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#1 emmie


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Posted 04 November 2009 - 06:13 PM

It's been a while since I have been active on the forum and wow! Things look wonderful! It will take me a couple of years to explore everything, and I'm not exaggerating that time frame! Although I have not been active, I have checked in from time to time. When I first came across these changes I was totally impressed. Congratulations to the success that all of your planning and hard work have achieved. Everything is such quality--especially the people!

Most aspects of my scleroderma have calmed down. Cellcept seems to have helped me a lot: the skin on my fingers, hands, wrists and temples has softened; I have not had a case of the Witchy Itchies; my PFT numbers have improved and the Raynaud's is stable since the radial and ulnar sympathectamies. We are still working on managing the digestive aspects.

Right now I'm in the process of having all of my teeth removed due to an ongoing cycle of repair 2; 3 more break down; fix them. Two different teeth will go bad, and they are probably teeth that were already worked on 6-8 years ago. My mouth has become a black hole for way too much $$. I have a healthy dental phobia, so believe me I have been a faithful flosser/brusher my whole life. (In fact, I continue to floss religiously up until the day I lose them.) The problems stem from autoimmune diseases exacerbated by further mouth drying medications. Not a fun process but neither are continual root canals, fillings, etc. Not to mention the fact that my teeth look pretty crummy at this point.

Janie, is it you to thank for the articles under autoimmune thyroiditis about encephalopathy? That being my biggest trouble maker, I was so grateful to see this disease that nobody has ever heard of actually covered with some good information. I printed one of the referenced articles to show my doctor in case he doesn't have this one for our appeal to have IVIgG infusions approved and covered by my insurance company. :thank-you:

Anyhow, nice to say hi to those of you who have been here since 2005 or so and hi, nice to meet you to those of you who are new friends. Sorry you're here, but ISN helped me learn how to make scleroderma just another part of my life--not my whole life. It's a great place, isn't it?

hugs to all,

#2 janey


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Posted 05 November 2009 - 04:59 AM

It is so good to hear from you!!!! The best part is hearing that many of your symptoms have stabilized. It just takes finding the right cocktail I guess. My cocktail also includes cellcept and it seems to be doing a pretty good job for me as well.

Sorry to hear about the teeth! Yep- you can brush and floss all day but if you have the bad teeth gene or dry mouth, it just doesn't seem to matter. Hopefully your gums are in good condition. I just had my bi-yearly checkup and cleaning yesterday and got the thumbs up on good gums. Of course all my molars (except one) have crowns so no new cavities or cracks there. Well, I know it's not going to be a fun process, but I do hope it goes well and your recovery is short and sweet. I taste lots of sweet, yummy soft foods until you can get your dentures.

Thank you for your comments on the medical news! We have a marvelous news team that does tons of research which I sometimes have a hard time keeping up with, so you thanks is appreciated by the whole team. It's a great group! I'm thrilled that you are using one of the articles to get your IVIg approvals. I'm still getting my infusions. It's been 5.5 years now and for me, it's been the best treatment of all. Not too crazy about the 3 days at the infusion clinic, but I do get plenty of downtime.

Again - thanks so much for stopping by to say hello and let us know how you are doing! Hope to see you more often.
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#3 Shelley Ensz

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Posted 05 November 2009 - 04:11 PM

Hi Emmie,

Welcome back to Sclero Forums! All us old timers have missed you and the new ones will be glad to make your acquaintance, I'm sure.

Here are some welcome back flowers for you: :flowers:
Warm Hugs,

Shelley Ensz
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.

#4 emmie


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Posted 05 November 2009 - 04:31 PM


The flowers are beautiful! And they smell so good, too. :thank-you:


#5 barefut


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Posted 11 November 2009 - 05:47 PM


Hi - so good to hear from you. Glad the Cellcept has been doing good things for you but so sorry about your dental issues.

Thanks for checking in with us and post again soon!

Missed ya,

#6 Sweet


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Posted 12 November 2009 - 03:02 PM

Hi Emmie!!

It is so nice to hear from you again! I'm glad things seem to be a little more calm in the disease category, but I'm so sorry about your teeth. :temper-tantrum: I hope you can get dentures and be a happy camper, and give us a big smile!
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#7 Snowbird


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Posted 12 November 2009 - 03:16 PM

Hi Emmie

It's so nice to hear from you. I'm sorry to hear you are having all that trouble with your teeth but am also glad that some other symptoms are under a little better control now....let's hope it keeps calm for an eternity for you! :D
Sending good wishes your way!