50 years to get the correct diagnoses

General Blog
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I have gone back to my childhood to when I was 12 years of age and when I had aching joints which were diagnosed as growing pains

In my twenties I was treated for inflammation and bouts of aching joints. Back problems, Thyroid underactive diagnosed. My joints always got worse after a virus or infection.

In my thirties I had a few bad bouts and couldn't hardly move with of aching joints. Suspected Rheumatoid Arthritis Back problems

In my forties, told it might be Lupus after abnormal blood test results. I was diagnosed with Polyarthralga by a Rheumy. No follow up treatment. Back problems. L4-5 Mid forties after back surgery. L4-5 S1,S2,S3 fused with screws and plates. Did not eliminate all the pain, but I could walk much better. Plaque Psoriasis. Bouts of aching joints. Diagnoses with tendonitis, bursitis and inflammation. Bed ridden with pain at times. Nails lifting

In my fifties, continuing with all the same symptoms told it was Osteo arthrities. Bad flares of inflammation and bed ridden for days on end at times. Symptoms worse and in hips more back problems with several in the T's area and L3-4 herniated. Late fifties a Rheumy diagnoses OA even though I have massive amount of P psoriasis and under dermatologist. Thyroid blood tests abnormal re done test back to normal no treatment. Insist on furthe tests.

In my sixties it turned out to be PSA. After stubbing my big toe and the pain didn't go away. Saw a Podiatrist. Planter faciitis and recognised my toes swollen toes as PSA. Confirmed by another Rheumy. Joints worse and bad bouts of joint pain. Progressed to continual and debilitating pain. Multi nodular Goiter, Hasimoto Thyroiditis. Still no treatment.

I am waiting for an appt to see anothr Endocriniolgist about my Thyroid as it affects my swallowing and my voice box.. Suspect I also have Fibro but prooving that will be hard. I am finally on Embrel and getting some relief. I had to fail three types of treatmenents first which took two years.

I have always eaten good healthy food and kept myself physically active. I still swim in summer, but the winters are getting harder as each year passes.

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Thyroid that feels like you got walnut in way of swallowing often is thyroiditis which goes along with auto immune problems you have had. I got it in my late 30's and my doctor asked if she could bring in other doctors to check it out since it is rare.

But my rheumatologist said that odds are eventually my thyroid is going to stop working...90% range is what he saw in his practice....he was in mid sixties when i started seeing him....stayed on another 5/6 years than retired....he taught so he trained my next rheumatologist. This was in 80's and just was extremely hard to fine any.....i am still having a hard time finding any in my area.

So you have to be at least in your 50's ....maybe older...so it was before Aids hit and a lot of studies started opening up doctors eyes about auto immune diseases in late 80's. My brother, had auto immune issues with joint pain, nodules in his lungs, kidneys stopped so was dialysis..he passed at age 34 in 1980's and the did not really know what he had except auto immune.

I just been diagnosed with SLE about 3/4 years earlier and we had very similar problems only his were much

worse. Now there are over 80 kinds of auto immune diseases and new ones being discovered every year so I am not at all surprised.

I do know that they could have told if you had Rheumatoid Arthritis of not in 80's since they specific tests that i took to find i did have it. I also wonder if you were sent to Rheumatologist and Endocrinologist way back than plus a Geneticist as both he and I were....which did help them to identify some things we had very clearly and specifically. I do know for us....we both were lucky to have Kaiser who sent us to top specialist like at Stanford or USF...all over the SF Bay Area and Sacramento areas plus farther to try and figure out what we had.

I have about really 3 different diseases at least and suspect that i do not have fibro but another auto immune disease that mimics fibro but is bit different and seems to fit my symptoms so once i find a rheumatologist up in this area ....i live out in boonies and is nice for peace and quiet but bad for specialists lol!

Winters for us...my husband who has arthritic ankles that barely work...are just getting way too hard on us. We have snow part of winter and just kills us to shovel it or walk on it...like walking on sand. But we both try to move and walk dogs on nice days. I love to hear how Embrel works.....side effects are to me a bit risky so i am nervous about trying it but have gut feeling new doctor is going to put me on one the newer drugs.

I also go extremely lucky that i had a most wonderful team of doctors at Kaiser who all loved outdoors and hiking ...back packing.....as i did too. So all of them did all they could to help me be able to keep going.

Doctors up here...are just minimal and so i paid heavy price by their lack of good care....finally one messed up so bad..rheum in town hour away....which was closest....is afraid i am going to do law suit for malpractice so he refused to see me or let me see his partner.....knowing very well there are no others except for hours away..nice creep of man! lol

Well i am sorry it took so long...but i am not surprised....just sorry you had to suffer. Have your doctor check for thyroiditis ....and i hope Embrel helps....please let us know. best wishes it does and it just shows...how little doctors really know about our bodies....

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Wow. a lifetime of pain all missed by a bunch of bungling doctors. I'm so sorry you had to go through all of that. I wonder, if you'd been treated early on, if things would be any different for you now? Oh well, spilled milk and all that....Hang in there....Maybe now they can at least help you with pain relief. I hope too, your endocrinology issues are finally addressed.

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It took me nearly as long and your story is similar to mine is a lot of ways.
Started with breakout at 13 of psoriasis accompanied by lower back pain that is there 24/7. So many doctors over the years that I lost count: Rheumatologists that refused to see me, neurologists, back pain specialists, etc… and all of them referred me to psychology professionals (I passed every exam they threw at me to the point they asked if I was honest because I was scoring too well on the tests).
The sad fact is that health care is not a right in this country. Paying a premium for insurance does not guarantee that the doctors we pay for are obligated to treat us let alone see us.
Be very careful about seeking out the Fibromyalgia diagnosis. It is so easy to test for if the doctor knows what he is doing but you run the risk of them refusing to treat your arthritis because they can blame the FM which really has very little treatment options. I am trying to get my Rheumy to stop saying its just the FM and aggressively treat the PsA. The last visit he was jamming his thumbs across my upper back and his little finger hit my shoulder joint which sent me jumping out of my seat and he exclaimed “Hah! you see you have soft tissue pain I knew it!” Now mind you this is after he admitted that doctors can not tell the difference between FM pain and arthritis pain. The next Rheumy is a 3 hour drive away or I would change doctors, and he is the third doctor to admit this to me. As it is I had to commit to doing just that and say I was leaving before he would agree to give me the same dose of Remicade I was on with the previous doctor. He had cut it by 1/4 and was making me go twice as long before treatments. I was back to being bed ridden and unable to even change my cloths on my own.
This disease is so incredibly debilitating and its so exhausting to deal with it day after day. Then add to it how isolating it is to be so ill. If not for all of the members of this site and the love and assurances they provide, I would be entirely lost. Everyone has given me the courage to stand up for myself and insist I be heard and treated.

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I have never considered my life as a life time of pain. I have just got on with life the best I could and pushed myself when I had to and suffered the exhaustion and the aggravated pain in my joints just to cope.

So many good things along the way, my two sons now adults. One now with Psoriasis which he has controlled with diet along, so far. Most of my life I have lived well and done so much, more than most.

Its is now that I am feeling the long term effects and how much my ageing has to do with I have no way of knowing but I do suspect it does impact on me.

I have been through the situation many times when I know the doctors may have thought that it was in my head or I was bunging it on, when I wasn't. My attitude to that was send me somewhere if it is in my head, because if that will fix me I am more than willing to do whatever it takes. That was always enough to end that conversation.

My thyroid is a multi nodular goiter. Where there are 7 nodules there. The doctors do not seem to be concerned. I will pursue it further.

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Fifty years, Bella! Poor you. And I thought at 20+ years, I waited a long time for the docs to figure me out.

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Isn't it ridiculous that so many of our ailments would not be as bad as they are or even present if we had gotten a timely and accurate diagnosis. I swear my PsA kicked off after years of a thyroid condition being missed.