Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How do I make them listen.

I have posted before, but I'll try it this way.

- I have AS, why do I think this A: My father has it B: the pain is undeniable, C: I've had symptoms for over 5 years now, perhaps as long as 11 (1 foot issue at 16).

- My pain is in the lower back, left lower rib, and it burns at the mid spine at T10 and T11. The pain is cronic, I hurt so bad alot of the time that my body goes into a form of shock and I get severe runs (runs to the washroom that is).

- I have been to the doctors and dispite my family history on the subject, and the fact that I have consistant severe pain, they dismiss me as normal because my X-Rays don't show enough DMG to meet what appears to be considered abnormal DMG. They say they can see what appears to be arthritise DMG in my spine, but then they all go on with what appears to be textbook responce " everyone has arthritise" and they just blow me off. What I can't understand is why ?? If everyone has it to some degree or another I have met few people, with the exception of my father that feel cronic dibilitating pain such as myself. I even made my way to 1 rumitoligist named Dr. Duff, she didn't even give me the time of day, she took one look at me, being a fit 27 year old male, and made up her mind. I guess I didn't look like the rest of the 80 year olds she treats, and she apparenty wanted nothing to do with me, didn't even take the time to examine my X-Rays herself, so I walked out. The Arthritise Society reconizes me to a degree, but they are treating me a potential AS case, they say all my symptoms match, and sent me a theropist to teach me how to sreach properly. So recently after 4 years I finaly found some place that will listen to me, but even they say it's hard at this stage to be sure (dispite my father obvious condition)

- here's the catch, My Father like myself does NOT have the HBLA gene like most of you have, we are told that 20% of AS people do not have this gene, therefore I don't have the luxery of an early diagnosis, and like my father before me the medical community is tossing me around, or passing the buck. My father went 15 to 20 years not knowing what was wrong with him. It wasn't till he couldn't tie his own shoes anymore that the DMG was at least visable to them, and even then they told him he had a slipped disk, after a few more years the diagnosis turned into a herniated disk.

- They prep'd him for surgery on his spine for a hurniated disk, and wheh the spinal
surgons/specialist cut him opn only then did they realize the extent of the DMG, only then did they have an idea what was wrong with him. He has 3 other followup operations on his spine,

- IF THEY WOULD HAVE NOTICED SOONER, they could have taken action to prevent the massive DMG that his spine endured without treatment of any kind, they only really gave him pain killers, he didn't really get any Psyo, he didn't get the attention AS deservs.he was 47 years old when he has his first operation, the pain started in his early 30's.

- What frustraes me is now I'm still in the same boat 20 to 30 years later, and nothing has changed on the medical front, how do I protect myself ???
how do I make a living, or get any help when all I recieve is ignorance.

- I have 2 small children to feed, and 1 beutiful wife to keep happy. At this point I feel I;d be better off to them dead, I'm a walking pain stick that nobody want to listen to, or acknollage. My wife is young and my family deserves a man that can provide. I couldn't leave them standing though, so this is really a hard issue for me to face. I'm extremly depressed, I'm amost always in some degree of pain or general discomfort, I find my streaching excersises hurt me, but I keep doing them, no pain no gain right ;)

- What hurts is not that I have no future, it''s that my future is now extremly limited, and I have had a hard working life. I'm not extremly educated, and I have survived on my bron. Now I have nothing, no skills no bron. I feel like a man having a midlife crisis, but I'm only 27. I wish I had at least a few more years of maturaty at least before I had to feel like this. perhaps I would be able to deal with it better.

- In a way I'm gald i founf this place, but even a nice place filled with great people isn't going to help me much at this point.

- I'm sorry to sound like a whiner (trust me i hate being someone with a problem) ,and I hate when peole lookat me like I'm som kind of crazy Hypoconreact. Heck I never used to goto the doctors, when I needed stches I just let it heal, when I broke my hand I set it myself them went to the doctoors just to make sure I did it right and get a cast. I DON'T show up and complain for no reason. The only medical history I have is at 16 years of age they had to remove a ceased/fused joint in my left food cause I had a hard time getting dress shoes on.


