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Dr. Frustration Same Ol' Same Ol'

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I have read some of the stories on the ISN site, & that has helped me feel better about yesterday but man was I angry after that appt!!! I read the new ones that were just posted too, it sure helps in dealing with all this stuff to hear other stories. But I hate what others have had to endure.


I had to switch from my Internal medicine primary care physician back to my old office & I saw him for the first time yesterday because my podiatrist wrote a letter recommending Mayo or something. Well, the first thing he said to me when he sat down was, "Well, I have looked through your file & you've seen just about every specialist & other than a slightly high RF your labs are fine. What are you going to do when I send you to the Gastro & he doesn't have an answer for you either? Then he said that he's going to send me to a psychiatrist for (whatever it is you call people who believe they have something going on when they don't, he use some word other than psychosematic or hypochondriac) & recommend anti-depressants! THEN, he said, I mean, I see the raynaud's in your hand so obviously not that but the other stuff.


So, his point being that only the things he recognizes are real but not the others?? Then I asked him if Raynaud's can make my knees turn blue & his resonse was, "Blue knees! Now that's one I haven't heard associated with raynauds!" as if, I'm clearly making that one up & then when I asked about my nipples too, & I told him I couldn't find any explanation other than nursing moms which I'm not & he said that's true, as in, I couldn't possibly have blue you knows because I'm not nursing!!!!!!


He just completely wrote me off, then I recalled that I had seen his wife a couple of months ago about the swallowing problem & the painful muscle spasms & she suggested that since there wasn't a diagnosis for them & I passed the swallowing test (which was liquid & it's tiny pieces & fleghm that don't go down) so I should consider counseling & anti-depressants.....He came into the appt with a preconceived notion about me due to his wife's notes a couple months ago I'm sure.


He DID mention Sclero & looking into a couple of other lab tests that he didn't see on my lab work but I felt like he was snowing me on that as well, I could be wrong but what other ones are there besides the scl-70? I had a complete ANA panel I thought....we'll see.

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I am so sorry to hear what a frustrating appointment you had! GRRRRR!!! Can you see a gastroenterlogist without this particular doctor's referral? I still don't have a diagnosis other then "undifferentiated connective tissue disease", but the GI stuff was one of the first to hit and hit hard. My tests typically come back showing no problem or only a slight problem. However, at one of my last rhuematology appointments (after the GI tests came back "normal") my doctor said, "It must be really frustrating to know something is wrong and yet have the tests come back normal". Wow! I was blown away that he finally acknowledged how frustrating that is. At the same appointment he told me it didn't matter what the tests showed that he knew something was going on AND the GI stuff was the hardest to get under control.


If there is anyway you can change doctors (and doctor's office since his wife doesn't sound any better), I certainly would!!! And, if you can get a GI consult without his referral, please do it!


Warm wishes,


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Dear love,

Wow, I'd am furious for you and with you! I have been so lucky to have been taken seriously by my doctors and my supportive family. I really can't even imagine just being blown off like that. I hope that when you finally do get a diagnosis, you send a copy to this jerk doctor!

Meanwhile, I think Cindy's advice is excellent! Change doctors if you possibly can and get a GI consult on your own, if possible!

Is this jerk doctor even a rheumatologist? Are there any specialists in the field of scleroderma anywhere near you? If you could get in to see a specialist, it would surely help.

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Hi love!




With a disease like this we don't need a healthcare provider being our enemy, we need an advocate and someone to understand us.


Frankly, being the stubborn person I am and also being in the medical field for years, I would tell you do get another provider. Having someone that you can relate to and someone that will take you seriously is the most important thing right now.


Big hugs to you!



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Hi, again, Luv!

I have been cut off twice as I tried to write to you, but will give it one more try!

You have a right to be taken seriously and I hope you can find a doctor who will do that. Please keep trying to find one who will and don't give up.

Do a lot of reading and then, perhaps you can simply ask for some specific tests.


Mary in Texas

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