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Is This Disease Really That Uncommon?!?

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#1 Tammy


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Posted 17 August 2007 - 11:57 PM

In my first post a few weeks ago I asked if it was worth knowing if you have scleroderma. Since then you have all convinced me that it is, even if there is no cure at this time there are treatments and I am very grateful that I found this website! I have an appointment with a rheumotologist in October, they requested that I bring a copy of my medical records, I picked them up from my primary care physician Thursday. I have been looking over it and WOW is all I can say! I noticed that every time I had a CMP the BUN level is LOW, this can indicate liver disease and that reminded me that when I had my gall bladder removed in February they said that my liver was a bit inflammed. The 2 latest CMP's that I had done were 3 months after I had my gall bladder removed. Nothing was ever said to me about the low BUN but it seems to me that with everything else (Raynauds, tight skin, adema, arthritis...) someone in the host of dr's that I have seen should have picked up on something! I am not trying to diagnose myself but it seems to me that perhaps our health care providers just don't know enough, if any, about this disease!! Now I am wondering what would it take to make it well known, to get it on the list with things like cancer and diabetes so WE can push for a cure? I am sure that this has been brought up numerous times but I find myself wanting to DO something!

Best Wishes to All

#2 lizzie


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Posted 18 August 2007 - 05:33 AM

Hi Tammy, I can only speak from my experience here in the UK but the majority of doctors I know , know very little about SSc. It has been said that here in the UK that the average general practitioner (family doctor) will see only one case in their career, so it is probaly understandable that they do not diagnose it from the diverse range of symptoms we present with. I was only diagnosed because general practitioner had sent me to cardiologist with rapid heart rate and splinter haemorrhages which can indicate bacterial endocarditis, it was only because the tests for that came up negative that they ran other blood test including ANA which showed positive, so was sent to rheumtologist. He said that it is otherwise unlikely that it would have been brought to medical attention at that stage. I do though think that here is much more awareness than there was re the importance of checking ANA when someone presents with raynauds.

Conditions such as diabetes are much more common and are better recognised by the doctors when they see it , largely because the symptoms are much more specific and diagnosis easily confirmed by blood/urine test. Even so there is as yet no cure for diabetes, despite lots of research into it. Treatment though is better than it used to be, which is I think is definitely the case with SSc, as can be seen by much better survival rates than previously. Hoepfully in the near future there will be a cure. It seems to me that the search for a cure for any of autoimmune or indeed other diseases is of benefit to all - e.g stem cell research.

#3 Sweet


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Posted 18 August 2007 - 07:56 AM

Hi Tammy,

Even though the doctors are the experts, I have always felt that a patient can do as much towards helping figure out the issues and work on the cures/treatments as well.

We are our only advocates, and it is our bodies!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 epasen


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Posted 18 August 2007 - 08:39 AM

Tammy, here in Finland we have more than 5 million people but only LESS than 500 cases of different kinds of scleroderma.. It's no wonder the doctors don't make the diagnosis too fast.

Take care :))

#5 Tammy


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Posted 18 August 2007 - 10:28 AM

I understand what you guys are saying, we are the only ones who know what it TRUELY going on with our bodies and with all of the different types and symptoms of this it is a very complicated and complex thing to diagnose. In the last 7 or 8 years I have seen 8 different doctors (unfortunately the dr who first suspected scleroderma was no longer covered by my insurance), including a rheumatologist who would not even do any tests because of my age and the rarity of it. I made each dr aware of the possibility. When the Raynauds got so bad that I couldn't even carry a cold drink I saw my new primary care physician, he put me on a calcium channel blocker. I took it for about 2 weeks and noticed that my swelling had worsened, I asked my pharmacist, who is also my boss, if I should continue the new med, he said that I should leave if off and contact my dr, I did. The only thing that my dr said was, yeah, he's right, leave it off...no let's try something else, or lets do some blood work, come in and see me...NOTHING!! When my hips and legs got so bad that I couldn't step up on a stair without literally pulling myself up by the rail and my legs would buckle when I walked, his suggestion...you should probably get a cane, I was 28 years old!!!! I have since changed primary care physician's again (this time of my own accord), I usually see his APN, which is fine, she is very good at her job. Several weeks ago when I brought the CREST and scleroderma up to her, she had never even heard of them, she had to consult with the dr on that one. When I went for my follow up she had been researching this on her own and after talking to the dr they felt that it was a good idea that I see a rheumatologist again because in there opinions it is likely that I have some type of this. I read the posts and personal stories and my heart breaks for everyone and their families, I guess maybe I have hit that frustrated and nervous stage, October seems like a long wait now.

I wish each and everyone of you the best of luck in life and medicine!!


#6 jefa


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Posted 18 August 2007 - 09:04 PM

Well, it is good to see that you are in fact becoming your own strong advocate. And looks like you have found another in your doctor's APN. At 28, you and your medical team should be eagerly trying to get to the root of the problem.
Warm wishes,

Carrie Maddoux
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(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)