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#1 ginny

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Posted 31 January 2008 - 05:35 PM

thanks to all your replies I really appreciate it so much. I got some blood test results back and it did not suggest scleroderma but they still suspect it but basically said they just cannot help me. does anyone know of a scleroderma specialist in Colorado? do you think it would be that much better then a rhuematologist? also is there just one set of test they do to determine this? because that is what they are saying. I am so upset with this I cannot find help and I do not know what to do. any help would be greatly appreciated. I really fit the description. are there any test for the digestive tract that can determine this? biopsy's etc.? THANK YOU SO MUCH

#2 peanut

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Posted 31 January 2008 - 08:52 PM

Ginny,
Maybe Tangelo would know of a sclero specialist in CO.

There are other tests besides blood work, like lung biopsy or testing other organs that you think may be affected by sclero. A second opinoin also never hurts.
Also check out the page on difficult diagnosis

hugs,
peanut



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 epasen

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Posted 31 January 2008 - 10:17 PM

Ginny,
try to get a second opinion and if that's different than the first one or if it's the same too get a third one. It's all so stresful but it's worth it. Sorry to hear that your doctor haven't been too helpful.
Take care,
Emmi

#4 LisaBulman

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Posted 01 February 2008 - 04:29 AM

Hi Ginny,
Here is a list of the sclero specialists in Colorado. They are listed through the Scleroderma Clinical Trials Consortium. Tangelo might use someone else. I am sure she'll jump in when she sees this.

Lisa
Lisa Bulman
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International Scleroderma Network (ISN)

#5 Snowbird

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Posted 01 February 2008 - 11:25 AM

Hi Ginny

I likely missed your earlier notes...not sure of all you have had done...but this is what they did to me when I was diagnosed...I have recently been diagnosed with Systemic Scleroderma Limited CREST...if it helps you?

My rheumatologist did a physical exam, looked at my skin through a special light of some sort for the Sclerodactyly, checked under my nail beds for the capillaries (apparently ours are all messed up, they loop somehow with this disease, I found a picture somewhere on the web once). They also did an echocardiogram and a pulmonary function test (lungs)....plus the bloodwork. My doctor told me there is no cure but that he could help me with the symptoms and that it was very important that I was monitored regularly by a rheumatologist (if not him, him if he stays but I believe he's relocating out of the area unfortunately).

The bloodwork wasn't enough by itself, I was told some of the other things in CREST also needed to be present which I have, I believe 2 of these things below are enough (calcinosis/Raynauds/Esophagus/Sclerodactyly/Telangiectasia). My ANA was very high and was also in the centromere pattern. My understanding is that <1:40 is the normal range (although I read somewhere <1:60 (?) so anything high should be investigated further (hence, that helped with how I was diagnosed). I also learned that SCl-70 bloodwork apparently points to the diffuse type of scleroderma.

I'm sure the others will be able to help you more....they know tons about this disease and are a great help on this site.

I would also go to another doctor for another opinion... you need to find one you feel comfortable with and that helps you with whatever it is that you might have. I personally would not accept that either. Can you have your doctor refer you to someone else for another opinion? Maybe someone on this site and even give you a good name and you could ask your doctor for that one specifically...good luck and I hope you keep us updated.
Sending good wishes your way!

#6 ginny

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Posted 01 February 2008 - 03:00 PM

hi there peanut! how are you? thankyou so much it feels wonderful to have someone actually listen talk about a hard time my goodness I would never believe what you go through when you are sick unless it happened to me and now I feel so bad for other people I plan on helping as much as I can. what happened to you? (if you want to tell me). you guys have all given me hope again I hate so much being so sick I am really a fun happy person. anyway I am going to call on some of the doctors given to me I thought they could biopsy for a diagnosis it made sense but you would think the dr. would let you know this or at least refer you to someone who might know. THANKYOU AGAIN look forward to hearing from you again. TAKE CARE and SMILE! your worth it!

#7 ginny

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Posted 01 February 2008 - 03:04 PM

HI Emmie! how are you? hope all is well. Thanks for the advice it is appreciated more then you know (you probably do know!!!!) if you want to tell me some of your experiences I'd love to hear. anything you hear my ears are open. Thanks again and you take care of yourself. I look forward to hearing from you!!!! always smile sometimes it helps! Ginny

#8 ginny

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Posted 01 February 2008 - 03:06 PM

Hi Lisa THANKYOU SO MUCH! I will call monday morning I appreciate this so much and any information you have would be of much help. how did you get involved in all this? I plan on helping more as soon as I get a grip on my health I am starting to take this very seriously and attacking back. THANKYOU AGAIN Ginny

#9 Sweet

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Posted 01 February 2008 - 04:05 PM

Hi Ginny,

Did you ever get the email I sent you with the list of specialists?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 ginny

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Posted 01 February 2008 - 06:54 PM

hi pamela and thankyou so much. not much in denver I see. I have been going to the national jewish hospital but I am seeing a young dr who is new and not much help yet but hoping. I am gonna call the other ones and see. she ran one panel of test and set another appointment for the end of feb and doesn't seem to say much so I don't know? I heard they can biopsy organs to check for sclerodoma and autoimmune problems. do you think if I get into a sclerodoma dr they would set that up? no dr. has even said it could be done and I know they would find it that way. I am just scared because I am getting worse so fast. the leg pain is coming on so fast and my stomach hasn't stopped hurting in months I am having too many problems and even with the diagnosis I have got they are still just moving so slow. you'd think with all the diagnosis they would care and they just don't. I just want to thank you so much for the help and I look forward to hearing from you. if you know of a clinic that could help me and I mean really help me I am open for suggestions. I have heard some of these specialty clinics have really helped people and I think I may have to resort to that soon. take care and thanks Ginny

#11 Sweet

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Posted 04 February 2008 - 11:37 AM

Hi Ginny,

I think if you find a good Sclero expert, he/she will do all of the necessary testing, or relieve your fears. Keep looking girl!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)