] Need to rant......

[Guest guest]

Sorry you and your child and family were put through such hell. It is

difficult to diagnose a child's spondyloarthropathy disease. Fifty years

ago they told my parents that " no child can hurt that way " and told them to

take me to a psychiatrist. It took until I was 27 years old before an

allergist taking a complete physical put the different symptoms together and

diagnosed me with Reactive Arthritis/Reiters Syndrome. Even after a

definitive diagnosis many doctors wanted to question that diagnosis and

usually ended up saying I need psychiatric help instead of medical help.

Here was the problem: When I was in a flare up and in great pain I was

depressed and anxious because no one was doing anything to help with the

inflammation and pain. When I didn't have a flare up I wasn't

depressed/anxious. Later when they started treating me for anxiety (with

pediatric doses instead of adult level doses) related to high levels of

pain, I didn't get depressed.

My new rheumatologist did the complete exam and blood tests this past month

and talked about Inflammatory bowel disease and Behcets Syndrome but after

looking everything over, including my remarkable ReA symptom history he

concluded that the original diagnosis of Reactive Arthritis (ReA) was

correct and he will now treat me with Humira because due to a kidney problem

I can no longer take NSAIDs. He told me that within a few weeks I should be

able to give up even the Tylenol/Darvon (propoxyphene) I am currently taking

to handle higher levels of pain. I'm optimistic. I've never had anyone

want to give me the new biological before. But at 61 and now prevented from

taking my standby Ibuprofen I have to look at something else to control

things. It's been years since I've had to look at anxiety meds or

depression meds as a solution. Once I figured out what was going on and

controlled the pain levels with Tylenol and Ibuprofen and the occasional

Darvon I've done really well. I'm healthier now than I was in my 30's and

40's when the ReA was so rampant it left me bedridden with orders to get

braces on my legs to keep me from falling down and a wheelchair for long

walks. I didn't do it because I knew the flare-ups would subside eventually

and I would be back to a resemblance of normality.

Good luck everyone dealing with ridiculous doctors who don't really listen

to us when we talk to them. We are the best 'test' results they have for a

proper diagnosis if they will listen to us tell them our symptoms. But they

usually don't. I had one doctor tell me to shut up and he would tell me

what my symptoms were based on his findings. I didn't ever go back to that

b..

Ray Neal in Seattle