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Sweet

Scleroderma Expert Vs Rheumy

31 posts in this topic

Hi,

I've just been reading recently about the difference of the Sclero expert and the regular rheumatologist. I've never seen the "expert" when when I asked my rheumatologist's nurse if he specialized in Sclero she said "Yes". I also asked him and he said "Yes". I don't see his name on ISN though.

 

Do most of you see an "expert" or just a rheumatologist?

 

Thanks,

Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet. I am from the UK as you know, but when I was seeing my own rheumatologist, he said to me after about 6 months that he had gone as far as he could with the knowledge of SD that he had. So he suggested I saw my doctor to be referred to a specialist in SD, which I did. Since then I feel that I have had the best care that is possible as far as treatment and monitoring is concerned. Even though I have a 150 mile round trip, it is definitely worth it for my own peace of mind. I hope this helps you decide which way to go.


Take Care,

 

Steve Dickson

ISN Assistant News Guide for RSS Newsfeed

International Scleroderma Network (ISN)

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Thanks Steve,

 

I appreciate the input. I have a 400 mile round trip as it is now, but I wouldn't mind driving further if I had to.

 

I've always thought I've been receiving very good care from my rheumatologist, but sometimes, I don't think he takes me seriously. A bit discouraging. I mean HE is the one that gave me the diagnosis but it's like he belittles the symptoms at times.

 

Love Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hey Sweet. I see an expert in sclero and lupus. She is a pioneer and very well respecred by her peers. Her name is Dr Rothfield and she works out of UCONN Farmington in Connecticut. Shes a tough cookie but worth her weight in gold I think.

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Sweet,

I see an expert. I have been seeing him since day one, so I cannot compare mine to one that is not an expert. I fly 900 miles each way for mine....and it's well worth it. I think that if traveling is not an issue for you, you should see the expert.

Smiles,

Jennifer

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Thanks Jen and Patty,

 

Oh my Jen, you FLY to see yours? I hope you don't have to go too often. OK, well this has made me curious now. I'm going to find someone in the State of WA where I live and see what I can do.

 

Thanks again everyone

Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet~

You bring up a good question. I have never seen a specialist, but as Steve said, maybe a Rhemy can take you as far as their level of knowledge can... and hopfully we can trust that they will reffer us to a specialist.

 

On the other hand, in some cases it is so important that the doctor not mess around with this illness! If it goes too far untreated, you loose precious time.

 

I feel that you have to take your own health into consideration. If you feel that you are not being treated with 100% care and by a doctor who understands YOUR body's scleroderma then by all means seek out a specialist.

 

I am in Oregon and I dont know of any specialist here. I do however trust that my rheumatologist is doing all he can for my health. When the time comes, I may have to go looking for a specialist close by!


*WestCoast*

 

********

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Sweet,

I just see a rheumatologist who has had several (about 50) scleroderma patients during his 30 year career. However, based on a couple of situations over the past 3 years I have discovered that I might know more about this disease than he does. when I got complete heart block, I said that the scleroderma caused it because it can cause conductive problems with the heart. He said "no it can't", then 2 weeks later came back with the comment "Now that the sclero has caused heart problems..." So I guess he went and looked it up.

 

Today I saw my pulmonary doctor and she recommended that I go and see the scleroderma specialists at the Mayo Clinic in Scotsdale. She said if for no other reason than to get a second opinion that my doctors in Albuquerque are treating my MCTD properly. I thought it was a great suggestion and am going to look in to it. Bottom line - you need to be seeing someone that has experience treating scleroderma patients, otherwise, they're just shooting from the hip.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hey Erin,

 

Thanks for your input. My husband says I need to "trust my rheumatologist more" I think what is hard is that I'm a nurse and sometimes, I just know too much and I can read between the lines when they are trying to blow things past you.

 

Janey,

My rheumatologist says he has treated MANY MANY Sclero patients and said he was trained by the best of the best and threw out some name that now I can't remember.

 

I think bottom line is sometime in the not too near off future I'm going for a second opnion with the sclero specilist. I found one at the University of WA.

