Should I question what the doctors say?

by Crystal
(Orlando)

This is a bit of a long story but you have to hear it all to understand what I'm going through.


I am 26 years old and when I was 13 I had surgury for scholiosis. I had a spinal fusion and went back to dancing (my childhood passion)the doctor said that was all the physical therapy I would need. After feeling the bars rub against my shoulder blades for a few years and being on pain medication I chose to have them removed at the age of 17.

Since I was still dancing the docs didn't put me in PT again, little did they foresee that same year I would be diagnosed anemic from the surgery and shortly after have an accident in class that would trigger "Juvenile RA", now preping for college and having to quit the only thing I'm good in (dance) because my rheuthmatologists first answer to me of what should I do was "well, if it hurts don't do it", I have lived that way ever since.

The next summer my doctor sent me for a glucose test and we discovered Hypoglycemia, which I treat only with dietary change. Now after changing jobs multipe times due to flare ups, pain, or lack of pay to cover medical expense my current doctor is thinking I might have periferal neuropathy because my morning stiffness is numbness too. It manifests not as pain so much until I am moved where my body comes to a very painful realization that it's all still there (do any of you experience it like that?)

After 9 years of blood testing I still do not have a RA factor which has to be the most annoying issue. Is it common for JRA to never progress to have a factor or should I be questioning the diagnosis.

Thanks for your time.

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Nov 05, 2010
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Fibro, RA
by: Sherry




After having Fibro for years, my last blood test came back RA also. I also have the numbness, the first time was oon the side of my face head and neck. It was the strangest feeling that lasted all evening. I have seldom had a day that I do not have severe pain. I too had to quit my passion
Cosmetology. I had worked for 38 years, many days I would fill rubber gloves with ice chips and put them on my sholders to help the pain of the trigger point, that was causing pain to my whole arm and hands. Shampooing was very hard at the last because my fingers would get stuck and I could not move them so I would have to pull them to stop them from sticking straight out. I had been on 53 meds in 5 years and nothing helped...my hands swelled so badly and my muscles in my arms are always swollen..always a sed rate.

Aug 13, 2010
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doctors...
by: Anonymous

There are, without a doubt, some very good doctors. However, please - everyone, remember that they are just people who have gone to university for a long time. Many of them don't really search for a diagnosis if it isn't something they aren't familiar with. I know of two people who have had to end up finding their own diagnosis - later verified by tests in the hospital - after doing their own research on the internet! I have suffered for years with "mysterious" symptoms. I have been accused of being a faker, a hypochondriac or psychologically disturbed along with various diseases because no tests made any sense to the Drs. They didn't recognise "a pattern" Now, after over 10 years things are coming together...tests are making sense...I have more than one illness! No one thought of that. Trust your instincts. Change your doctor. They are just people too.

Feb 20, 2010
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I to have been told that I have RA and test are negative
by: Anonymous

Crystal,

I to after having surgery was told that I had RA.
And my Ra test are negative. I to have been asking Dr.'s questions with no answers just that I have Ra. One Dr. did say that I could have had a reacion to medications during surgery.

For the last month I have been going to a Dr.(MD)
that has been treating me with herbal Vitiams and herbal medication, for the swelling and energy levals.So far it has helped. I believe that our diets have all to do with our health. I just hope I'm not to late I am 52 years of age. Read all you can find and research because herbs are medicine to. But I do have more energy and less joint swelling in just 4 weeks, I am not well yet but I can tell that I am a lot better.

Jun 24, 2009
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IN PAIN DAILY
by: JANET

DO YOU THINK SHE COULD POSSIBLY HAVE FIBROMYALGIA
ALSO.
I HAVE BEEN SUFFERING FOR YEARS WITH STIFFNESS AND PAIN , DOCTORS SAY FROM OSTEO. AND FIBRO.
I HAVE BEEN TESTED FOR RHUMATOID , BUT THY SAY I DON'T HAVE IT.
I QUESTION IT, BECAUSE MY JOINTS ARE SO TENDER.
IT IS OFF AND ON DAILY, FROM MY ELBOW TO MY FINGERS, TO MY BACK OR KNEES, ALSO FEET.
I NEVER KNOW WHAT THE DAY IS GOING TO BRING.
I HAVE TO TAKE PAIN MEDS TO GIVE ME A FAILY GOOD DAY. VICADEN, IS WORKING WELL, BUT I HATE TAKING IT EVERY DAY.
JUST BARELY HIT MY KNUCKLE YESTERDAY, AND I WAS IN TEARS WITH PAIN. WHY? I WISH I KNEW IF IT IS MORE THAN ORTEO.

Sep 16, 2008
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I always tests my own theories when a diagnosis seems off.
by: Susan

Hi Crystal, I read your story with sadness. I feel your pain having to give up the thing you love most in life. Worse is not knowing if you can believe the diagnosis.

Often times symptoms mimic one disease and we get a diagnosis only to find years later that the original diagnosis was incorrect.

Reading your story made me wonder if it's possible that you are suffering from gluten intollerance.

Have you ever removed ALL Gluten from your diet for a period of 30 days? To remove all Gluten you must realize that it is often well hiden inside prepared foods and even small amounts must be avoided to test this out properly.

Gluten intollerance is very difficult for doctors to recognize. Now I'm not saying that's what the problem is, but I do believe it would be worth testing.

I know people who were close to death before finally realizing that it was simply gluten intollerance causing all the havoc in their body and once this once change was made their body returned to a healthy state.

As for your question about the RA factor not showing in your blood work, this test is not completely reliable. Some people test negative, with all the symptoms while others test positive with no symptoms.

I'm hoping others with experience living with JRA will comment.

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