Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Help The Doctor Visit Was Frustrating!

  • Please log in to reply
5 replies to this topic

#1 KayBear



  • Members
  • Pip
  • 6 posts
  • Location:Idaho Falls,Idaho

Posted 31 January 2008 - 12:28 PM

Hello everyone,
It has been a while for me since I posted. I have found all of your advice so helpful so I am back for more. Hope you all can help.I waited 3 months to see the rheumatologist and was hoping for too much I guess. I was diagnosed positive with the screening for CREST we thought it was finally anwsers to alot of unanwsered questions.But at the first appt today he looked at me and checked my joints and then said I needed 3 tests an EKG, Berium swallow, and a lung capasity test. I understand all of that but he seems to think because my family has a history of auto immune disorders that I don't have CREST being active but I have all of the factors according to my regular doctor. I have the constant heartburn and trouble swallowing at times the heartburn is under control with meds. He said I did have the dicoloration in my fingers and toes due to cold(rhynauds) only he didn't call it that.I have had two deposits removed they never did say what they were they just said calcified deposits this has been in the last 4 years. I have the red splotches on my cheeks they never go away. one good thing I never need BLUSH.HAHA sometimes I get it in patches on my chest and stomach but it usually goes away after a long while.

There is more buut I am sure you all get the idea where this is going.

My question is can you have CREST without having outside skin involvement?

He looked at my skin and said there was no thickening of the skin so CREST proably was not what I have.He said you can have the positive screening and the disease never becomes active he told us that you could look at a person and see they have CREST because of the skin, so that proably wasn't my problem.Please HELP!!!!

he seemed to think that having the LAPBAND surgery would get rid of the sore muscles and joints, and it would help my sleep and give me more energy and that I need a vacation from my daycare.This was his anwser. I am overweight I weigh 232 I know that is part of it but not all of it.Iknow losing weight would be great but its hard I have tried my whole life. Even when I did PHEN/PHEN I only got down to 176 and that was on a 900 calorie diet with almost no cheating and daily workouts.

I am so frustrated after today that I am ready to say forget it all and just scream.

Sorry to be so talkative but I am hoping you all can help anwser a few questions because his anwser is lose weight and it will go away. If it was that easy I would have done it years ago. I get the impression he thinks I am a quack and donesn't know anything. He talked about the limited CREST but never mentioned ther is two strains limited and diffused.

Please Help!!!!!!

#2 Sheryl


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,029 posts
  • Location:Brooklyn, Michigan

Posted 01 February 2008 - 03:27 AM

Hello Kaybear,
Yes you can have sine scleroderma. Means without skin involvement. I have very little skin involvement that others would be aware of. My skin is thickened and the swelling comes and goes. I do get the arthritis type pain all the time even if my fingers aren't swollen.
Maybe your doctor doesn't want to put on your records that you have or may have scleroderma. For some reason my family doctor was afraid it would change my insurance or my coverage would change somehow. Maybe, he thought I would be sent elseware and not keep him as my doctor. Who knows. I never figured that one out. My coverage hasn't changed.
I hope you find out soon what is going on. It can be very frustrating trying to find out what is going on. Sheryl
Strength and Warmth,

Sheryl Doom
ISN Support Specialist
(Retired) ISN Chat Moderator
International Scleroderma Network (ISN)

#3 janey


    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 01 February 2008 - 05:48 AM

If I were to walk into a new doctor today, he or she would probably say I don't have scleroderma. There is no obvious skin hardening anywhere. I had it on my hands to my wrist for about 6 months back in 2003, but once I started treatment it went away. I once had a pulmonologist question my diagnosis and refused to treat my pulmonary fibrosis because it wasn't "bad enough". (it was restricted to the lower lobes and my DLCO was ONLY 52% later to become 48%). So yes - as Sheryl mentioned - you can have scleroderma without skin involvement.

I found the following article on our page: Types of Scleroderma.

Classification criteria of scleroderma It states
Those patients with systemic scleroderma involving the trunk are classified as "Cutaneous diffuse systemic scleroderma"; the association of Raynaud's phenomenon, capillaroscopic abnormalities and specific autoantibodies defines "limited systemic scleroderma"; among the latter patients, those with distal skin involvement are classified "Cutaneous limited systemic sclerosis". The old term "CREST" tends to be abandoned due to its lack of specificity.

On my first visit to my rheumatologist he did a capillary test to help confirm my diagnosis. That test seems to be quite common and very valuable for a diagnosis.

Hope this helps. Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#4 epasen


    Silver Member

  • Members
  • PipPipPipPip
  • 233 posts
  • Location:Lohja, Finland

Posted 01 February 2008 - 06:33 AM

Oh KayBear,
I don't know about the CREST thing, but I know how frusthrating doctors visits are.. first you wait them SOOOO LONG, months, and then you see someone who does not give you any proper answers and lets you down somehow. Its hard to be positive in the middle of all this, so I'll send you some good thoughts!

#5 susie54


    Silver Member

  • Members
  • PipPipPipPip
  • 259 posts

Posted 01 February 2008 - 07:55 AM


I just would like you to know you are not alone in feeling frustrated when it comes to diagnosing autoimmune diseases. Doctors are soooo hesitant to give any diagnosis until they are sure. Just make sure you have doctors who respect and treat you for what you need at the time.

On the weight thing, I too was once very overweight when I became ill with MCTD nine years. All I heard from the doctors was if was weight related so I became so frustrated I decided no matter what I was going to lose the weight so I could make them all understand it was not weight related. I got in the water and started moving and walked but I just kept moving (ignoring alot of time that used to spend on my family or friends or whatever.) It worked and they paid attention to me and finally four years after I got this disease, I WAS DIAGNOSED. Hang in there and don't ever give up. Susie54

#6 KarenL


    Silver Member

  • Members
  • PipPipPipPip
  • 213 posts

Posted 01 February 2008 - 09:08 AM

Hi KayBear,

I have no skin involvement either, or very very little.. To be diagnosed with CREST, you need two of the five symptoms, not all of them. It's not even called CREST any more it's called limited systemic scleroderma. CREST is considered an outdated term. Raynaud's and esophageal involvement is enough to deal with. Get a new doctor, a really good rheumatoligist. Good luck,