 

Thanks again for all of your thoughts and info!

 

Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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HI sweet

 

My husband sees a specialist. He is involved with scleroderma research. The rheumatologist that diagnosed my husband was as worried as we were. When he gave us the diagnosis and the visits that followed it was like he hated to give us any results or news. I think it really bothered him. Our specialist is more upbeat and on the brink of all the research. I have been very pleased with him.

Lori


Lori

Scleroderma Spouse

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Sweet,

Even if you just went to see the specialist once to have peace of mind that would help. This may be a stupid question, but have you ever had a CT Scan and PFTs to check for lung involvement? My sclero expert (Dr. Fischer in Denver) referred me to a GI Dr, a pulmonologist that has special interest with lung/sclero related issues and a dr that specializes in Pulmonary Hypertension in Scleroderma....so these guys also have their connections with the doctors and I have so much faith in mine that I do fly to see him. I can explain that...I recently moved from Denver to Fayetteville, AR where there are no experts and really , Denver is not a bad place to visit! I've only had to travel once so far, and it'll be every six months. I have a primary care dr. here that is in contact with the Quarterback....Dr. Fischer.

Take care of your Sweet self! I understand your husband thinks you should trust him more, because in reality, maybe we should trust EVERYONE more, but I think in this case if you have the means to see an expert you should. I bet it helps a lot that you are an RN.

Jennifer

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Hey Jen,

 

No, I've never had a CT of my lungs or PFT's. My rheumatologist does listen to my lungs every visit and tells me he's checking for any signs of PH, but always tells me "they sound just fine".

 

I think you're right though, at least ONE visit to the Sclero specialist is in order.

 

Again thanks for everything!!!

 

Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Sweet, I found I needed both an "expert" and a very good local rheumatologist. My "expert" gave me my initial diagnosis and direction of treatment 3 years. ago. He personally calls me with test results and he gives me peace of mind and confidence. My local rheumatologist works with him.

 

At first I depended mostly on my expert, but now I feel my local rheumatologist is the most important. I need someone whom I can see quickly when I have a problem, orders my labs & tests, adjust my meds, etc. She coordinates my care with my other specialists. Somebody has to be in charge.

 

This is what a wrote CityMom (in her thread) today about her daughter. "She needs an experienced rheumatologist who can follow her regularly and in whom you have confidence. I have found a great variation in level of knowledge and care, even among "top" rheumys. I went to CA and and was diagnosed by an expert (even though his name is not on the ISN list). He is a prof at UCLA and author of several books. I later saw the head of Dept. of rheumatologist. at a medical school in my state. He was very vague and I felt he blew me off.

 

I found an excellent local rheumatologist who is as smart as any "expert." However, one of her partners, didn't even think I had scleroderma! He was the doctor social security asked me to see. Well, there was so much documentation & personal letters from my other doctors, SS actually approved my disability within a couple of months! I now see my "expert" in CA once a year and my local rheumatologist regularly. They work together. I asked my PC doctor who the best rheumatologist was in town--that's how I found her."

 

I hope you can be as lucky as I was in finding good doctors. I would suggest asking other nurses and doctors to whom they would take their mother/wife.

 

Warm wishes,

 

Dee

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Hi Sweet,

 

My primary doctor happens to be a rheumatologist and an internal medicine doctor. I also see a sclero specialist for my sclero problems. If I need immediate care my primary is always available. What I like about him is that he is honest and will tell me, "See Dr. Simms for this because I am not up on all of the latest sclero treatments." He is the best primary care physician in an HMO because he gave me an open referral to my specialist so I can go whenever I need to without calling his office every time to be referred.

 

It is worth it to see a specialist even if it is only once or twice a year.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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I see a specialist in scleroderma, Dr. Vivian Hsu in New Brunswick, New Jersey. She sees me 4 times a year. I don't have a local rheumatologist. I've been wondering whether I need one, so far this seems to be working okay. Originally, I also checked out my situation at Thomas Jefferson in Philadelphia, but decided on New Brunswick as it is closer to home.


