Dr Clements Ucla
Posted 01 January 2007 - 03:09 PM
Posted 01 January 2007 - 04:17 PM
Posted 01 January 2007 - 05:19 PM
Dr. Philip Clements is a very prominent world expert in scleroderma.
The SCTC is a worldwide organization of the top scleroderma centers conducting peer-reviewed international research for scleroderma. By the same token, the UCLA center is a stellar scleroderma center.
I don't know what the "two week treatment" is all about. But regardless, if you are nearby, it would probably be a good idea to have a consult at a scleroderma expert center. That's the best way to be alerted for any clinical trials or research registries that you might be eligible to participate in, and to hopefully get the very latest treatment advice.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 15 January 2007 - 08:16 AM
I currently only have skin/joint involvement but am concerned at how fast it's progressing. My first symptoms were swelling hands with minor pain in May 06. This has progressed with skin involvement from fingers to shoulder, toes to hips and some in the neck/cheek area. So far all my organs are clear.
I am interested in any additonal info on Dr. Clements at UCLA. I live in southern California and this is the closed Sclero center to me. I tried to see Dr. Furst but was told he is no longer accepting patients. My rheumatologist is not very aggressive. Any info/contacts of specialists or support in Southern California/San Diego County would be helpful.
I am currently on:
(seeing PT for hands, feet and legs weekly)
Posted 15 January 2007 - 08:38 AM
I see that this is your first post here to Sclero Forums, so I wanted to welcome you! I'm really sorry that you have been diagnosed with Diffuse Sclero. You will find a lot of information, support and friendship here.
I look forward to getting to know you better!
Posted 15 January 2007 - 09:46 AM
Welcome! I'm sorry you are here due to your diagnosis of scleroderma, but as you already know - you have found a great place for information and support.
Now that you have found us, we hope you visit often. Again - Welcome!
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 15 January 2007 - 10:40 AM
Thanks so much for the response! I am sure this support will be helpful. I am unsure if the following should be posted on this subject forum for elsewhere. Please let me know.
I also have Raynaud's Syndrome to go with the Sclero. I am seeing PT/OT weekly right now. My Hand Therapist changes/adds to the exercises each time and checks to be sure I am performing them correctly. She also measures my ROM monthly to show improvement or not, and sends the results to my rheumatologist.
I have been seeing a Hand Therapist weekly since November. I begin seeing a PT tomorrow to keep movement on feet/legs. For my hands, I do exercises at home 2-3 times per day. I expect these visits to morph to monthly at some point but my progression is so fast right now I want to be sure I am doing everything I can. Is anyone out there agressively treating skin involvement? With meds or alternatives? My rheumatologist says there is nothing to be done. I have a recommendation for an accupunturist from a interal med doctor(friend). Since this is covered by my insurance (surprise) I thought it would be worth trying. If anyone has experience I would love to hear from them.
(the following my help someone) To perform my hand exercises, I need to be sure my hands are warm and skin is moisturized before starting. I used kitchen rubber gloves and do some dishes in the sink or just fill a sink with very warm/hot water and leave my hands in (with the gloves on) for a few minutes. Then use a lotion for massage. I am planning to purchase a parrafin spa (my hand therapist uses one each appointment). I really feels good (like going to a spa) and that's half the incentive.
Since I have tightening on the forearm thru to my arm pit, I also stretch / extend my arms overhead to try to keep as much motion as possible.
Is anyone else seeing a hand therapist? I have decided that aggressively addressing PT/OT is critical to quality of life with this diagnosis. My insurance actually covers 24 visits a year (not bad) but I may pay for more if I feel I need the PUSH to keep going. I am very lucky to have a supportive husband and kids. Sometimes the drive to do this on my own is tough to maintain. I expect it will get harder.
Have a Happy! Laurie
Posted 15 January 2007 - 11:57 AM
You have come to the right place! I was just diagnosed with CREST which is limited scleroderma in December 06. My skin hasn't started hardening. I have Raynaud's, watermelon stomach, and esophageal problems. I also have fibromyalgia, and Sjogren's. I am sorry that you are going through so much. I am sure that it is very painful!
Posted 15 January 2007 - 12:49 PM
I am a Laurie too!!! And I also live in San Diego. I have been diagnosed with Scleroderma for a little over a year. I have CREST and Raynaud's and fibromyalgia. I have been to see Dr. Furst at UCLA and Dr. Medsger at the University of Pittsburgh and I have a north county rheumatologist who I think is pretty good. If you would like to speak to someone else with this disease, send me a private message and I will send you my phone number. Welcome to this forum!