Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Beware...contains long-winded unbridled rage

Do you ever feel like it's a hopeless battle we're fighting? I've had one doctor since I was 14 who was very supportive and believed in my symptoms and what I said. I had an appointment yesterday to go over the final result of all the tests and consults I had. Now I feel like the only doctor who has been consistantly willing to help me has turned on me. She told me that since there were no findings on the tests there were simply no other options, the fact that my hips snap and I can't walk and my back hurts too much to lie down is a mental problem and I have to have the pschiatric testing and deal with the results she is sure will show up on that. The rest of my unexplained symptoms fall under this category as well. Luckily my Mom won't make the 5 hour drive on snowy roads to take me to the only psychiatrist in the state they think is qualified to do the testing. The person they had me talk to the first time suddenly doesn't know this area as well as they thought since I'm obviously NOT mentally stable as she said.

My poor Mom is having a very hard time dealing with this, she cried through my entire appointment because they are so blatantly and openly refusing to take me seriously. I wish I could just make it all go away for her sake. When my Mom asked if AS was still a possibility to watch for my doctor said 'not a chance, because the HLA-B27 was negative.' (???) The fact that everyone in my extended family has autoimmune conditions, especially arthritis... inconsequential. (This just in: now my 16 y/o little brother may have RA too). Every last member of one branch of the family had bilateral hip replacements by age 60 and some were born with dislocated hips (including my father)? I guess it doesn't apply to me.

Oh yes, I just have to "buck up and start walking" (verbatim quote) because there is absolutely no reason that I can't. (Did I mention the searing pain and percussive noise that eminates from my hip joints before they pop and throw me to the ground? Did I mention the legs so numb that I can't stand on them or even move them? I can look at my foot and tell it to lift, and it just doesn't. That's why I went for help. This all hinders walking just a tad...). She will continue to give me pain meds until I "work through this" but I can have absolutely no assistance of any kind getting around since I'm perfectly capable of walking. BUT I'M NOT! I CAN'T! Don't they get it? I CAN'T! That's why I, an obsessively straight-A involved and busy student, dropped the semester early, came home and went straight to the hospital. I CAN'T! I need help! Why won't they give it to me? How can I continue my life if I can't walk and no one will help me fix it? I can take the pain, but I need to function! She once again suggested taking next semester off. What, should I just take the rest of my life off? I know I need to stay positive and not give up, but when am I really going to CRACK? (Then that psych testing will be called for...).

Tomorrow I'm going to call an accupuncturist I saw in high school. I might see a different physical therapist because I'm getting nowhere at the moment. I'm trying to get in to the UC-Davis pain clinic in Sacramento (they can do their psych testing there) and my Mom said she will take a week off and fly down to help me. GOOD GRIEF, won't anyone listen to me? IT'S NOT ALL IN MY HEAD!!! I just don't know what to do.

Thanks for the vent.
'Erie :-(

Hi there Miss Erie!

Sounds like I will have to ship you that Star Warsblow up doll Gianna has so you can put that doc's name on it.....and give it a good whallop!!!
Sorry things are so tough right now kiddo.....hang in there!

Boy......all my docs ALWAYS ask if there is any arthritis in the family!! that's a real bummer......glad your Mom is there for you....and I'm here for you too!!

