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!


Photo

Welcome Omaeva


  • Please log in to reply
7 replies to this topic

#1 jefa

jefa

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 29 February 2008 - 01:43 AM

Hello, omaeva, and welcome to the Forums. Hopefully this will sort out that odd thread. Your post is out of sequence, but everything is all here now.

I am sorry to hear you have been diagnosed with Scleroderma at such a young age, but glad to see you have such a positive attitude about it. Have you seen a scleroderma specialist? I would push to get some kind of treatment for the Raynaud's especially if you have had ulcers. Many doctors are prescribing Viagra/Revatio for Raynaud's. I look forward to hearing more from you on the forums.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#2 debonair susie

debonair susie

    Platinum Member

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

Posted 29 February 2008 - 06:50 AM

Hi omaeva,

I'm sorry to read that you are so young... having raynauds and the ulcerations.
Though I don't have ulcers, I know that many on this board, suffer from them. I
also know that without treatment, your dr isn't looking out for your best interests,
IMHO. If you have access to another rheumatologist or even better, a Sclero specailist,
it would behoove you to make a move in that direction. I'm only guessing, but this
dr sounds unsure of what should be done and could be stalling.

Hugs,
Susie
Special Hugs,

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

#3 Sweet

Sweet

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,890 posts

Posted 29 February 2008 - 10:25 AM

Hi Omaeva,

Welcome to the Sclero Forums. Sorry to hear about your Raynaud's, I know what a pain that can be. I look forward to knowing you better!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 truman

truman

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 625 posts
  • Location:NJ

Posted 29 February 2008 - 02:16 PM

Omaeva:

I too have CREST and had denied it for 16 years until symptoms last year forced a showdown.

The main problem I had with my general practitioner is that my rheumatologist was not pro active enough in wanting to provide maintenance for my condition.

I had since switched rheumatologists who is presently treating me for my Raynaud's, calcifications and associated CREST symptoms. Presently I've been grateful in that my condition is somewhat limited to the right side (don't know why), but I have had an amputation of my large toe due to an ulcer produced by the Raynaud's.

Perhaps it's time you start checking out other rheumatologists. This site offers a great deal of information and depending on where you reside, many here can refer you to those knowledgeable in CREST and Scleroderma.

Linda
Tru

It is what it is...........

#5 SpaceysChick

SpaceysChick

    Senior Bronze Member

  • Members
  • PipPipPip
  • 48 posts
  • Location:Waddell, Arizona

Posted 01 March 2008 - 10:36 AM

Omaeva,

I'm sorry to hear that you are so young and have to deal with this disease. I to was diagnosed young, and after looking at my medical history I've been dealing with symptoms of this disease since I was in high school. I was diagnosed with Limited Scleroderma when I was 24. My doctor at first didn't do anything to help me out, saying there was nothing to be done. It was only as recently as last year when I changed doctors that I've actually begun recieving treatment for different symptoms I am having...

I hope to get to know more about you and you enjoy this forum. it's a great place to be full of wonderful understanding people.

#6 emmie

emmie

    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 321 posts

Posted 01 March 2008 - 06:19 PM

Hi Omaeva,

Welcome to you! I'm glad that you finally got the correct diagnosis but am very sorry you are so young.

Have you made your rheumatologist aware that you would like to do something about the finger ulcer? I'm assuming your Raynauds is also bad; did you let him/her know you want help managing that as well?

I ask because at my first visit when I was diagnosed, I told the rheumatologist that I didn't want to take anything yet when he brought meds up to me. When I went back for my second visit, I told him I would like to try something to try to improve the Raynauds (mine is baaaad). At this visit, he told me no, I would have to wait until the fall (this took place in July). Well, we all know Raynauds doesn't take a vacation! Anyway, I found a new doctor.

So, if you find that this doctor doesn't want to help you with the symptoms that you have now that are painful and bothersome to you, find a new one!

emmie

#7 Cheri

Cheri

    Senior Bronze Member

  • Members
  • PipPipPip
  • 74 posts
  • Location:Sequim, Washington

Posted 02 March 2008 - 11:27 AM

Hi Omaeva,

I just wanted to welcome you. I'm sorry you are so young being diagnosed with CREST. You have found a wonderful place for answers and lots of very knowledgeable and caring people. I was diagnosed fairly recently and hadn't had a lot of symptoms yet. I guess I just got "lucky" with a doctor who ran the right tests, sent me to the right people, and I got diagnosed quickly. I have asked many questions and there is always somebody who either has an answer or directs you to the right information.

A warm welcome,

Cheri

#8 omaeva

omaeva

    Silver Member

  • Members
  • PipPipPipPip
  • 161 posts
  • Location:CA

Posted 02 March 2008 - 09:22 PM

Copied from broken thread (originally posted on 29 February):



HI,

I just wanted to introduce myself. I recently got diagnosed with CREST. Although I've known I had it for the past few years, I had trouble finding a doctor that would give me the correct diagnosis. I'm 22 years old, and have been affected with raynaud's all my life, and never thought anything of it until I started getting calcified lumps on my fingers. it's slowly gotten a little worse and more painful. My biggest problems are raynaud's pain, soreness in the lumps, and ulcers. Right now I'm not on any medication because my doctor wants to see what happens in the next few months.

I am really thankful I found this place though and to see some treatments for some of these issues.

Ok I'm back now.

I might have to consider seeing a different rheumatologist, but this one was the first doctor that I've seen in the past year that has actually known what condition I have. He was basically saying that all the medications are too much for me at the moment and since I'm not really 'suffering' yet. Everything is manageable for the time being. Though I've read around here for the treatment of ulcers the gel? I might have to ask him about that. I've had one on my index finger for over a year now, sometimes it gets better and sometimes it gets worse, I'm sure you all know.

Thank you all for such a warm welcome.