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Another dead end dr visit


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#1 ez62

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Posted 17 June 2008 - 05:06 AM

Well just returned from the new general practitioner and he was such a nice young man but seemed pretty out of the loop as far as autoimmune things go. He said scleroderma just affects the skin. Go figure!
Anyway he ordered my bloodwork redone (its been a year) He said if your ANA tests negative, theres no reason to test for other antibodies cause they would all be negative...is that true? he said I could see my heart beating down to my navel cause I'm thin...he didn't even look at it...the thing is, I've always been thin and it never used to do that.
It seems with stuff like this something bad has to happen before you finally get a diagnosis. He did say he believes either my preganacy with my son or all the contrast dye I was given 2 years ago has triggered all this. That was kinda validating and I do agree with that...finally a doctor admitting that pumping all those nasty chemicals directly into my vein might not have been a good thing! Thanks for you ears!

#2 Karenlee

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Posted 17 June 2008 - 05:17 AM

ez62,

Sorry to hear you didn't get very far with this recent visit. I'm not too familiar with your condition, but it sounds to me like you 1. Need to find a more competant general practitioner and or 2. Need to get to a Rheumatologist.

It frightens me to no end that a doctor (especially fresh out of med school, since you said he is young) can actually beleive that scleroderma only affects the skin. That would be a huge red flag for me to find someone else.

Again, I don't know your history or condition, so this is just what I think from reading your post.

Karen



#3 Gidget

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Posted 17 June 2008 - 05:31 AM

Ez62,
Time for a new doctor. I would get a copy of my bloodwork and move on to a rheumatologist for a true evaluation. If there is not one that specializes in sclero in your area, then choose one that specializes in Lupus. Good Luck. Gidget

#4 Guest_Sadie_*

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Posted 17 June 2008 - 05:57 AM

EZ62,
I agree with everyone! Time to find a new dr as soon as possible.
Sadie

#5 Shelley Ensz

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Posted 17 June 2008 - 07:38 AM

Hi EZ,

Please keep in mind I have no medical training at all and verify everything I say with a reliable medical source.

It's my understanding that there is a major artery in the stomach area and thus it is perfectly normal for people to see their heart beating there, and most particularly if they are thin. And if I recall correctly, you've had complete evaluation for heart issues in the past.

If you still question that this is normal, if this is a significant change since your last heart evaluation, if it seems to be growing larger, or if you wonder if it is an aortic aneurysm (or anything else), you can always see a cardiologist, of course. Or, pay a visit to this doctor for a complete physical (probably a good idea anyway) and ask him to please look at it during the physical.

If he is saying this could all be caused by contrast dyes, is he saying or implying you have Nephrogenic Systemic Fibrosis or Nephrogenic Fibrosing Dermopathy? That would be very serious, indeed; sometimes, even fatal, as it occurs in patients suffering from kidney failure.

Scleroderma, in particular, is diagnosed based on clinical symptoms, not blood tests, so the blood tests can be a rather moot issue. People cannot be diagnosed with scleroderma based only on blood tests, neither can blood work always confirm scleroderma. You could take in a scleroderma symptom checklist (PDF) and show your doctor how many apply to you; keeping in mind that some of the symptoms are quite common and not likely to lead to a scleroderma diagnosis.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#6 Snowbird

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Posted 17 June 2008 - 01:41 PM

Hi

I'm in full agreement with the others. I strongly suggest you find another doctor as well as a Rheumatologist (they are knowledgeable in autoimmune diseases although not all of them are up to date on scleroderma).
Sending good wishes your way!

#7 Shelley Ensz

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Posted 17 June 2008 - 01:53 PM

Hi EZ,

I certainly get muddled and confused a lot, between so many of us and our different medical situations. But (correct me if I'm wrong!), didn't you say you have a rheumatologist and a diagnosis of UCTD, which I mentioned in another thread is Undifferentiated Connective Tissue Disease (not "undiagnosed" CTD), which is, in itself, a valid diagnosis.

If that's the case, I'd just look to the primary care doctor for regular care, not for diagnosis, as that is being handled by your rheumatologist, and raise the more complex issues with your rheumatologist. And in which case, you wouldn't need a new rheumatologist necessarily but you may want to consider finding a board-certified internist with an interest in autoimmune diseases.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#8 ez62

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Posted 17 June 2008 - 02:37 PM

I did get a diagnosis from the rheumatologist which was vasculitis, based on a pathology report from the dermatologist. When I went back to the dermatologist, he said it was peri vascular and it wasn't vasculitis, like the rheumatologist read the report wrong. So I kinda lost faith in the rheumatologist, and plus didn't like the fact that he seemed uninterested in connecting the dots with my other symptoms.
My husband went to this general practitioner and said he was a good listener so I thought I would give it a shot, but although being a good listener and a nice young man, it was unsettling to realize I know way more than he does about these things...mostly just from hanging out on this board. My symptoms include extreme skin burning and tightness around eyes and mouth, skin around mouth actually noticeably changing and kinda curling in, left hand tendons all thickening on the palm side and difficulty using and straightening that hand, moreso each day, red tight skin on forearms. I guess the fact that I see my abdomen pulsating so hard when it never used to is unsettling to me cause I know it never did that and I'm concerned something internal is being affected. They saw something that really alarmed them with my aorta, on a cat scan almost 2 years ago, then deemed it nothing. But now I am wondering if it was maybe the start of something going on there.
So the bloodwork the rheumatologist ordered a year ago will be repeated and the general practitioner is referring me back to the rheumatologist I guess. He said he is a good rheumatologist and that I shouldn't let the misread path report stop me from seeing him again. So kinda going in a circle here. I appreciate you all so much, and I do apologize for taking up your time as I am undiagnosed. Thanks again for all your help, you are a wonderful group -Eileen

#9 Karenlee

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Posted 18 June 2008 - 01:31 AM

Eileen,

Glad to see you aren't giving up on a diagnosis although I totally understand your frustration. You just want someone to say "this is what you have" and "here is our plan of action", but unfortunately with this disease that is usually not the case.
Maybe if you go back to the same Rhumetologist and leave still feeling uneasy about his knowledge and or results, you can find a different one. Don't ever settle.
I had a similar experience with a dermatologist and knew from the moment I left his office that I would never go back to him. Just keep plugging away until you hit the right one.

Good luck.
Karen

#10 Gidget

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Posted 18 June 2008 - 06:11 AM

ez62,
I still say find another rheumatologist otherwise you are going to keep spinning around. My first rheumatologist/internal medicine guy could not diagnose me -- kept telling me to take Advil although I kept telling him something was wrong. Finally, I went to a hand doctor thinking I had arthritus and in 2 minutes he said I had sclero, that I would never see him again, and that I needed a rheumatologist. So, I saw a different rheumatologist who did the nailbed and ran the blood tests and PFTs and came up with the diagnosis. Went back to the first rheumatologist and told him. He had nothing to say-- and the worst part is he is one of the Top 10 rheumatologist's in CT! So go figure. In any event, I got lucky and was able to start treating the disease instead of spinning around "taking ibuprofen". Sorry to sound so harsh, but in the end, you need to find the right doctor for you and if the first Dr. can't read lab reports, what else can't he do or what else will he miss. Good Luck Gidget