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Bad bad doctor

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#1 Lyn


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Posted 19 September 2009 - 05:23 AM

I saw my new rheumatologist yesterday and he pretty much dismissed everything other doctors have told me, saying there is no such thing as fibromyalgia and I do not have a scleroderma esophogus no matter what the 2 gastroenterologist have said. He said it was sleep troubles and my weight. I am devastated by this experience, and feel dismissed and belittled. Even thought both gastro doctors told me never allow surgery on my gut for my weight, this doctor wants me to have bypass for weight loss. He also wants me to have a sleep study, which I also think is a good idea. That is the only thing he said that made any sense and my own primary care physician already decided that. How do you deal with such an experience?

#2 Shelley Ensz

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Posted 19 September 2009 - 05:40 AM

Hi Lyn,

Oh, you win some and lose some. Have you considered a scleroderma expert yet?

I remember one choice rheumatologist who told me there was nothing in the whole world wrong with me, except that I was "overweight, out of shape, and your feet are falling out of your shoes!"

I do wonder what they tell their skinny customers with possible scleroderma, don't you? Maybe it is, "Oh, you are rail thin, your clothes are hanging off your body, and your shoes are falling off your feet!" Maybe they are told to just eat more and they'll feel better?
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#3 ladyhawke


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Posted 19 September 2009 - 07:29 AM

Oh Lyn,

I'm so sorry for the experience that you had and I can relate somewhat to how it made you feel. When I first started this and couldn't walk, I had people help me into my doctors office, into the room and back out to the car.....my legs and feet were swollen out of shape, I was in so much pain and I was just so sick, and this jerk looked at me and said "Well Lisa....you ARE 50....it's menopause". I told him I didn't want his premarin that he was writing out the script for and he looked at me and said "Well then, suffer"..... a week later I ended up in emergency where another doctor actually did all the blood work and said polymyositis. A month later they added scleroderma. Needless to say, I no longer have that doctor. It still just blows me away.

I don't know where you are, but here (Canada) we have to have a referral to go to a rheumatologist. Can you get a referral or go to another rheumatologist? I guess they have good and bad in that profession as well. What a shame! Don't let him intimidate you and above all, don't give up. It's awful to think that we have to fight so hard when we are so ill. Keep us posted.


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

#4 Sheryl


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Posted 19 September 2009 - 11:47 AM

You girls sure look thin in your avatars. All thin and sleek in everything from PJ's to formal gowns. They are much better than pictures of the real deal. Lyn welcome to our forums. You will fit right in with all of us. Ask your questions. If we can help in any way we will do our best to prepare you for futured visits to your different doctors.
Strength and Warmth,

Sheryl Doom
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#5 Amanda Thorpe

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Posted 19 September 2009 - 12:18 PM

Hello Lyn

Well if you haven't had a dud doctor you ain't lived, that's what I say. :lol: Many years ago I saw a neurologist, for migraines, I waited months to see this guy just to be told to try yoga and keep taking pain killers, I laughed and walked out. Consider it a rite of passage.

If you haven't seen a sclero specialist consider it because they're best placed to add symptoms up to the correct sum total of scleroderma. Equally if they say it's not sclero you could at least have confidence in the answer being correct.

Take care.
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#6 Snowbird


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Posted 19 September 2009 - 03:53 PM

Hi Lyn

I'm sorry to hear that. It's certainly disgusting...but unfortunately it happens sometimes and always to the wrong people!! I've met a few along the way too...so uneducated this day in age and so scary :o :o !! Whatever you do, don't let it stop you...turn that waste of time into spitfire energy instead to lead you on the hunt for a knowledgeable doctor/scleroderma specialist that has an open mind in autoimmune diseases...and if it were me personally, I wouldn't stop looking till I found one that I thought was good and knew what he/she was talking about.

Fibromyalgia (FM) is definitely a diagnosis too...and I hope you don't let anyone, especially like that convince you otherwise.

