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!


newbie - such a weird disease...

  • Please log in to reply
5 replies to this topic

#1 kaykay


    Senior Bronze Member

  • Members
  • PipPipPip
  • 30 posts
  • Location:Boise Idaho

Posted 20 January 2010 - 06:47 AM

Hi All - I'm pretty new here, so I'll summarize my situation. Thanks in advance for sharing your experiences and advise.

A year ago I went in for joint pain and the blood test came up with a positive ANA and positive dsDNA (highly specific for lupus) he diagnosed me with undifferentiated connective tissue disease (UCTD). During the spring and summer I had mouth sores, scalp sores and joint (mild) pain. then in the fall (Sept 2nd to be exact) I had a major 'flare' painful dry eyes, couldn't swallow, couldn't eat, and began coughing - though the cough not too troublesome. I got some of those things resolved including diagnosis of Sjogren's and GERD, at my last visit my rheumatologist referred me for chest x-ray, breathing test, EKG and echocardiogram - that's next week. I also developed a mad itch. And occasional very painful night joint pains (wake-you-up-in-the-night-screaming-pain) which passes in a few hours. So weird.

The past few days I've had a swollen finger (right index) it seems stupid to complain about this but it's painful, can't use it - can't bend it. Then it dawned on me - is this what 'thickening' starts out like? It feels bruised and doesn't look as swollen as it feels.

Second question, since my doctor is doing the heart/lung tests we're on the right path, right? He officially diagnosed me with Lupus at last visit, but it just seems more like it is headed in this direction. I've read that there isn't any effective treatment to alter the course of systemic sclerosis (SSc) so what's in a name? As long as he's treating it properly? I don't think the possible diagnosis of SSc is getting by him, I just think he's cautious, but I'm not sure. There was so much on my mind and we only have a limited time at each doctor visit - you know.

Can I just ask one more question - so when your doctor summarizes the visit and send the report to your primary or your rheumatologist do you think your rheumatologist reads it? Ever? - either when it arrives or before a visit?

#2 judyt


    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 638 posts
  • Location:Auckland, New Zealand

Posted 20 January 2010 - 04:00 PM

Hi,sorry I have forgotten your name already, I read to the end of your questions and got so engrossed in thinking about what you were saying I forgot to remember your name.

Here in New Zealand things might be a little different from where you are, BUT I would expect any Doctor anywhere to read reports. If they don't I would first of all ASK if they have read the report and ALWAYS ALWAYS get a copy for yourself. When you are having any test at all ask the provider to include you in the COPY TO box.

What should happen is that the report should arrive with your general practitioner or Primary or whatever, they should read it and if anything untoward or different appears they should contact you to discuss it. IF YOU HAVE RECEIVED A COPY YOURSELF THEN YOU CAN READ IT, NOTE WHERE ANY ABNORMALITIES ARE SHOWING AND ASK FOR ANOTHER CONSULTATION. I have 'shouted' this to you because I believe it is paramount that you are pro-active about your own care. The information is about YOU, it is YOUR property Even if the answer is that it is not far enough away from normal to matter, then you are still aware that that item could be going out of normal and keep an eye on it yourself.

I saw a different Rheumatologist yesterday - I have seen him before but not for several years.
He needed to be brought up to speed. He had some information from my general practitioner but there were some things he didn't have so he went through my folder and copied the pages he wanted.

I hope others have been able to answer some of your other questions, but the most important thing I think is to educate yourself about your disease, and that is so easy these days.

I bought a medical dictionary years ago so I can check what words mean while I am reading from the screen.

Good luck, stay warm, be brave.

Judy T

#3 janey


    Platinum Member

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

Posted 21 January 2010 - 04:09 AM

Welcome to the ISN forums! I'm sorry to read all that you are going through, but it does sound like your doctors are being quite thorough. Scleroderma, as well as other connective tissue diseases, can be a difficult diagnosis. So, as Judy pointed out, you need to be proactive. Keep a written diary of all your symptoms, status, appointments, pretty much everything. Include any questions that you want to ask at the next meeting. Take the diary and list of questions to your doctors' appointments. It's amazing how our brains freeze when we're in a doctor's office.

Ditto on everything that Judy said about test and visit reports. Get a copy of everything. When I saw my rheumatologist this week, I took in a copy of my last 2 pulmonary function tests results. He could have pulled them up on the computer, but really appreciated have a hard copy right in front of him to compare. He had not reviewed them before the visit, but did review them and the pulmonologist's write up during the visit. I actually prefer that they review other doctor's results during my visit. That way I can read it also (if I don't already have it) and we can discuss specific items. My rheumatologist is great about this!

A hint on the night pain - I get that periodically and have found if I get up and walk around, it goes away. Weird, but it does. Of course my pain is in my hips and knees and leg muscles.

I'm no doctor, but I feel that for any systemic disease like lupus or scleroderm, it is important to run test on all of your internal organs right up front. It provides a baseline to go from and it also allows you and the doctors to see if any organ has been affected. The early you find problems, the better. So the heart/lung tests are good tests!

Please let us know how these tests turn out and how your doctor appointments go. Let us know if you have any more questions. We're all here for you.
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 kaykay


    Senior Bronze Member

  • Topic Starter
  • Members
  • PipPipPip
  • 30 posts
  • Location:Boise Idaho

Posted 22 January 2010 - 04:13 AM

that's good advise - I will do that. I have the blood tests that have been done this year but never thought to ask for the write ups.

the night pain was really severe - couldn't walk - knee pain so odd. Now I have slight pain in those joints but nothing as severe,

thank you for your thoughful replies. Two more weeks before I will know anything more about my condition.

meanwhile hope you all are staying warm and rested.


#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 22 January 2010 - 07:24 AM

Hello Kaykay

To echo what has already been said get copies of letters sent between your doctors so you are aware of what they should be aware of. Make sure you ask your questions, apointment timing is not your worry so take as long as you need. You are entiled to engage in your treatment process and to be informed.

Take care.
Amanda Thorpe
ISN Sclero Forums Senior Support Specialist
ISN Video Presentations Manager
ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist
International Scleroderma Network (ISN)

#6 miocean


    Senior Gold Member

  • Members
  • PipPipPipPipPipPipPipPip
  • 925 posts
  • Location:NJ

Posted 22 January 2010 - 09:45 AM


I have my doctors fax my tests to my sclero specialist but she never seems to get them so I have learned to get a copy of everything myself and bring the reports with me when I go to see her. She always gets a ton of papers from me which she looks over on the spot. Good luck with your upcoming tests.

ISN Artist