the other topic, isnt it funny how so many of us seem to wind up going thru the same process in the persuit of a DX. At age 18 I wound up in the hospital for a week on traction, simply because they couldnt figure it out. In retrospect that would allmost seem grounds for malpractice........If only some way all of us could be repaid for the cost of getting those missed DX's..........Dosnt seem fair does it?

"ASKicking" "WUDCRVR"
WOOD IS LIKE LIFE
WITH WORK
YOU CAN CREATE BEAUTY

Hi Steve.

Sorry to hear about your problems.

I had exactly the same thing happen to me when I was first DXed with AS, I had attended all sorts of Doctors and eventually ended up with an Orthopaedic Consultant and he was treating me for prolapsed discs, however to keep a very long story short he sent me for a MRI scan and on a second visit for X-rays.

After having the X-rays of my lower back and pelvic area taken, the radiologist informed me that I had inflamation of the sacroiliac joint. He then forwarded the X-rays along with his report to my Orthopaedic Consultant who I attended a few weeks later for yet another appointment.

During this appointment the Consultant went over all this different types of treatment I could have for the prolapsed discs, I sat and listened, and told him that I already had all the treatments that he had talked about. He then told me the only option left was surgery and he then went on to tell me the downside and dangers involved.

I interupted him at this point and asked him about the inflamation in the sacroiliac joint to which he replied "THERE IS NONE." I pointed out that the radiologist told me that I had inflamation and it was then that he pulled the X-rays out of their sleeve and out popped the radiologists report along with the pics. (hadn't even bothered to look at the X-rays or read the report)

The Consultant read the report, looked at me and said. "You see all that stuff I told you about your discs, forget it, this is much more serious".

SUCCESS DIAGNOSED AT LONG LAST.

Steve I know exactly what you went through in the past and what Diane is going through at the moment, I think 95% of medicine is GUESS WORK and the remaining 5% is blatantly obvious injuries etc.

So give Diane my best wishes and I hope everything works out in the near future.

Good luck

Ken

Steve, I just saw the post after being out of town a few days.
I'm so sorry you all have to go thru this. SURELY, someone can give you some answers. I like the idea someone had of going to a hemotologist...
Good luck! 'be prayin' for yall!
Darla

"Starting today, your kindness will lead you to success" from a recent fortune cookie