Hope things look up for you soon.......big hugggggg heading your way



Toodles!
Angie

I'm sorry to hear what you are going trough.
I have mcuh the same problem, but at least now I think they are listening to me, after 5 years of " it's all in your head". problem is i tried the whole time and listened to them, and now I need physo cause then CAN see the damage, and my right leg IS twisting out of allignment. But thses are things that the PT is trained to notice and find. Still they are not jumping on calling it anything. But I'm sure when I go back tomorrow and tell them I had an inflamitory bowl attack(requireing IV at the emergancy), it'll make there heads spine. It sounds to me like your sill young, like myself they will continue to be ignorant, untill there is unmistakable damage, to the point of the worry of malpractice in not treating you. Pain to doctors seems irrelivant, not one of them has offered me anything more than T3's and I'm resistant to them anyhow.I can't work anymore, just looking after my 2 kids all day is draining. If i do too much, I spark a flarup, my father has the same condition. still "nothing wrong with me though", well other than an unexplained partialy fused or " ceased" spine, as for the thoughts or your future, well....... i'm having those as well.
Don't know what to say, other than find another doctor. If you only have 1 near you then..... mabey move to a relatives for a while in the city if you have one. Till you get a DX and then go back home and recieve treatment based on that DX. But sounds to me like your gonna have to wait till they see harcore damage, and till then you have to feel pain and discomfort, and when the damage appears, you'll still watch them blame it on everything other than AS. My father only got as far as advanced Degenerative Disk Desease. He gave up really, but still they don't ever want to be the one that says AS. Tha's for sure. It's all messd up.

Nothing wrong with your head, just the system in relation to anything like AS

Sure hope you don't have to wait 20 years for a DX like I did - - a DX for AS, that is. After two years of unexplained pain and joint swelling I did get a DX of atypical RA which saved my sanity at the time. My suggestion? Do what I did. When a so-called "specialist" in Boston (where people here go for the expert opinion) referred me to a shrink, I went -- because I knew I wasn't batty and the pain was real, I thought the only way to convince anyone else was to go see the head shrinker and let him tell them it wasn't my head that was the problem. So I did, the shrink said I was doing fine emotionally, especially considering what I'd been through with the medical community, nothing wrong with my head, and then arranged with my GP (who still believed in me) to have the top rheumy in our end of the state (not a Boston guru, someone in western Mass.) have a look at me, and he's the one who DXed RA, based partly on family history, partly on my joint swelling - - not on my back pain, but because I had an ankle that kept ballooning up. I don't know if I'm positive or negative, never been tested, back when I got the RA DX women didn't get AS

Cheryl


Dogs never have to worry about hangover remedies

'Erie,

What can I say? I was so hoping that something would show up in all those tests. I was told as a teenager that all of my back pain was in my head and I needed to get more exercise. It was rough and I still don't have any respect for the medical community. Hang in there, girl. Eventually you will meet a real doctor. One who realizes that hip pain is in your hips and not your head. I'm glad you have a great mom, she sounds like a wonderful person. My mom believed the doctor, after all they are right next to God, right? Everytime she saw me putting my hand on my low back, she would say, you just need more exercise. Until my hips were involved, I managed quite well with most things in life. Made a few adjustments, but my hips weren't involved then. But when my hips started giving me problems, I had to find some medical assistance. That wouldn't have happened without the help of my eye doctor. Nothing showed up in the first x-rays of my hips, but at least I have a dx. I'm praying you get a dx soon. Until then, hang in there. Come here often, we may not be able to do much, but we care about you, and you are welcome to vent, whine, and complain as much as you need to. Talk to you later.

Hugs,

Cindy

I'm so sorry, Erie, and I truly understand how you feel, and what you're going through! I'm B27 neg as well, and it took me 25 years to get my AS dx! During a lot of that time, I had so much self-doubt, loss of self-esteem and confidence, I honestly began to think maybe it WAS all in my head, if no-one else could find a reason for it all!!

Don't give up though! My dx eventually came via a clinical psychologist!! The person I was absolutely dreading going to see, as I thought she'd have me certified!! However, she was so lovely, and so sympathetic, and the first person in all those years who actually took the time and trouble to talk to me, to ask questions, and to LISTEN to me. After 2, hour-long sessions with her, she told me that she thought I had AS, advised me to see the rheumy I'm now seeing, and who dxd me in less than 30 minutes!!

Good luck. Take care, and please try and get a 2nd, 3rd or 4th opinion! As many as it takes.
(((HUGS)))
Sue

Oh Erie, I wish there was something I could do make you feel better -- or knock some some sense into those thick-headed docs!!!! Maybe a 2 x 4 would help...