On your other note, if you and your primary physician agree on the sleep study, I'd ask him/her for another referral to get that done too...I personally wouldn't waste my time nor give that guy the satisfaction to let him do it...I'd guess that he'd probably tell you next that it's all in your dreams, ugh!

Take care and I hope you keep us posted too.
Sending good wishes your way!

#7 enjoytheride


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Posted 19 September 2009 - 05:45 PM

My favorite one was a doctor who nagged me into doing breast self exams even though I told him repeatedly that it was very hard to do with dense, lumpy breasts. Sure enough there was a new, largish lump. Back I go to have him tell me to wait 6 months and see if something changed.

Told myself that you can't fix stupid and got another doctor.................
I'd go ahead with the sleep studies since you feel it will be helpful Maybe use the time to check out someone that you feel will work with you better?

#8 Jeannie McClelland

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Posted 20 September 2009 - 03:27 AM

Mine was "You have asthma, if you just get rid of your dogs you'll be alright." No testing had been done~

I don't have asthma and I still have the dogs! :lol: Don't have the doctor, though.
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#9 betty32506


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Posted 20 September 2009 - 06:05 AM

My pulmonary doctor did a lot of tests. Most were positive. He said see a Rheumatologist. I did, she said she didn't know anything about those tests. Pulmonary doctor said change doctors. New doctor did test and about the only one that wasn't positive was RA for which I am most thankful. She made a point of telling me I did not have lupus. I had the butterfly rash on my face to the extent people would ask me if I had lupus. Rheumatologist wrote my general practitioner I had lupus. Time passes, she said I have Sjorgens (I agree there). Later, your test are all good. Then I was switched to someone else in that group. She said I didn't have anything but referred me to an ENT which I will see shortly.
Betty :huh:

#10 smac0719


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Posted 20 September 2009 - 07:01 AM


I am sorry to hear about your experience and can sympathize with your visit. I saw a "premier" rheumatologist who told me I didn't have an autoimmune disorder while in the same breath told me I had automimmune thyroid disease. Really?? :blink: I knew something was wrong with me so I continued seeking answers. Even though you will run into some in the medical field who will make you want to give up or test your faith, keep seeking answers. Best Wishes.
I may have Scleroderma, but Scleroderma doesn't have me!

#11 Lyn


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Posted 22 September 2009 - 08:09 AM

Thank you everyone. I was diagnosed with the sclero in 2002, and second opinion agreed, though my rheumatologist said undifferentiated autoimmune at the time. I was diagnosed with fibro back in mid 80s, and I have had 4 doctors since and all agree. I know what I have. I just could not believe what I was hearing, or he would have been stunned himself! I will move on, see my primary care physician and start again. Thank you all for being so supportive. I have not been here as often as I could be, but I visit and read more than I post. You all are great!

#12 Penny


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Posted 28 September 2009 - 03:14 PM


I think we have all had experiences with doctors like that, and like everyone else has said, it is best to look for a specialist and try to forgive the doctor for his insensitivity.

I was told by an ER doctor once (within 10 seconds of him entering the room and without even coming within arms reach of me) that my chest pains and high blood pressure and pounding heart were all from stress and he should know, because he suffered from panic attacks. I got up and left immediately and went to another hospital, where they actually hooked an EKG up and saw I went into v-tach. (Just a little heart attack... very mild, but not 'stress')

Another time I was told that my ANA was negative for everything autoimmune, but that my Hashimoto's Thyroiditis still required treatment (I see I am not the only one with this confusing bit of wisdom). Then a lip biopsy came back positive for Sjogrens, but the rheumatologist wanted to dismiss that as well because the ANA was negative. (The battle on the phone could be heard in the waiting room as my old rheumatologist and Oral Surgeon went at it.)

I know it can get very frustrating, but you will find a doctor that will not only listen but who will also fight through the confusion with you... I thought it would never happen for me but it finally did!