ISN Artist

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I go to the University of Michigan Scleroderma Center. They are awesome doctors. Listening to your lungs doesn't always tell if you have a problem. I always passed that will flying colors. I did flunk out on the PFT's though. So, when I see my rheumatologist next month I will also see a pulmonary specialist with that apt. To discuss the situation. My primary care networks has a bunch of rheumies but none that specialize in sclero. But, I am still suppose to see one of them. That's a NOTA. So, I have to go out of network. My doctor wouldn't refer me to the rheumies at U of M. I go there and pay out of pocket. It is worth it to me. As long as I can afford it that is what I will do. Get your lungs checked. Very, Very important. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Sweet,

I live in western Montana (moved here from central Montana 6 years ago).

The rheumatologist I began with in 1991 sees patients 2 1/2 days/wk and is a researcher the other 2 1/2 days. She has served me well and I continue to see her once/year... she is well versed,concerning my case history, which gives me great comfort. My husband and I also have alot of confidence in the rheumatologist I see locally... every 6 months, presently, (unless problems arise).

 

You've received alot of feedback, but thought I would put my "two cents worth" in, considering we live relatively "close" to one another :rolleyes: .

 

My best to you!

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hey Sheryl and Susie,

 

Thanks for your input, the more the better!! Sheryl you made me think I'm going to ask my rheumatologist for a PFT. I've actually talked with him about being short of breath at times, but he blows it off....hmmm

 

Thanks for the advice.

 

Love Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet,

 

I see an expert too. I've just recently been diagnosed with ssSSc and have had good referals too to other specialists who've had experience with scleroderma. I'd seen rheumys before when I was looking for a diagnosis and was told the high ANA was nothing to worry about~ I'm fortunate to live a 20 minute drive away from really good doctors. Good luck with finding the right one for you. Be persistent!

 

JJ

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Hi Sweet,

 

I know I am coming in late on this thread, but thought I would chime in. I do not see a scleroderma "expert" per se. However, the rheumatologist I do see was trained at Mayo. Then again, I have not been diagnosed with Scleroderma (yet.....although my rheumatologist has written that he thinks I will eventually look like a limited scleroderma patient). I meet the criteria for CREST but my rheumatologist says he does not use that nomenclature. I was unsure of him and his treatment until I joined this board and learned that everything he has done and the drugs he is using to treat me is similar to what others here with similar symptoms are experiencing. I was having some shortness of breath 2 years ago and he did order a PFT at that time. My SOB is sporadic but it started happening again this past August. So, when I saw my rheumatologist in September I suggested we do another PFT. He told me he didn't think it was a problem in my lungs but thought it wouldn't hurt to get another PFT done. So, I do feel like he listens to me and is on top of any changes.

 

Warm wishes,

Heidi

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Hey JJ and Heidi thanks so much for your input.

 

I think I've decided to get a second opinion with a sclero specialist and I'm also going to ask for PFT's. I'm concerned my rheumatologist may be a little slack or maybe it's just me. I know others that see him that say he is the best!!!

 

Love Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi, Sweet!

I see a rheumatologist and I consider her an expert in scleroderma. She is treating a number of CREST patients and seems to know what she's doing. She treats me with respect and takes my questions and complaints seriously. She is also open minded and recently asked for the address of this forum. She wanted to give it to her other CREST patients.

Recently, she began consulting with a specialist in Houston. It's late and I am too tired to go find the Houston doctor's name, but she's written a book on Scleroderma which is excellent. I believe her name starts with an "M." By the way, I think this Houston doctor who is a specialist in Scleroderma is a rheumatologist.. I think scleroderma falls under the specialty of rheumatology. Even though it falls in that field, though, not all rheumatologists are specialists in that particular area. I would certainly want someone who is up to date on all the latest treatments and drugs. I wouldn't put up with a doctor who didn't take my disease seriously and believe me when I talk about strange symptoms!

 

Mary in Texas

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