It seems like more and more the docs decide to write off pain as something that you have produced "in your head" when they just can't figure out what to do to help you. And that is a shame.

I hope you get some answers soon, Sue took the words right outta my mouth -- go get a 2nd, 3rd, 4th opinion! Until someone gets it right!!!!!

I'll be praying for you,

Christine

Some days I feel all rung out...

Erie,

What is unbelievable is the treatment your medical "professionals" are providing. Is this shrink their golf buddy? Has he had a tough year? Stock portfolio not doing well? Could he use another patient or two (your mom is next) sent his way to pick up the economic slack? :)

If figuring these guys out were only that easy and straightforward.

I probably can't offer any helpful advise from Salt Lake you and your family have not already considered. I will offer that I for on would be out on the snow packed roads - one straight out of town. I'd look for a new rheumy with some AS experience (HLA B27 neg be damned!) in Missoula, Great Falls, Spokane - however far it would take to get a reasonable dx and management plan.

I can offer sympathy, maybe empathy is a better word. Leaving school was tough enough, now this makes that seem like cake. I cannot imagine the stress and frustration you and your family must be feeling. I feel sad that this is happening, and hope that you can resolve it properly without missing to much more school.

Please keep us posted, and hang in there.

Deanpaul

Erie,

As a former President once said, "Ah feel you' paaaaayn"

I have zero respect for the medical community right now. ZERO. NONE.

I have the back of a 70 year old. I'm 26 for God's sake! I have fusion at the top of my neck that I have been told by MORE THAN ONE doctor is typical of Juvenile AS. I have the SI pain.....that started just this year! I have a family history of back bain and neck problems. I have damage on a bone scan from my neck to L5 (I'm sure something is going in with SI joints as the tops of my hips are constantly sore and stiff now.)

But, the medical community thinks there is nothing wrong with me except some congenital defects. All my bloodwork is so FREAKING normal. EVERY time. I'm HLA B27 negative also, PLUS I'm female, so that means I can't have AS, right?

Doctors assume that since I don't go to the gym every day for two hours of high-impact exercise, or that I wasn't a sports star in high school or college, that I don't exercise enough.

HOW are you supposed to exercise when GETTING OUT OF BED every day is a major chore????

I've already been accused by a SUPPORT GROUP (not this one, thank God above!) of drug seeking behavior! I've been accused of making it up. I was told by a doctor that I'd better be thankful I "don't have something serious like RA or AS."

Needless to say, I also, feel at times that myabe it IS really all in my head. I understand where you're coming from!

Rox
http://www.geocities.com/artisan1998.geo/index.html

Yes, Erie, it is does seem hopeless sometimes.
I know that after I got the "it's all in my head" answer a couple of times, I am a nervous wreck now when I go to the doctor, and heck that's one of the first things they look for.
The only thing you can do is take it one day at a time. I'm really glad I didn't have the internet when I first got sick, because then I would be going through what you're going through. Since I didn't know anything about arthritis, I couldn't question what the drs told me.
I've heard that sometimes a psych can help you get a diagnosis, but gosh the stigma of being labeled is just so darn hard on anybody.
Wish I knew what to say to help you feel better, but there's nothing. I go in March, and that's when I'm laying on my PCP what I have. I've been truly fighting the dr establishment for 12 years, so I'm about due for a dx. But who knows, my osteoporosis went to osteopenia...maybe my SI and spine degeneration disappeared in the last 12 years too.
Unfortunately I'm redheaded and I look a lot younger than my age. Age is a critical factor for doctors.

I mentioned to someone else about seeing a chiropractor. Not for manipulation purposes, but sometimes they can do testing that might not have been done already. They need the business and are less likely to just throw you out the door. They would be more willing to go that extra mile, so to speak. If I get no answers at the VA, that's my next step.





Susie