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Questions about seeing a Scleroderma Expert


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#1 TamaraB

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Posted 28 July 2011 - 12:28 PM

I was just wondering is there a benefit to seeing one of the scleroderma experts over a regular rheumatologist? Do they handle everything, like GI problems as well as things that are only related to the scleroderma? My frustration level is really rising with primary care doctors and some of the health issues that are associated with scleroderma. Before I try to make an appointment with one of the experts, because the nearest one to me will be about a 6 hour one way drive, I want to know is it worth the time? Also, if anyone has used the experts in Texas, do they require referal and how well did you like the doctors there?

Anyone, PLEASE, feel free to sound off about this! Thank you!

#2 Joelf

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Posted 28 July 2011 - 01:55 PM

Hi Tammy,

It is recommended that you consult a Scleroderma specialist as many rheumatologists just don't have the expertise to deal with such an unusual and complex disease as Scleroderma.

I've included a link to Scleroderma specialists which I hope might be helpful to you, as being in the UK I can't give you any first hand experience of experts in Texas.

I actually deal with three different hospitals plus my general practitioner (primary doctor in US). I go to a top lung hospital, The Royal Brompton, who deal with my lung fibrosis; a top Scleroderma hospital, The Royal Free, who oversee my treatment for Scleroderma and a local hospital who thankfully had the good sense to realise they didn't have the expertise to deal with lung fibrosis caused by Scleroderma and referred me double quick to the experts for which I'm eternally grateful. Whilst the lung and Sclero hospitals aren't 6 hours away in my case, it's still a bit of a journey to get to them, but I do consider that it's worth it for the treatment I've received! ;)

I do hope this advice has been helpful to you and that you're able to get a referral to a Sclero expert without too much of a problem.

Jo Frowde
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#3 Amanda Thorpe

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Posted 28 July 2011 - 02:33 PM

Hello Tammy

It's scleroderma experts all the way for me I'm afraid, I wouldn't dream of going to a regular rheumatologist if you paid me. The thing is, even if your scleroderma experts refers you out for say gastrointestinal issues, it should be to a gastroenterologist familiar with scleroderma and all your tests etc should come back to your scleroderma expert who should take overall responsibility for you care. Well that's how it works for me but I am in the UK.

My journey to the specialists takes about 2 to 2 1/2 hours which isn't that long but it is for someone with my bladder issues, nevertheless I wouldn't go anywhere else.

The one thing seeing an expert does is give you peace of mind, well it does me anyway!

Here are the details for the scleroderma expert in Texas:

Institution: Univ. of Texas-Houston Medical School
Div. rheumatologist and Clinical Immunogenetics
6431 Fannin, MSB 5.270/ Rm. 5264
Houston, TX 77030

Coordinating Investigator: Maureen Mayes, MD, MPH
Other Local Participants: Arnett, Frank C, MD
Reveille, John D., MD
Warner, Noranna B., MD, PhD

Telephone Number: (713) 500-6900
Fax Number: (713) 500-0580

The Institution: Radiant Research Dallas is no longer open.

Take care.
Amanda Thorpe
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#4 Snowbird

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Posted 28 July 2011 - 06:56 PM

Hi Tammy

Definitely, a scleroderma specialist all the way. I fully agree, as mentioned already they will also connect you with the right specialists for any symptoms and reports would go back to them as your overall health care provider. They have connections to get you where you need to go as well (for other specialists you might need along the way). Also as Jo mentioned, her first line pretty much sums it up. I hope you keep us updated on what you decide and how you make out.
Sending good wishes your way!

#5 Jeannie McClelland

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Posted 28 July 2011 - 08:39 PM

Me too - a scleroderma expert for sure. I have the 'sine' form (no skin hardening but plenty of internal involvement) and that will really make most primary care physicians scratch their heads. They often seem uncertain whether any symptom is due to scleroderma or not, what to do about it, and most of all afraid of doing anything that might interact with the treatment the scleroderma expert has going.

A long drive is horribly inconvenient and you wouldn't want to do it too often, but in such cases, a scleroderma expert will often know and/or be willing to work with a local rheumatologist for the routine care and you can save the trip for new symptoms that warrant the trip (or in my case, when I want to go shopping! :lol: )

Best wishes,
Jeannie McClelland
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#6 debonair susie

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Posted 29 July 2011 - 11:21 AM

Hi Tamara,

If you have the latitude/option of either (which I really don't), I must agree with the majority here.

I did/do have a very competent rheumatologist, in which I have the utmost confidence. However, if I were to have access to a Scleroderma Specialist, I too would more than likely make the move.

Note: I DO like my rheumatologist and have great rapport with her)

Please keep us posted and let us know how this all goes!
Special Hugs,

Susie Kraft
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#7 marsha

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Posted 29 July 2011 - 02:40 PM

Tamara,

I have to agree with the others; I made my first haul to a sclero specialist this summer and was AMAZED!!

It takes me seven and half hours to get to him. He is going to guide and work with my rheumatologist and guide him as my rheumatologist has only seen a few cases of scleroderma. For a year all the doctors I've been to have said "I don't know" for every question I've asked. I've learned more from these folks here and the web then any doctor has ever told me up to seeing my scleroderma expert. I am lucky though cause I have family nearby so the trip isn't quite as costly for me.

Good luck to you,

Marsha

#8 TamaraB

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Posted 31 July 2011 - 07:19 PM

Thanks everyone for that "push" that I think I may have needed. I have debated this issue with myself several times and have always convinced myself that I don't need the specialists yet. Then something serious arises and I debate the topic again.

I have had a definate diagnosis of the limited systemic type for a few years. The first rheumatologist I saw (about 10 years ago) said "Well that sounds like Raynaud's but your too young and that disease is too rare." He literally sat in the office with me for less than 10 minutes and dismissed the visit. The second rheumatologist did all the labs and they came back positive. Positive was the only answer I got, she would never "title" it but I think that was more for insurance purposes. She would treat the symptoms that I have though. The third rheumatologist came to be because I was on the border of having to have the tip of a finger removed (from the Raynaud's) and the plastic surgeon was asking me about the scleroderma, what type and so on. When I had to tell him that I wasn't sure he referred me to another before he would do anything, for which I am VERY grateful!! The third rheumatologist really seemed to have the most knowledge, they were able to do a series of 3 injections in my throat and save my finger! :emoticons-line-dance: He, unfortunately, moved his practice and I have not been back to a rheumatologist in a couple of years.

I think the experiences have had a bit of a "merry-go-round" affect on me and at this point I just feel exasperated and at a loss of what to do next. Most of the problems that I experience are symptoms of scleroderma but I'm not sure that the scleroderma is the cause...mercy, it's alot to try to wrap your mind around. I think that I really just need someone to take me by the hand, walk me through it, answer my questions, help me figure out what is being caused by the scleroderma, what isn't, what to watch out for and what to expect. Is that too much? :P

Okay, so now that you guys should probably give me some cheese to go with my whine :lol: THANK YOU ALL FOR YOUR INPUT! I THINK YOU GUYS ARE THE BEST!! :bravo: