Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

New rheumatologist


  • Please log in to reply
10 replies to this topic

#1 debo_92

debo_92

    Bronze Member

  • Members
  • PipPip
  • 26 posts

Posted 10 August 2010 - 01:02 PM

My previous rheumatologist left the clinic where I am a patient. I got to see his partner to get established with him just today. At my last appointment there my previous rheumatologist advised that even without serological evidence, he believed I have limited scleroderma. I agree with that assessment. The new rheumatologist not only did not agree but he also had a lot of contradicting thoughts. He insisted that without serological confirmation that no diagnosis of scleroderma can be made. I did try to discuss my research into this area but he was definitely not interested in hearing me. As he was planning on treating symptoms (which he agreed all are symptoms of scleroderma), I decided to drop that issue. At one point he decided that my deceased grandfather's diagnosis was wrong based only on me telling him that my grandfather had been diagnosed with systemic lupus and crest syndrome. He told me that my grandfather probably only had one of those. Really? He has never seen my grandfather nor any of his medical records so how would he know?

He tells me that I am a sick person and need to remain treatment compliant or risk worsening my condition (you mean the condition you insist I don't have?). He believes I may have degenerative disc disease and I need a lumber spinal x-ray. He also orders a lupus panel (why lupus? I have no idea) and clean catch urinalysis. The latter was ordered to results of a previous urinalysis from May of this year. He tells me that I need to be monitored more closely than I have been. I was also ordered PFT's and a Barium Swallow Test. All this for someone with no diagnosis. Oh wait, he agrees I have Raynaud's and that is it...lol.

He wants me back there in about 10 weeks. He is a much older doctor and I am sure that is where a lot of his beliefs come from. The best news about all this is that it is a temporary situation and my symptoms are being treated! My family and I plan to move out of our current state next summer so it will be a whole new doctor then.

Thanks for listening!:jump-for-joy:

#2 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 10 August 2010 - 02:23 PM

<<He insisted that without serological confirmation that no diagnosis of scleroderma can be made.>>

Hi Debo ,

For what it's worth, initially, Gareth HAD the positive blood work along with the esophageal dysmotility, restrictive lung issues, chostochondritis (inflammation), loss of vocal cords, 20 pound weight loss, extreme fatigue, BUT no skin issues. Even though he didn't get the sine scleroderma diagnosis, but the UCTD diagnosis, they started him on Plaquenil. It really doesn't matter as long as they treat your symptoms. Even now, the rheumatologist has added Raynaud's and SICCA to his diagnosis, but still considers it UCTD....not sine scleroderma.

Take care, Everyone.
Margaret

#3 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 10 August 2010 - 03:41 PM

I think frustration with doctors should be added to the list of clinical symptoms leading to a diagnosis~ Yes? No? :huh:
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#4 JaneLesley

JaneLesley

    Bronze Member

  • Members
  • PipPip
  • 27 posts

Posted 10 August 2010 - 08:42 PM

Oh wow what a worrying time for you - get packing your bags quick and get to a doctor who listens.

I have the opposite problem to you, I have a rheumatologist who confirms I have Limited Scleroderma (bloods confirm it) but says that all my joint pains, stomach problems and even the swollen side of my face, etc. are not connected to scleroderma because there is no skin involvement in these areas (when he pinches my skin there are still wrinkles)!! Bet your man didn't try that one did he!

Hope you get some good results soon from someone who will truly listen to you - and if all fails get your doctor to pinch you - obviously a tried and tested method of diagnosis!

My very best wishes to you.

Jane

#5 lizzie

lizzie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 497 posts
  • Location: UK

Posted 10 August 2010 - 10:05 PM

HI Debo,

I can understand your frustration with your rheumatologists attitude regarding needing serological evidence for a diagnosis - clearly he is not right about this. As for his "knowledge" about what was wrong with your grandfather, well!! However, trying to be kind, I do see some positives in his approach. Firstly he seems keen to monitor you more closely - which is never a bad idea. Secondly , I think that it is normal (and responsible) for a rheumatologist to also do a lupus panel to get a fuller picture of what is happening- some people do have both lupus and scleroderma. I was diagnosed with scleroderma four years ago and my rheumatologist still periodically does blood tests to check for lupus antibodies.

