Advocates on Steps of Congress 2013
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You Think it Won't be You

"What is the lesson in seeing 6 different rheumatologists (and 2 dermatologists) before getting diagnosed? There is still a long ways to go on educating doctors on what systemic sclerosis is."

jenn dodd.JPGOne moment you are perfectly normal and active.  Next thing you know you are tired and not well.  That is how illness works.  You think it won't be you than one day, it is.  You're young, you're healthy; the world's your oyster.

I was 29 when I started to get tired and feel unwell.  I didn't have insurance and didn't think it was anything anyways.  Just getting older.  Some people slow down earlier than others right? 

When I was 30, I got insurance and went to the doctor.  By then I was on a beta blocker for heart palpitations.  I had developed severe joint pain and swelling.  The swelling was mainly in my hands.  Blood tests were run and I was sent to a rheumatologist.  I had had raynaud's since I was 9 (I don't remember it being a problem earlier) and a positive ANA since I was at least 18 (when I saw my first rheumatologist who never examined me).  The doctor thought it was lupus, than RA, than gave up and told me I needed to try a different rheumatologist.  Scleroderma was not brought up. 

So I went to rheumatologist #3.  He told me it looked like RA, so we were calling it RA.  I was happy to get a diagnosis and at the time, my symptoms fit RA well.  But due to distance, long waits in the waiting room, and the doctor wanting me off my current treatment, prednisone which hardly worked, and not willing to give me anything at all, I went looking for doc # 4.

Rheumatologist #4 said she would start me on treatment, but wasn't sure if it was RA.  I responded first to methotrexate and then to enbrel.  I was told my swelling wasn't RA.  Knowing that some other patients with RA had been told the same thing, it didn't bother me.  I developed new symptoms.  I ask my doctor what caused them.  She said she didn't know.  I researched them and came across scleroderma.  But I didn't have any skin involvement, and thought that can't be right.  By that time I had gerd which I took prescription medicine for, and I also had the typical swollen fingers.  Time passed.  Again I developed new symptoms.  Again I ask my doctor, and she said didn't know.  Again I researched online.  And again, I came up with scleroderma.  I was surprised to find that the same disease met my new symptoms as well.

Feeling like I needed someone that would know scleroderma better and not realizing that another regular rheumatologist could be stumped. I found rheumatologist #5.  He said maybe you just have controlled RA.  And didn't dismiss my questions about scleroderma.  He wasn't sure what I had, but the medicine was obviously working, so he didn't change a thing in treatment, to which I was grateful.  I had also joined inspire where I was in touch with some super educated fellow patients.  So I asked my primary to order an echo and pft.  I also asked her for a referral to Stanford.  In the mean time, while waiting for my Stanford appointment, I did the pft, echo and skin biopsies.  I started hearing probably scleroderma and maybe scleroderma as I saw new specialists.

At Stanford, I met rheumatologist #6.  There, I was finally diagnosed by Dr. Lorinda Chung and Dr. David Fiortino as having systemic scleroderma all along.  At that point it wasn't exactly a surprise, but I was thankful for the official diagnosis. 

I now see rheumatologist #5 and #7, finding a doctor closer to me than Stanford, but still extremely knowledgeable about scleroderma.  Both doctors are willing to work together for my best care.  There are still questions.  Do I have mild pulmonary arterial hypertension?  What is the best treatment for me?  But my doctors and I are working towards answering those questions.

What is the lesson in seeing 6 different rheumatologists (and 2 dermatologists) before getting diagnosed?  There is still a long ways to go on educating doctors on what systemic sclerosis is.  The first dermatologist quoted me out of her old text book what scleroderma is.  It was outdated.  I would encourage all doctors who could have patients with scleroderma from the primary care docs to the specialists to take the time and do continuing education on scleroderma.  Even if you learned the latest, most up to date information in school, that doesn't mean things haven't changed.  This isn't about who is or isn't a good doctor.  This is about making sure you are the most informed you can be to better serve your patients.

Sclerowhat? at the doctor office should be a thing of a the past.  Both doctors and patients needs to be as educated as they possible can because together is how we move forward.

 

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