Well there is my story, if any of you live in Ottawa, and might be able to talk to a doctor about me that might listen, PLEASE drop me an email. I'm going crazy here watching people dismiss my pain all the time.

Yours truly......Shawn

Hi Shawn,
I don't have an answer for you, but I want you to know that we here at KickAS are here for you. We know that you're not a hypochondriac or a whiner. It is better for your emotional health to vent and not keep all of this inside, so feel free to come here and do it anytime. The only thing I can suggest is to keep looking for a doctor who will listen to you. There has to be one out there somewhere. Hopefully, one of our Canadian friends can help with that. And please don't think that your wife and children would be better off without you...they would NOT....they love you and they need you. My prayers are with you.

Connie

Shawn,
PLEASE don't think of yourself as a whiner. It is VERY frustrating not to be diagnosed and to be in pain all of the time. That is something that I don't think happens with some other arthritis'.
I wasn't diagnosed till I was 49 and had a flare up for a year before that. Like you, I looked fine. I could work and keep my house up, but I was so fatigued it took me twice as long to do half as much! I was lucky to have 2 good drs. to get me to that diagnosis.
Right now I think I have an excellent dr. She is in Erie, Pa. though. That's a bit of a drive for you. I'm sure the Canadian brothers and sisters will have ideas closer to home.
Please don't feel like your family doesn't need you, tho I can identify with your feelings. I'm not the main breadwinner here, but I feel bad cause I NEVER feel good and think I'm a bit of a downer at times.........
and not much fun after 8:00pm
But I'm sure they love you and only want you to feel better.....
My thoughts and prayers atre going out to you in the hopes that a GOOD dr. comes your way!

Take care and come often, it helps to be with those who really understand,
linda

marabella

HI Shawn,
Your story is hauntingly familiar to most of us. I understand how extremely frustrated you are about the docs blowing you off. They did me too...I was 30 ish, female, and didn't "look" like the older crooked men they were accustomed to seeing with AS.
I had to ask to be referred to a rheumy...she was practically useless...so back to my doc I went to ask to be referred to a different rheumy.
Finally, I found one who acknowledged I did indeed have AS. At least then I knew for sure, and was ready to go to battle fully armed.
There may be someone here who is being treated by a rheumy in your area. I hope you're able to find one who will not be so quick to dismiss you.
Don't give up...go to another doc....then another ....then another...as many as necessary.
Hang in there Shawn...and I hope you stick around here. There are some pretty terrific people who will ALWAYS lend an ear when it seems nobody else in your life seems to understand what you're going through.
Cheers,
Steph

I've had a back ache since I was 26, but I didn't know what was wrong with me. I can't imagine what it would've done to me to know already and them not listen. It's been bad enough for them to just shrug their shoulders, or tell me I had anxiety.
I've only just figured it out, so we'll see what happens when I go in and tell them.
I had a CT scan when I was 33 and the Rheumie saw it then, but just said it was early arthritis??? NOT AS was written on my notes.

I don't know what I'll do if my blood test is negative. Although I'm 45 now, and we know they take age into consideration.

Maybe you could ask for a CT scan. I believe they show things better. I had an MRI 3 years after the CT scan, and it showed up with nothing.

Stick around, that's what I'm doing. You may come up with an idea by listening to someone here.

You're not alone. I'm in the same boat as you.


file:///c|/my documents/unicorn.gif

The next time you see your doctor/rheumy, etc., ask about undifferentiated spondylarthropy, it can be a precursor to AS, the beginning of the process, so to speak, all the pain and no noticeable changes (yet) in the spine - - and no respect in many cases from the medical professionals who want to see FUSING! I've never been tested for the gene, so don't know if I have it or not, and it took me from 1980 to October of 2000 to get a DX when I finally started fusing. I was DXed with "mild" RA, looked "normal," and I'm sure even my family who loves me thought at times I was turning into a raving hypochondriac! It's a tough road, but you have to keep battling the docs. In the mean time even if they think it's "only" arthritis you should be able to get something for pain relief, and also you need to do daily stretching, moving, etc. Is your pain worse in the morning? Do you you wake up stiff and does it take you an hour or two just to be able to walk without being all hunched over? That's another sign it's an autoimmune sort of disorder, different from OA because with OA you feel better at rest than moving and can't "walk it off," but with RA and AS - - and undifferentiated spondylarthropy - - you get less stiff with movement. It's not a cake walk but don't lose hope, there are lots of family people here with small children, including one whose wife is currently expecting triplets!

