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If I Had A Dollar For Every Missed Diagnosis!

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10 replies to this topic

#1 americanmike


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Posted 23 April 2007 - 11:36 AM

Just wanted to see how many people developed scleroderma after being told they were ok, or they weren't sick, or it wasn't scleroderma, etc.

I know there's a ton of stories out there. I'd love to hear details, and I think this is useful to those who are being minimized by their current doctors.

I have UCTD and am more worried than my doctors about evolving to Sclero. I have joint aches, abnormal capillarie nailfolds, Gerd, positive ana, and two hard spots the size of peas beneath my lower lip (started 8 month's ago). I have been at this 1.5 years and have had many other symptoms come and go.

I check my blood pressure every couple days, I monitor my urine with at home tests, and I monitor my lung function every 6 months.

I believe that unfortunately the evidence from this board suggests that if you don't monitor yourself there's a good chance you could suffer damage before you impress your doctor.

I'm really just shocked by some of the doctors comments I read about. The one about not treating limited sclero was a doosey on Ced's post.

Michael in Florida

#2 janey


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Posted 23 April 2007 - 12:29 PM

Prior to getting a diagnosis by a rheumatologist I was seeing my primary care physician. At 49 I asked her why I was in her office every other week with a new problem. She said it was "aging"!!!! A month later I developed pneumonia and was sent to a pulmonary doctor who did nothing but give me a CT every 2 months. He did congratulate me on my weight loss on each visit and completely ignored the comment: "I'm not trying to lose weight. I can't swallow, so I can't eat!" By then I had Raynaud's (which he witnessed), I didn't have the leg strength to step up onto the examination table, my hands were curling and the skin tight (just to name a few). I ask for a bloodtest and he refused. I finally snuck in, literally, to see a hand doctor and she took one look at my hands and said "You have an autoimmune disease!" She filled out the form for bloodwork and scheduled me an appointment with the rheumatologist. He diagnosed me on the first visit! Of course by then, I already knew what I had. It had been long enough and I had developed enough symptoms to figure it out. I never saw the primary care physician nor the pulmonary doctor again!

Big Hugs,

#3 Clementine


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Posted 23 April 2007 - 12:54 PM

I had Raynauds, GERD, Telangiectasias, Anemia and positive ANA 5 years before anyone ever mentioned Scleroderma. I was tested for Lupus and did not have it, and that was that. I did not get a diagnosis until lung fibrosis had occured and at that point I was so sick I was hospitalized. Looking back, I also had weird things such as random rashes on my body and face and carpal tunnel syndrome. I would not say I was misdiagnosed, just not diagnosed with anything.
I wish the doctors would have sent me to a rheumatologist but none did. The primary care physician sent me to an internal medicinist and that was that until I was REALLY sick.

#4 summer


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Posted 23 April 2007 - 02:33 PM

Hi Mike,

It was only by chance that I went to see my family doctor. In December last year I woke up one morning to very tight/stiff/sore achilles tendons in both feet, I ignored the situation until February this year. I again woke up to a sore ankle right in the bone I had seen something on Oprah a few days before about someone who had died from bone cancer and one of the symptoms was a sore bone to start of with.

I then went to see my family doctor who did an x-ray (which was normal), he then said there was nothing wrong with me and that maybe I strained it accidentally and to rest. He then got up and opened his door (trying to tell me that the visit was over), I still remained seated in my chair and then I said to him "you don't think it is bone cancer"?.
He shut his door and sat down and said why did you ask that, then I told him about what I saw on Oprah.
He took another look at my foot and asked how sore it was and I said "very".
He then said o.k we shall run a battery of tests . That's when the blood tests came back with an ANA of 1600 Centromere pattern. He then referred me to a Rheumatologist who told me that she thought I had Limited/CREST Scleroderma,
which was then confirmed with Clinical symptoms and a +Anti-Centromere as well.

What I am trying to get at is doctors are in so much of a hurry to get you in and out of their office to see the next patient. If I had of just walked out of his office when he had gestured that the visit was over and had excepted that maybe their was nothing wrong with me I don't know how long it would of taken for me to go back and see another doctor again! I am usually one of these people that it takes a lot of pain for me to take an asprin/panadol or even to see a doctor.

Kind Regards

#5 WestCoast1


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Posted 23 April 2007 - 05:21 PM

Hi there Mike,

Yes it frustrates me too when some doctors dont "deal" with autoimmune disorders because they dont generaly lead to a surgery (wich is the main money maker in that buisness), but I really appreciate the ones that do have a heart.


#6 barefut


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Posted 23 April 2007 - 06:56 PM

Oh Mike, don't get me started! It's late and I don't have enough time.....

For too many years I was seeing a doctor whom I was not happy with. (Hey, I said it nice!)

Anyway, one of the "best" of the many mis-sed diagnoses was when I told him of my pain and stiffness and loss of range of motion and he mumbled something that I swear he just made up and told me that some people are just stiff after sitting for awhile, it's not a big deal. That was the last straw with him.

