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Scleroderma Expert Vs Rheumy


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30 replies to this topic

#21 Sweet

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Posted 03 November 2006 - 10:24 AM

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)

#22 JJ-Knitter

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Posted 04 November 2006 - 04:47 PM

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

#23 Heidi

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Posted 07 November 2006 - 03:56 PM

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

#24 Sweet

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Posted 07 November 2006 - 06:53 PM

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)

#25 bookworm

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Posted 07 November 2006 - 07:46 PM

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


#26 Sweet

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Posted 08 November 2006 - 06:04 AM

Thanks Mary!

Love Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#27 CFMBabs

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Posted 10 November 2006 - 11:30 PM

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

#28 Sweet

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Posted 11 November 2006 - 07:30 AM

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)

#29 Vee

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Posted 12 November 2006 - 02:38 PM

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

#30 Sweet

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Posted 12 November 2006 - 04:57 PM

Hey Lisa and Vee,

Thanks so much for your input. It helps so much knowing what other are doing!!

Much Love, Sweet

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#31 LoriNC

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Posted 15 November 2006 - 02:52 AM

Sweet,

Get those PFT's, six minute walk test and possibly an echcoardigram for a bssline of comparison, if no involvement then you have agreat baseline for latef comparison..

My Dr is a rheumatologist that studied at MUSC with the sclero DR's. She requested the above tests immediately and has schedule some evry 3 months while others once a year it just depends which way my disease wants to travel.

Take care

Lori