Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

I may be getting somewhere. I saw a new rheumatologist this week.


  • Please log in to reply
10 replies to this topic

#1 amberjolie

amberjolie

    Silver Member

  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 07 October 2011 - 08:51 PM

I think I mentioned in a previous post how my rheumatologist told me I was ruminating about my health too much and he felt I needed an anti-depressant. I asked my general practitioner to refer me to someone new, and gave her some names that had good ratings on an online doctor rating site.

This past week, I saw a new rheumatologist. He was quite upset that no one had ordered a hand x-ray yet, even though my fingers were pitted and I had had ulcers. He was also very upset that no one sent me to an opthamologist, even though I'm on Plaquenil. So he took care of those.

He asked about the bloodwork, and I said that everything other than the ANA always comes back negative. He said that he found it hard to believe, and ordered more bloodwork to see.

After looking at my various symptoms, he said he felt I had some form of scleroderma, possibly CREST, and he wanted to wait until he got the x-ray and bloodwork back first. I will see him at the end of October to get the results.

He mentioned, however, that he was retiring, but that he'd send me to a rheumatologist with an interest in scleroderma. I gave him the name of my husband's rheumatologist, who I tried to see before and couldn't, but in retrospect, I'm wondering if perhaps I should see someone else, since he's very busy and didn't want to accept me with negative bloodwork.

Later in the appointment, he said something like, "I don't care what the bloodwork says!", so I've finally found someone who doesn't rely on the bloodwork.

Anyways, I just felt like sharing this because I'm quite happy I found someone who actually looked at all these symptoms I've been having that I didn't think could be due to Sjogren's. I guess I'll know more at the end of October.

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 07 October 2011 - 11:37 PM

Hi Amberjolie,

I'm very happy that you finally found a doctor who listened to you.

I guess I would also be hesitant about your husband's rheumatologist because scleroderma isn't always clear cut with blood work and that is why the symptoms themselves are very important for diagnosis. Maybe you can discuss that issue with him at your next visit.

:emoticons-group-hug:
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.

#3 Joelf

Joelf

    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,610 posts
  • Location:West Sussex

Posted 08 October 2011 - 12:13 AM

Hi Amberjolie,

It's excellent news that you've seen a rheumatologist who seems as if he's much more up to speed, listens to you and is giving you more help and advice.

I do hope your appointment at the end of October goes well; keep us posted, won't you?

Kind regards,

Jo Frowde
ISN Assistant Webmaster

SD World Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)


#4 Sheryl

Sheryl

    Platinum Member

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

Posted 08 October 2011 - 06:35 AM

Amberjolie, it is good that you are finely getting somewhere with your ongoing illness. I hope you get unsolved questions answered before this doctor decides to retire. Do make sure your next doctor specializes in Scleroderma and associated diseases. Maybe you are better off not going to the same doctor as your husband. Why give him your money when he wasn't interested in your case in the first place. Sometimes it is conflicting for the doctors as you might ask about something related to you on a visit for your husband and he isn't getting paid for a dual visit. Things can be tricky for confidentiality between the doctor and each patient. Just some thoughts of mine, that you might want to think about before trying again to see your husbands doctor. I for one sure wouldn't want to go to the same doctor. There are some things I wouldn't want discussed between my doctor and husband in front of me or behind my back in the hallway.

Strength and Warmth,
Sheryl

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

#5 czecher

czecher

    Newbie

  • Members
  • Pip
  • 5 posts
  • Location:Nova Scotia, Canada

Posted 08 October 2011 - 09:59 AM

I would have to agree that you should seek the advise of another scleroderma specialist, as your first visit did not unfold as you had planned. Take the advice of this new doctor you've seen and find out if you can get an appointment with the specialist he recommends. These doctors have good inside knowledge of which other colleagues share the same practices,number/type of symptoms required in order to diagnose, etc. I wouldn't want to share the same doctor as my husband either.

#6 Snowbird

Snowbird

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,008 posts
  • Location:Canada

Posted 08 October 2011 - 09:14 PM

Hi Amberjolie

Glad to hear you are getting somewhere with this. I too would go with who he recommends rather than your husbands who doesn't seem to fit with this particular illness if he feels that way. I agree with Czecher because I also think that they do share inside knowledge amongst themselves. We also know that blood work does not always show either but it's good that he is checking yours again anyway. I don't think it hurts to keep checking and you never know, he may have ordered specific tests that were never done before. Hope you keep us updated.
Sending good wishes your way!

#7 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,927 posts
  • Location:U.K.

Posted 09 October 2011 - 10:21 AM

Hello Amberjolie

Excellent news girl! What a relief that he is not focused on blood work results! I so hope that you get something even more concrete in October, how bizarre that should you get a firm scleroderma diagnosis that it will be something to celebrate! :emoticon-dont-know: Weird eh? Well not really because there's nothing worse that having an array of symptoms and nothing to pin it on, in my opinion. When I got diagnosed I was aware that as awful as having scleroderma was going to be, no diagnosis would have been even worse.

Take care and keep us posted.
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)

#8 amberjolie

amberjolie

    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 197 posts
  • Location:Ontario, Canada

Posted 09 October 2011 - 12:44 PM

Thank you for all your replies!

I think I might give the doctor a call and let him know that I may just want to go with his recommendation instead of my husband's rheumatologist. He might decide to get the ball rolling and start a referral before seeing me again, if he gets some results back that lead him in that direction.

Amanda, you are so right! It's strange to want a diagnosis, but it'll be like a vindication of everything I've been thinking since this all started, and of all the symptoms I've been feeling. So I've got something to "blame". And so people can understand that I'm not just lazy, or out of shape, or whatever (although I am also out of shape :P). I haven't really had any comments yet, but I know that can be an issue for some people with autoimmune (AI) diseases.

And in case at work I find things more difficult to do as time progresses, it would be nice to be able to properly explain why.

I'll keep you all posted!

#9 judyt

judyt

    Gold Member

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

Posted 09 October 2011 - 03:17 PM

Hi Amberjolie,

You are So Right. I had my first Raynaud's attack when I was about 22. The gastritis started within 2 years of that along with severe migraines (not really a sclero thing), varicose veins (yes I was only about 24 when I had big ugly ones), and it took until 2003 when I was 59 before anybody put two and two together. That was such a relief, at last I was not a hypochondriac, and I could start to go easy on myself.

Every time I tried to do a part time job once the children were getting bigger I just found it too hard. I was always too cold or too tired or had a headache and I really did feel that I was just not trying.

Go easy on yourself and persevere in your search for a diagnosis; it will give you satisfaction if you ever get to it.

Judy T

#10 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,892 posts

Posted 11 October 2011 - 10:13 AM

Excellent news! Let's hear it for small victories! :woohoo:
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,638 posts
  • Location:(United States)

Posted 11 October 2011 - 10:23 AM

Hi amberjolie,

I am THRILLED to read that you were finally able to see someone who knows about the actual diagnosing, in thaet it doesn't always presnet thorugh a pos ANA, but rather can also be a clinical diagnosis, which he obviously can see!

I'm also VERY happy you are planning on asking for the retiring rheumatologist's referral to the rheumatologist he suggested to you.

ROCK ON, Girl!!! You're headed in the right direction!!! WooHoo!!! :yes:
Thanks for keeping us in the loop!
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)