Bad experiences with the docs are sort of par around here, I ran into a GP last winter (after I ruptured a disc) who looked at my MRI and said I just had OA, it was "normal" for my age - - right, but I'm not exactly in my 80s and that's about how old my spine looks. And if fused SIs are "normal," I guess a lot of us are normal folk here. Yeah, lots of OA, calcium deposits, DDD, caused by years of inflammation - -but she didn't bother to even read my file and my history. Fortunately I have a very good rheumatologist who knew exactly what was wrong with me.

Depression must be fought and even though the pain is sometimes dreadful and every day seems harder than we think we can face, we get through it somehow, and your wife and kids love you despite the AS, so don't even think they'd be better off if you weren't there!

And welcome to KickAS!

Cheryl

Both dogs and men have irrational fears of vacuum cleaners

hi,
i have no help in the way of how do you get the doctors to listen,just keep on at them!!!!!!!
But i know exactly how you are feeling as i was diagnosed a year a go and its still sinking in.....I am 22 years of age and have too thought about ending my life as you feel worthless but i'm sure your a very good dad to your children and a lovely husband to your wife and not everyday you feel this bad.......you have the good days and bad days......make the most of the good ones........
From what i can see from being on here as i am a newcomer is that you have to think positively,i know it's hard as i find it hard myself.......you are not alone........As for having a hardworking life,well it about time you took it easy!!!!!!!!! i have no idea what my future holds for me,just take it one step at a time and see what happens.......you may be surprised!!
Take care of yourself and hear from you soon :0)

Dear Shawn:

We each suffer with AS to a different degree, but I reached a severe crisis state when I was about your age. The problem is that I knew what to do, but instead decided to put myself in the care of doctors. There is only an advantage in being diagnosed early if you can get proper treatment as a result. Unfortunately, in the case of AS, most of the accepted medical treatments make the condition much worse.

You have a severe chronic illness that requires extreme lifestyle modification; there is no single magic pill or quick cure, and whatever healing you do achieve is totally up to you. If you can begin when you are still young, you will avoid much pain, damage, and heartache.

With the help of this site, I have unraveled my own AS Gordian knot. Perhaps some of what I have found out can help you, and you are welcome to write to me directly at aureq@inreach.com .

All the best to you,
John

Shawn
From your post there are some incontrovertible facts. (Lawyerese for things so obvious only a Doctor could mis them) You are in a lot of pain and they (Docs) can't even have the good sense to ackowledge that. When a Doc. says you're overreacting or "its all in your head" and AS is in your family tree than someone needs to shake that tree until something hard and heavy falls out to clobber the Doc.
Whatever your discomfort (Doctor word for PAIN) is then you need help and you are not a hypochondriac. I never understood the great cause for celebration when the DOc finally gave this beast a name. They essentially kept treating me the same way, throw some NSAID's my way and hope they'd shut me up. For you're own health management assume as it seems uyou have it is AS cause if its not the changes you make will probably halp any arthritic condition and keep hunting for answers. Change your diet. THis is advice from one who frimly believed that something so simple could only make a minor change. I was wrong for the FIRST time in my life on that one. ANd keep comin' here. Good luck in your search for answers.
BTW the title to your post beckons follow up lyrics from Don McClean, "they're not listening still, perhaps they never will"
That old Vincent could throw a nifty painting together and inspire a good ballad or two. Adios till later.


stevec-they also serve who stand and wait

Rhr that thanks for the reply, I had an MRI or 'Bone Scan" if thats the same thing, it didn't show anything other than uptake in T10 and T11. They suggested disk patholigy as degenerative, but nothing more than that. They still tell me I'm affevted by arthritise but to a degree that is within what they call norms. so they expect me to sit and wait for more DMG to occur before they seem to want to acknowllage a problem. meanwhile you know the kind of pain I'm feeling, and we both know I probably havn't even come close to seeing the worst of it. I watched it my whole life, I know whats comming, in a way i wish i didn't.


....Shawn