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My 1st Visit At The Scleroderma Clinic


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8 replies to this topic

#1 kathygirl

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Posted 16 June 2007 - 06:18 AM

I found a huge difference between the rheumatologist and the clinic which treats nothing but scleroderma patients and does research. They really want to hear what you have to say and want to work with you and explain things so you can understand. I asked my rhumie for a referral there. What I don’t understand is why the doctor didn’t automatically send me there.

The doctor at the clinic knew immediately the sores on my arms were infected and the thing on my finger is a digital ulcer. She gave me antibiotics, something Ive been wanting for the last few months but no one would listen. She is going to schedule me for a new picc line for next week ( just had one put in last week to get blood tests then it was taken out) Then blood tests, then I start cytoxan. I will also be able to get an endoscopy and colonoscopy.

She said first she wants to hit me with the cytoxan to stabilize my disease. I also learned you start counting time from the very first symptoms. She figures Ive had scleroderma for at least 5 years not 2 years like I thought. So far I don’t have a lot of internal problems and hopefully at this point they won't progress too much.

She also told me that the classifications of limited and diffuse is a bit old fashioned, just because you have limited you can end up with a lot of diffuse symptoms. The only real difference is with limited the skin thickening only progresses to the elbow and can include the face, where with diffuse it can be much more severe: arms, legs, stomach.

She told me to call any time with any concerns I have . I have an appointment again in 6 weeks. The appointments are for an hour at a time. She is also setting things up so someone will come to my home to clean my picc line a couple of times a week as well as come here to take blood for my tests. She said she would try to get the arthritis society to come to get me started on hand therapy.

#2 WestCoast1

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Posted 16 June 2007 - 05:22 PM

Wow Kathy,
So thats the difference between a doctor and a specialist.....that is very interesting. I think that the appointment that you requested was a great thing! It sounds like you spoke to some bright people that really understood what you were going through. I find it very interesting that you had this for possibly 5 years and no one really took notice. I think you are on your way to feeling healthy again. :) Did you have to travel to see this specialist?
*WestCoast*

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#3 barefut

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Posted 16 June 2007 - 05:58 PM

Wow....where are you? Wish we had a scleroderma clinic here. Maybe I could travel.....

Glad you have such good doctors and are now on your way to proper treatment and feeling better soon.

Barefut

#4 Sharonvandee

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Posted 16 June 2007 - 07:23 PM

I am off to a scleroderma clinic soon and this post gives me the hope that the 4 hrs travel will be worth it as the DR I have seen so far say they dont know much about scleroderma or just wait and see how it evolve with no management stratergies at all. I too am hoping to get some answers to all the questions I have.

I am happy you are on the right tracks
Kindest Regards

Sharon

Diagnosis Scleroderma-crest, Scolliosis, Asthma, ILD, Plueral Fibrosis, GERD, Hiatus hernia, Anticardiolipin positive, ANA positive

a little bent and broken and almost beyond repair!

#5 peanut

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Posted 16 June 2007 - 08:57 PM

Kathy,
thanks for posting. I see a rheumatologist who's very good. He reacted very quickly once I was diagnosed with cytoxan, etc - kinda similar to yours. I've never met anyone who had the same experience and never knew why - I never asked - but through yours I can see why.

It's good to hear your under good care,

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#6 kathygirl

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Posted 17 June 2007 - 05:41 AM

Good Morning everyone,

I went to the Rebecca MacDonald Centre for Arthritis and Autoimmune Disease(RMCAD). It is through Mount Sinai Hospital In Toronto Ontario Canada. They are a member of the Scleroderma Clinical Trials Consortium (SCTC). The scleroderma clinic is located there.

One piece of advice I can pass on is if there are any research groups in your area it might be worth joining. They seem to be the ones with the latest information and want to work with you. Or perhaps look for a teaching hospital.

This forum actually started me thinking that my rheumatologist wasn't doing enough. I was learning alot more here then from my doctors.

This morning Im feeling miserable ,I guess the antibiotics are creating a little war inside. My skin is really dried out and tight. Oh well, short term pain for long term gain.

Kathy



#7 Sweet

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Posted 17 June 2007 - 09:42 AM

Kathy,

Sounds like you had a GREAT visit!!! It is such a wonderful feeling to be seen by a doctor that you feel is listening to you and takes the bull by the horn so to speak.

Good Luck!!!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#8 jefa

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Posted 17 June 2007 - 10:30 AM

I am sorry you are feeling miserable today, but I know you will continue to be positive about it. Make sure you allow yourself plenty of time for rest during your treatments and keep us posted on your progress.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#9 emmie

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Posted 17 June 2007 - 04:07 PM

Kathy,

I am very very happy that you had this fantastic experience with a specialist at a scleroderma clinic that is a member of the SCTC.

I was not as fortunate. The rheumatologist I was formerly seeing was a scleroderma specialist at a scleroderma clinic that is a member of the SCTC. She is the doctor who told my husband that there is nothing to be done for the fatigue, that if she had the answer for that she would have the Nobel prize; she also told me shortly before I "fired" her that I looked so well, had I had botox injections? What????

I relate this story simply as a reminder that we have to be careful that we evaluate our doctors as individuals no matter where they practice.

May we all be so lucky to find one as good as the one Kathy has found!

xoxo emmie