Comments on: Hysterical Symptom Diagnosis, Part 1

By: Janette Sands

Janette Sands — Wed, 04 Apr 2012 01:50:24 +0000

My father had a fractured pelvic ring that was never diagnosed until the Orthopedic Specialist was able to see the new bone growth on an x-ray 6 weeks after the fracture. He was in horrible pain for several months, unable to care for himself and uncomfortable in any position.

By: Kelly Young

Kelly Young — Tue, 03 Apr 2012 01:02:34 +0000

In case you had not already found any, there are some stories here about my medical adventures advocating for my own children’s health. Here are some of them: http://rawarrior.com/how-much-does-patient-testimony-matter/
http://rawarrior.com/who-are-e-patients-a-simple-explanation/

By: D.

D. — Mon, 02 Apr 2012 15:20:50 +0000

My mom took a fall a couple of years ago while working and landed hard on a concrete floor. She was about 65 years old at the time. They did xrays and said she was just bruised and banged up a bit. When she still had trouble walking they suggested physical therapy. After doing that with no improvement for several months her regular doctor, not the one in the ER clinic, finally decided to have the Xrays repeated. As a result, the THREE FRACTURES to her pelvis were discovered. Two of them were very hairline and the other was not. It was the one that she felt the most. Everyone doubted her and not the xray or the original ER doctor and radiologist. It amazed me. She worked like that for months because she trusted the docs and didn’t want to disappoint her employer. They actually changed her position at work so she could sit down and work. It was obvious by watching her walk that she was in pain. But, everyone listened to that xray and the doc more than to the patient.
I have had similar situations with myself and this “inflammatory arthritis” that as of yet doesn’t have a more specific diagnosis. It is very hard to articulate the pressure you feel to produce symptoms that “fit”. Labs “ok” so you must be “ok”!
I also went round and round with a beloved pediatrician regarding two of my children. We still use him as our children’s doctor, but my blind trust is no longer in tact. One child was eventually diagnosed with Cystic Fibrosis (kinda a major deal) and the other was finally referred to a pedi rheumy after my frequent and repeatedly bringing up her symptoms. I finally bought a pediatric rheumy’s book (“It’s Not Just Growing Pains”) and diagnosed her myself! Then I sent a long email to our child’s pediatrician. His emailed reply was a bit condescending. I eventually got my referral he had been hesitant to give me. Our daughter was diagnosed with Hypermobility and Raynaud’s. The pedi rheumy also recommended her to the pain management clinic at her children’s hospital. Over a year later she is much better, sleeps better, and knows how to manage her hypermobility to decrease her pain. The first time I mentioned my daughter’s blue colored legs to her pediatrician she was about a 18 months old. Over the years she would complain about her knees, her achilles tendon, her elbow, the pain in her red feet if she stood still too long. I brought everyone of those things to her doc. And, he did nothing. I think one of the major reasons he didn’t want to refer her to one of the three pediatric rheumalogists in our state was that he didn’t want to be thought of as not knowing his stuff and referring her “unnecessarily”. It helped that I had a personal connection with the pedi rheumatologist. I think the doc’s knowledge of my connection helped. But, my daughter still needed his referral to be seen.
Didn’t mean to go on and on here. Just wanted to relate that I have most assuredly learned to be an advocate for my children and not blindly follow what a doc says just because they are a doc!
Thanks for your site! It’s the one I always go to for good and solid information! It has helped me in many ways! God bless!

By: Kelly Young

Kelly Young — Sun, 06 Mar 2011 16:05:52 +0000

Leslie,
Thanks for your comment. That doesn’t take away from the story at all. I think it strenghtens the point that believing the patient is the only safe way to go. My friends xrays were not repeated soon enough and she was doubted. I’ve seen it in other cases and recently read statistics about how often films are read differently when they are re-read, even by the same radioloigst. I think the Elizabeth Cohen’s book was one source of that info and I I heard some stats on that at ACR last fall too. People assume an x-ray or scan is always “black and white.” I know I did. But it’s more subjective than that, which I’m sure you knew already.

