UNDIAGNOSED OR MISDIAGNOSED

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UNDIAGNOSED OR MISDIAGNOSED

A forum to discuss problems and issues relating to the lack of a proper diagnosis or misdiagnosis.

Members: 7
Latest Activity: Nov 5, 2013

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I will be seeing the Ruematologist for Medication for PsA for the first time, What can I expect?

Started by notanymore. Last reply by notanymore Nov 5, 2013. 2 Replies

After thirty years of fighting this disease and three years of seeking a diagnosis and treatment I am finally scheduled to visit the reumy in December. I am very excited, as up until now I have been…Continue

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Comment by Dini on November 3, 2013 at 2:39pm

Hi...I went undiagnosed for 5 or 6 years. I'm not sure how long exactly. First I was diagnosed with Psoriasis and the Dermatologist didn't mention anything about PsA or the possibility.

Then I think within 6 months I woke with a swollen finger. At first both me and my GP thought I had injured my hand, which I believe I did...but that's where it all started. Finally after complaining for close to a year....my GP sent me to a Rheumy.

The first Rheumy I saw was kinda weird but I let it go figuring I would find out what was wrong with my left hand ( finger ). He seemed to experiment on me....a cortisone shot into my knuckle...put me on Plaquenil but never gave me any answers. So I stopped seeing him and stopped the medication. I didn't realize what was going on because no one was telling me anything. I thought it was silly for me to be seeing a Rheumy since my joints didn't hurt.

After about 5 years of doing nothing...my finger was obviously damaged but I let it go. Then the pain started again. This time it gradually got worse and radiated through my hand. My GP sent me to another doc and that doc told me I needed a Rheumy.

I had read online about PsA and knew it's symptoms were closest to mine but thought I shouldn't diagnose myself. Maybe that was a mistake.

Finally...I had my GP find me another Rheumy. I started to see the new Rheumy in September 2012. Things still went slow. The mtx make me crazy with side effects to the extent I was afraid I might lose my job. Then I started sulfasalazine instead but it only helped for a few months. Then May 2013...the flare up started. The PsA progressed and was taking over and went from being in one finger to being in both hands and both feet. My right hand now the worst.

I still feel angry that it went on for so long and I could not get help. I am angry at the dermatologist for not mentioning that this condition existed so I could have been more proactive when the pain and swelling started. I'm angry that the first Rheumy didn't diagnose me. I feel that the extreme pain and frankly the disability I have had to endure this past 6 months never would have happened if the medical community did their jobs.

I think I might have finally found my magic mixture of meds for now but i know it could be temporary and the thought of biologics scare the heck out of me. I don't want to trade one problem to end up developing another.

I'm sorry some of you have gone so, so long with a undiagnosed or misdiagnosed PsA. It's crazy ! I've definitely learned to be my own advocate through dealing with this stuff.

Comment by notanymore on October 6, 2013 at 4:53pm

Hello everyone. I see there are many others out there going through the doctor shuffle.  Good to know I'm not the only one feeling this ridiculous. trying to get them to coordinate one thing! Got my diagnosis from a study screening because my insurance didn't cover a Dermatologist even though I was fully pustular on ninety percent of my body and dying. I was like this for three years and ended up on the crazy ward because i had the audacity to cry in front of  my doctor.

Don't pull all of your hair out just yet. Thirty years of this crap and I'm still not believed by my GP because she's a clinical resident and has only seen me three times. She sent me to the ER last week for an MRI instead of starting a heavy duty anti-inflammatory. Of course the Er doctor did just that and the MRI of course was a waste of my insurance. It's in my eye. My eye doctor told them, treated it and sent me to the GP for a biologic start up because I cannot do steroids. Still waiting after four month to get into the reumy and now I have to go to a neuro as well YUK!!! Can I hang here with you and bitch?

Comment by matilda783 on October 1, 2013 at 4:24pm

Hi Dee,

I'm in the process of attempting to see if I really have PsA.  I wasn't getting any answers from my Rheumy and no x-rays of any kind ever with her wanting me to jump from Methotrexate to Enbril.  And with no explanation of any blood tst.  and my PCP has just gone thru the roof because I dared to switch to another Rheumy.  Hang in there.  we can get thru this!  I'm just blowing my stack from now on if I run into this again.  There are Patient Advocates available in all hospital settings but I think there needs to be someone for doctor's offices also.  Can you go contact another Rheumy?  Or another Derm?  

Comment by Dee35 on July 14, 2012 at 4:40pm

Been on methotrexate for over 4 months now for ps and now i swear my psa is getting worse, more swelling in hands and toes. But my rhuemy doesn’t think i have psa, she thinks its fibromyalgia which i have had for 20 yrs now. ps for 40 yrs, and i never had joint paint or swelling up until about 5 yrs ago on and off. Now it’s worse than ever. Not sure what to do now. my skin was clearing with the first dose of 15 mgs (6pills a wk) then after 2 mos my skin got worse so my doctor raised it to 7 pills wk. not sure why my joints, hands and feet are hurting more....will this ever end....i quit my job of ten years... 2 years ago... it will be in sept...because my pain and fatigue was the worst i ever experienced.  My fatigue feels more tolerable now with a little help from tramadol and lortab. But now I can’t do what my career is...office admin...because of joint pain.  I am not getting disability and can’t work....my dermatologist said "why do you need to be diagnosed with psa?"  Because i asked her if i should see another rheumy as mine wont give me a diagnosis of psa.  dont you need to be diagnosed in order to stop the deformity. blood tests and an xray of hands 2 yrs ago should negative for other arthritis. should I have an MRI of my hands instead?? any help is appreciated!!!

 

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