Sweet

Scleroderma Expert Vs Rheumy

31 posts in this topic

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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I see a rheumatologist who specialises in scleroderma and I have a 60 mile round trip.

I was passed around for years with a rheumatologist who was okay but tended to pass me on to other doctors at his clinic. I have to say that this made me annoyed because more often than not, I had to explain my condition each time I went.

Now, my rheumatologist knows me and her clinic is solely for connective tissue patients so everyone is aware of my condition.

It can be a drag especially if you're not feeling too well but well worth having someone who you can talk to at the end of it.

 

I wish you well and you have some good replies to ponder on.

 

Best wishes

Barbs xxx

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Thanks Barb,

 

I guess I should be glad I'm not getting shifted around. I always see the same doctor. I think I just need to have a very frank conversation with him, which I plan to do when I see him next month. I think he needs to know how I feel about him at times. I did this one other time and things were great for a long time - but things seem to be slipping.... Maybe I have too high of expectations.

 

Love you all, thanks for your help.

 

Sweet


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Sweet!

 

I see both! Although, I'm not sure which is best at this point, as they are the two of my doctor's that can't agree where my pain is coming from!! LOL!

 

Good luck! Warm and Happy to you! xo Vee


Happy people don't have the best of everything, they just make the best of everything they have!

 

Warm and Happy to you! Vee

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