By: Leslie Martin

Leslie Martin — Sun, 06 Mar 2011 12:17:00 +0000

Not to take away from the point of your story, but I work in radiology and there are types of fractures that are considered “occult fractures” and they won’t show up on the x-ray until 7-14 days have passed, if at all. If a fracture is suspected clinically or the radiologist is suspicious, they will usually order repeat x-rays after a week or 2 if the patient is still having symptoms.

By: Alice

Alice — Mon, 19 Apr 2010 02:45:20 +0000

My rhuemy recently had my hands x-rayed and told me there was no damage to my hands after 4yrs. which would make him *say* I didn’t have RA but as he looked at my hands he said *that’s RA*. When he looked at the huge nodule on my right elbow he said *that’s RA*. His only reason for doubt was b/c of the x-rays and the fact that I’d had HEP C. I didn’t get HEP C until after RA and I got it from an EGD and Colonoscopy center that is now shut down b/c 100′s got HEP C and AIDS. My hands look awful,the x-ray tech pushed my hands down flat for the x-ray, I had RA BEFORE Hep C. He can’t deny the Ra in my neck that I’m having surgery on 4/29 so :razzmad: ! This *HYPOCHONDRIAC* leaves you all with prayers for success with your poisons and painfree days and nights and may the Lord give You Peace and Rest. :rose:

By: Aiko

Aiko — Sun, 20 Sep 2009 16:26:22 +0000

Thanks, Kelly. My RA taught me to trust myself. Growing up in Japan, I was taught to respect and not question doctors. The example of your friend confirms my new belief that doctors, medical technicians are human and technology can fail. But the pain is real. The pain tells us that something is not right. I have become an advocate for myself. I need to speak up and question the doctor when I know there is something wrong with me. I hope your friend recovered nicely.

By: Lee McAlilly

Lee McAlilly — Fri, 18 Sep 2009 20:19:52 +0000

Hi Kelly!

I recently found your blog on Rheumatoid Arthritis, and I wanted to reach out. I’m the blog coordinator for EverydayHealth.com. We’re currently recruiting people to write a weekly blog post about their various health conditions and I thought you might be interested. 

 Everyday Health has over 25 million monthly unique visitors to their website, and there is a lot of potential exposure and traffic to come from blogging with the market leader in online health information. It’s also an excellent platform to promote education and awareness of issues associated with RA, and any cutting edge research or advice.

 Let me know if this is something that you’re interested in and might like to talk more about.  I enjoyed reading some of your old posts, and I think you have a unique perspective that Everyday Health readers would love for you to share.

 Thanks so much!

  Lee McAlilly 
Blog Coordinator, EverydayHealth.com
lmcalilly (at) waterfrontmedia (dot) com

By: RAWingman

RAWingman — Fri, 18 Sep 2009 17:50:41 +0000

Given the history of repression and subjugation of women, it wouldn’t be surprising if many actual problems arose as a result of that: depression, anxiety and who knows what physical problems. I’m sure the diagnosis of “hysteria” was in part a (perhaps partly subconscious) effort to keep women in their assumed place. My mother wanted to be a doctor and was told women didn’t do that. So she had three kids and struggled with mental health her whole life …

By: Liz Ball via facebook

Liz Ball via facebook — Fri, 18 Sep 2009 16:08:56 +0000

excellent blog Kelly. You speak the truth. I can’t tell you how many of my friends were told it is in your head by a couple of doctors until they found a doctor that took the time to repeat everything and took in all of their symptoms as a whole. You have to keep on keeping on with finding a dr. that will repeat everything and will take in your symptoms as a whole and not just rely on what the tests say. That goes for any disease. I know it is a pain to keep looking for and changing drs. but we have to. We have to in order to get the proper treatment so our bodies stop damaging themselves. I have noticed you write about the facts of RA and I write more about the emotions of RA. We should team up lol.