On the subject of degenerative disc disease, I was diagnosed as having this last month following an MRI, but I think beyond a certain age it is so common as to be almost normal, and my Ortho was not at all concerned.

Lizzie

#6 debo_92

debo_92

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 26 posts

Posted 11 August 2010 - 06:15 AM

I am glad that this doctor is at least treating my symptoms and wanting to monitor me, definitely! I just hate the contradictions he tells me during a single visit. He tells me I am not a well person and my condition will only worsen unless I remain medication compliant and have more doctor visits but then tells me I only have Raynaud's. Well which is it...am I sick or just simply have Raynaud's? That is what is frustrating. I guess at least there will be documentation of his monitoring that a new doctor can look over and help to make a decision about me...lol. I guess we just have to love doctors. I found his bio online and found out he is 75 years old and graduated from medical school 50 years ago. I am sure he is definitely old school!

#7 Snowbird

Snowbird

    Platinum Member

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

Posted 11 August 2010 - 11:33 AM

Well, on the bright side of the coin, he does seem to have some plus's...the biggest being to monitor you, gotta like that! My family doctor ran another lupus test on me this year too and to be totally honest, I didn't really now why either. But I trust him implicitly and he's good, so I just run with him no matter what. When I see him in the fall, I hope I remember to ask him why that one in particular. It seemed important to him to do it. I'm guessing as well just because of overlaps.

I know it's frustrating to figure out but maybe he's just keeping you on his 'watch list', which is also good, meaning he will deal with symptoms as they arise...who knows?
Sending good wishes your way!

#8 enjoytheride

enjoytheride

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 367 posts

Posted 11 August 2010 - 04:25 PM

I know how you feel. I have been seeing a rheumatologist who has a habit of suddenly saying unusual things in a loud voice. I said I was thinking about getting the large calcinosis bumpy thingy taken off my finger- she shouts at me "well I not going to do it." Luckily I was not intending to ask her to do it. I was referred to an endrocrinologist by my primary doctor because of some blood test results and she shouts at me " You don't have Parathyroid disease." The endrocrinologist thought so.
But the best one was the last when I mentioned I got some good information from this site- she shouted "Why are you going there- you don't have scleroderma." - she's been treating me for CREST syndrome.
Usually I don't respond because I'm too taken aback. But I just may ask her about the last one. If she's right, I'm one confused cookie.
Anyway- this site has been a blessing because it has given me enough information to ask the right questions.

#9 debo_92

debo_92

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 26 posts

Posted 12 August 2010 - 03:08 AM

Well that sounds like quite an interesting doctor to deal with. I have read enough online to know that being told you have an autoimmune disorder and then it being taken back happens frequently enough. I am not at all rattled about that for sure. As long as they treat my symptoms I don't care why they are doing it!!! I do think contradicting yourself in the same office visit is a bit out there though.

I guess the good thing is that if we get really concerned about a doctor, we can choose to go elsewhere...lol. :emoticon-bang-head:

#10 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

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

Posted 13 August 2010 - 08:36 AM

Hello Debo

Well if blood work is the be all and end of of the diagnostic process then I don't have scleroderma, despite being treated by one of Europe's experts in...well...scleroderma! I have and have always had a negative ANA, even having developed heart involvement.

I admire your patience in dealing with the doctor, I couldn't!

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)

#11 debo_92

debo_92

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 26 posts

Posted 13 August 2010 - 09:19 AM

Well it doesn't take much patience when I realize he is only one doctor. He is wrong about how a diagnosis can be made and I will work with him to treat symptoms for now. I go in next Tuesday for my Barium Swallow Test and the 27th for my PFT's. My bloodwork is already out the door and heading for testing at the lab. I think he is only testing for Lupus and not even doing an ANA test again so I doubt it will be very helpful...unless it turns out that I have lupus. <_<