Also, he diagnosed my Raynaud's as Buerger's Disease, which is most prevalent among middle aged, Middle Eastern, men who are heavy smokers. Last time I checked I was an American, non smoking, woman with a "probable lupus" diagnosis. Now wouldn't a doctor worth his degree at least consider Raynaud's first since Raynaud's piggy backs lupus?

Well, I could go on but it is late for me. Maybe I'll add more later.
Take care all,

#7 LisaBulman


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Posted 24 April 2007 - 01:17 AM

Hi Everyone,
Ok, don't hate me. I went to the dr because my fingers were turning blue. I had no idea what what going on. My dr. said raynaud's, ran some blood work and said come back in 1 week. I went back and at that time said, "You have raynaud's, and your blood work came back abnormal. You are at risk of developing scleroderma and or lupus. You may get both, one or neither. If you notice any changes call me immediately." Within one year I was back in his office with swollen fingers and really sore all over. He diagnosed me on the spot and then sent me for thorough testing.
I guess I am one of the lucky ones who got a really quick diagnosis.

Lisa Bulman
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#8 Gidget


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Posted 24 April 2007 - 05:12 AM

My doctor is an internist and a rhuematologist. I had Raynaud's and thought nothing of if. Went to the DR. this year -- told him I felt horrible and there must be something wrong -- he did a physical -- results came back perfect and he told me to advil -- hands were aching, stiff, swollen -- so I went to a hand dr who diagnosed sclero on the spot and told me I would never see him again. Went back to my doctor who argued why I didn't have sclero -- found a new doctor who ran the blood tests and did the capillary tests and gave me the diagnosis. Gidget

#9 debonair susie

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Posted 24 April 2007 - 09:02 AM

Good thread, Mike... this has been brought up in various threads how so many of us have gone through what you... and others are experiencing <_< . May I ask... before I get started... are your symptoms being treated? If not, then that would be a good question to pose to your doctor.
I went a total of four years before I was diagnosed... despite the $30,000 racked up in diagnostic tests (I had a $5,000 deductible on my insurance, because I was "healthy" back then :P)!
Even though I went to a rheumatologist, she wasn't coming up with "anything"... I was so frustrated and to the point I felt I had become a hypochondriac... symptoms and all :( I had "the flu" for over a month when I went to my internist and she told me it wasn't the flu, but it was over her head and sent me to a gastro, who was able to diagnose me :unsure: Now, twelve years later, I continue to have diagnoses made, long after lingering symptoms.
You're absolutely right, in that we must be proactive with our health care... the more we are aware and continue to stay as informed as we can (through each other and research, etc...we should do okay). It seems there are several doctors who are so "text book", that venturing outside the box and look beyond, isn't even within their scope... as far as I'm concerned, that's quite sad. However, in their defense, there are many diseases that just aren't very easy to pin down... scleroderma being only one of many. .. Good luck to all of us, huh?!
Take care,
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#10 kramer57


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Posted 25 April 2007 - 01:21 AM

In my case, it was achalasia that was misdiagnosed. When I started having trouble swallowing and acid reflux in 1994 my doctor at the time told me it was psychological (in other words, "it's all in your head"), but she sent me for a scope anyway. The doctor who did the scope told me to quit smoking and lose 20 lb. and the reflux would go away.
Four years later, after losing about 40 lb and dropping two jeans sizes from not being able to swallow, and still having lots of reflux, I referred myself to a surgeon to ask about getting surgery for the Acid Reflux - I still didn't know anything about achalasia. Luckily my surgeon did! As a routine process before GERD surgery he does manometry, a test that showed that I have NO paristalsis in my esophagus - aka achalasia - that's why I have trouble swallowing, it's not just in my head. So I was able to finally get correctly diagnosed and had the surgery to help me swallow better.

#11 luvbnmom3


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Posted 25 April 2007 - 07:27 AM

I think Lisa's comment about being diagnosed quick sums it up good. Her refering to being diagnosed with-in a year of a Raynaud's diagnosis as being lucky & quick goes to show how incredibly long it can take!

My misdiagnosis at this point was Raynaud's (not having it) The immunologist my primary care physician sent me to even though I asked for a rheumatologist (research I'd done said so) anyways, Immuno guy said, definetly not raynaud's, blood is pooling in my hands too long, don't worry about it & maybe if I'm so cold I should move to a warmer climate & the blue fingers is just my new normal."

Then my primary care physician sent me to a Cardio who said my fingers were clubbing & also witnessed the Raynaud's (& diagnosed it) sent me to a rheumatologist who confirmed the Raynaud's. He also said possible occult connective tissue disease & nailfold capillaries are irregular with minimal dilataion.

I haven't been to the rheumatologist in a long while but with the swollen fingers (look like sausages almost) & feet I've had in the mornings (at least mornings) & the skin getting tighter & tighter on my hands, I feel it by my eyes (especially in the morning when I rub my eyes, skin doesn't move much) & my face when I yawn & the skin on my lower back when I bend over. Swallowing problems, dry mouth & sore throat, drinking water like it's going out of style, dry eyes, etc. Anyways.... I don't think a diagnosis is too far off... in the mean time, I just do what I can that I have read is proactive in slowing things down. ANA was negative back then too but I don't think I will let him run another, if that's possible, so a diagnosis isn't forced onto my records.