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Biomarker for Diffuse Scleroderma skin has been discovered!


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Looking for a Doctor In Connecticut


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#1 parris68

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Posted 10 July 2008 - 12:51 AM

Hi

I dont really know what to do. I have I have seen a Doctor at Unconn. First visit Looked at me swelling fingers curled blood vessels in fringers, Extreme pain In upper legs and lower legs. He told me he was pretty sure I have Sclerderma. Went thru A series of test , He said he would call and go over test. He never called,so I called . The sec. said he called back. He did he said every looked fine. not in heart or lung. Soi saw him a couple more times because of pain , he changes my Rx evry 3 months because it wheres off. He also said I have fibromygalis. I feel I dont have characteristics of Fibro. Not pressure point.s Last visit after of my series of test, He walk in to the room why are you here today. I was like twoweeks ago you sent me for my test. He opens computers looks over test results quickly and says no change,But I find it funny because the man who was given me my breathing test say I had a decrease in intake. He wasn't suppose to tell me. the other day I was in alot of pain so I called to say the rx was not working and it hurt to walk or use my arms. He called back 2 days later and said he did not know what to do and put me on a depression Rx . I do not think I am Depressed . I am In PAIN. He said probably because I am not sleeping. I said what I never said that. I sllep very well.He got upset and said maybe I should contact my general Dr.And go to a pain treatment center and said goodbye. hung up. I was like first visit you said I have diffuse scleroderma ,I am at a lost of words, My fingers are swelling and are getting shiny and my feet skin are shinny and tight. What is wrong with me . the pain is extremely bad and I dont know what to do, Please someone help??

#2 LisaBulman

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Posted 10 July 2008 - 02:29 AM

Hello Parris,
Welcome to the Sclero Forums! I am sorry you are here because of this illness but hopefully you will realize you are not alone. We are all here to support one another and offer advice when we can. Take a look at the list of Scleroderma Specialists on our www.sclero.org website.

I have a fabulous doctor in Boston if you are willing to make the drive up!

Hugs,
Lisa


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#3 Gidget

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Posted 10 July 2008 - 03:28 AM

Hi Parris68,
Yes, I went to UCONN as well. It was a horrible experience and I have never been back. The doctor I saw didn't like being asked questions, didn't know about the SCOT trial, and just in general my experience was both unprofessional and bizzarre. So, I've never looked back. I have a fantastic doctor that I see in Danbury. I will PM you with his contact info. He is terrific. I live in FL and fly up and see him every 3 months. I told him that he will never get rid of me. Anyway, I will PM you with the details. Regards, Gidget

#4 luvbnmom3

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Posted 10 July 2008 - 04:00 AM

Welcome! I'm so sorry you're going through all this stuff, it is bad enough not knowing what is going on, but then to have Dr.s go back & forth with diagnosises on top of that is even tougher.

I heard there was a Scleroderma center or something in Mass. Maybe that's where Lisa's is. I was JUST in Boston too a few weeks ago...wish I'd of known ahead of time I'd of tried to make an appt. WAY in advance...lol. Hang in there!

#5 janey

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Posted 10 July 2008 - 05:36 AM

Parris,
I am so sorry to read what you are going through physically and emotionally with your doctor. It sounds like the pain you are in is enough to deal with. Please seek out another rheumatologist or even better, as Lisa suggested, a scleroderma specialist. It's so important to have a good doctor! So many of us have switched doctors so many times we've lost count. Don't stop until you get one that will listen to you and help you, rather than just brushing you off.

I'm very glad that you have found us! Please keep us informed on how you are doing and any progress you make in finding a new doctor. In fact, visit us anytime with questions, advice or just to let us know how you are doing. Welcome!

Big Hugs,
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#6 Snowbird

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Posted 10 July 2008 - 09:43 AM

Hi Parris68

Sorry to hear you are having such a difficult time, both with pain and the doctor. I agree with the others, it is best if you go to another rheumatologist and/or scleroderma specialist who can help with all of your symptoms to get you some relief and discuss any kind of diagnosis you have with you.
Sending good wishes your way!

#7 Annie N

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Posted 10 July 2008 - 12:26 PM

Hi Parris,

I live in CT also. I see a rheumatologist in Milford/New Haven - she's OK but I do fly out to Michigan every two years or so and see a scleroderma expert who pretty much runs the show. I also see a pulmonologist at UConn and he's also OK.

My own take on it is that you'd be well off getting a second consultation. There are some pretty big studies going on in Boston if that's as convenient as Danbury.
And Gidget, if you'd let me know the name of the doctor in Danbury, I'd appreciate it as well.

Good luck, Parris. I really hope you find the answer to what's going on and get some appropriate treatment. It's so hard to live in pain and not know what's happening to you.

Lots of luck,

Annie

#8 Sweet

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Posted 10 July 2008 - 12:54 PM

Hi Parris

Welcome to the Sclero Forums. I'm so sorry you are getting such a run around! I agree with the thought that you need to find another doctor. I hope there is one on the list Lisa gave you that will be able to help.

I have one comment on the anti-depressants - they really do seem to help people that have chronic pain. I went on them for a couple of years and they really helped for awhile.

Please keep us updated. I wish you the very best.
Warm and gentle hugs,

Pamela
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#9 jefa

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Posted 10 July 2008 - 09:14 PM

Hello, Parris, and welcome to the ISN Sclero Forums. I am sorry you are having such a difficult time with this, but you have been given some good advice from other members. We are not doctors here, but everyone who answers has dealt with some level of what you are experiencing. I wish you luck finding a doctor with the appropriate expertise and with whom you can relate. In your search, however, don't discount the advice you have been given. As Sweet says, for example, many of us are on low dose antidepressants. I personally reacted negatively to the idea at first, but once I decided to take my doctor's advice on the matter I was grateful for the benefits. The advice about a pain management clinic is also quite sound. I recommend that you read our page on Emotional Adjustment and Scleroderma which discusses coping with scleroderma and pain management among other things.
Warm wishes,
Jefa

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