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Confused and looking for answers
#277150 01/26/17 03:31 PM
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alamode Offline OP
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I will try to make a long story short. I have had knee pain as long as I can remember. My parents chalked it up to growing pains so I never complained much. In my teens, my ankles began to swell off and on and my Achilles felt too short for my legs. When I was 19, I got pregnant. In my last trimester, my legs hurt so bad I couldn't put weight on them.I had pain in the tendons that run up my shins, they were red and swollen. The xray revealed arthritis in my knees. For years I have had varying degrees of pain and swelling. About 6 years ago things got really crazy. I started having chest pains and trouble getting a deep breath. My heart rate would jump up to 150 bmp just putting on my shoes. After many tests and docs the conclusions was I have electrical issues with my heart. My hands started doing crazy things. The back part would swell up where you couldn't see my knuckles. I would drop things because they would feel weak all of a sudden. My fingers look like sausages. Then my back joined the party. I woke up and felt like my back was broken. I couldn't move the pain was so intense. after the xray the ER doc assured me it wasn't broken. She leaned in really close with one hand on my shoulder and said "I really, really need you to promise to follow up with your PC". She put me on prednisone, mobic, and muscle relaxers. I did as she asked and went to see my PC. She looked at my hands and feet and told me I have RA. She tested my sed rate since I didn't have insurance and it was cheaper. Normal. Then I started passing blood. My gastro doc was sure I have Crohns because of the inflammation in my intestine. I have constant diarrhea and intermittent intestinal pain but all he found was GERD. I've had blood in my urine for 5 years. Urologist found a tumor in my kidney. I have abnormalities with my optic nerves and probable glaucoma. I feel like all of this crap is related somehow.
Fast forward to now. Finally got into a Rheumy. Back pain is moving up my back, neck, shoulder, elbows, hands, jaw....
She said she didn't see swelling in my hands, my back is mechanical pain though she never did an xray. All labs are normal except my ds dna is elevated but she doesn't think it's related. She saw swelling in my achilles and did an MRI hoping to find inflammation at the insertion to make a diagnosis of spondyloarthritis. MRI was normal, joint xrays are normal. She put me on Refalan and said we will follow up in 2 months. The only time I haven't hurt all over it when I was on prednisone. I am 38 years old and my 65 year old parents get around better than I do. How do you cope when you know something is wrong and you keep hitting road blocks?

Re: Confused and looking for answers
alamode #277151 01/26/17 03:42 PM
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You keep going, till you find a dr. that believes in you. It took me 15 yrs. and many drs. to get going on treatment. My Rheumy, said any inflammation in your body, isn't normal. I didn't have the inflammation markers either.
Find another Rheumy, that will listen to you.
In the mean time, get your pain under control, that will help.
Even go to a pain management dr.
Your kidney's sound like mine, but I've had blood in my urine, for over 50 years.
If your Rheumy just looks at you, without touching your joints, run alway. They don't have x-ray vision, to just look at your joints, and say there's no swelling!

Re: Confused and looking for answers
alamode #277152 01/26/17 04:40 PM
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Agree with cindyd. Don't take no for a answer. If not RA, or spondylitis, then tell your Dr to tell you what it is. I had my Dr tell me it was just the aging process, people get old and it hurts. Listened for years, years of pain I could have been treating. Good luck

Re: Confused and looking for answers
alamode #277155 01/27/17 12:25 AM
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I'm so sorry. I have been there. Every single bit of my blood work came back normal. My X-rays and MRIs were clean. I've been seeing this guy for a year and last week he diagnoses me with Undifferintiated Spondylitis. He had treated me with prednisone dose pack (and s had my ortho doc) and it had helped tremendously. You just have to keep fighting. You have to make them listen to you. I left the doctor one day and spent the rest of the day crying bcause I felt like no one believed me. Get a second opinion if it will make you feel better. I did. Keep fighting. Only you truly know your body.

Re: Confused and looking for answers
alamode #277156 01/27/17 02:41 AM
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It took me over forty years to get properly diagnosed, because I accepted what the drs told me. Keep fighting until you find the right doctor who will take the time to find the answers.


Age 61. AS dx'd at age 57
HLA-B27+,iritis/uveitis periodically since 1970, diabetic
Meds. naproxen and muscle relaxer(as needed)

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