• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Sign in to follow this  
Followers 0
docmartenmom

My Consult at The Hospital for Special Surgery, NYC

14 posts in this topic

Hi Everyone,

 

Yesterday afternoon I had my consult with a scleroderma specialist in NYC - she was very thorough, easy to talk to and very informative. She said since I am not presenting with the skin affects of scleroderma, she is leaning towards connective tissue disease - waiting on blood results for analysis. I may have the type that attacks inwardly, that still has to be ruled out - but I present with Barrett's, pernicious anemia, atrophic gastritis, intestinal metaplasia, Raynaud's, Sjogren's and Fibromyalgia. She also had my hands x-rayed and prescribed Plaquenil for me. My hands are swollen and arthritic. I see her again in 2 weeks. For anyone out there who is dealing with rheumatologist issues, please go to someone with expertise in this field - you can save yourself a lot of time and worry. Lori

Share this post


Link to post
Share on other sites

Hi Lori,

 

That's great news that you've had such a good consultation with an excellent Sclero specialist. I agree, it really is so much better to be dealt with by someone in whom you can have complete confidence. Even for an expert Scleroderma is a difficult disease to diagnose, which is probably why they haven't been able to specify exactly whether it's Sclero or a mixed connective tissue disease.

 

I do hope that the Plaquenil gives you some relief; I haven't been on that particular drug myself, so can't speak from my own experience, but quite a few of our members are on it so I'm sure that they'll be able to offer advice about it to you.

 

Do keep us posted on the result of your further consultation in two weeks time.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Lori

 

No organ involvement so far is so good! As you say you're in good hands, keep us posted on how things go.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Lori,

 

I'm glad your appointment went well. I'm sure you are curious about what your test results will be in a few weeks -- and so am I. Please keep us posted on how you are doing, okay?

 

:emoticon-hug:


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.

Share this post


Link to post
Share on other sites

Thanks Amanda and Shelley, I will be sure to fill you in on my visit on 2/22/11 - one thing is for sure, my gastro intestinal parts are a train wreck - I had an upper endoscopy done by my gastroenterologist and he found intestinal metaplasia of my esophagus and stomach, Barrett's Esophagus, pernicious anemia and atrophic gastritis - yeeha! I was told I will have to have annual UEs for life, but since I get weekly B-12 shots for life I can deal with that.

 

This is DEFINITELY a difficult disease to diagnose. Have any of you been using Plaquenil? The doctor said it will take 3 months before it has any effect on me. She prescribed 200 mg/daily.

 

Lori

Share this post


Link to post
Share on other sites

I was lucky enough to get in to the Chief of Pediatric Rheumatology at the Hospital for Special Surgery 18 years ago, and I still see him to this day. He is the best, is unbelievably brilliant, but is so good at responding and answering all questions in a way that is easy to understand. My whole family had a terrible bout of the flu this January, and with my different health issues, I really was hit hard, and on a Sunday I emailed him because of some concerns I had, and he returned my email within a few hours, saying he couldn't help me because he was in China teaching, but if the problems continued to contact the physician on call at HSS and they would be able to send advise me on tests to get done. HSS and the doctors there truly are amazing!

Share this post


Link to post
Share on other sites

Hello KMBhoya2000

 

Welcome to the forums, I don't think I've said "hello" to you before! Hanging on to a good doctor is a great idea and you clearly reap the benefits of it.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Lori,

 

I am so happy to read that you have such a wonderful Scleroderma Specialist in whom you have great confidence and rapport. :emoticons-yes:

 

I too, am anxious to hear about your lab results, plus how you do on the Plaquenil, as I've heard how well it has worked for several on our forums!


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Everyone!

 

I've now been on the Hydroxychloroquine for 3 months and I can tell you the exact day it started working - I woke up and felt an energy I hadn't had since 2008 and I literally bounded out of bed and started dancing LOL I went for my base line visual field test and all is good, so I am hoping this will help make life more bearable. Right now, I take 400mg/hydroxychloroquine daily, Lanzoprazole, 1,500 mg/Nabumetone daily, 1,000 units B12 weekly, 50,000 units Vitamin D weekly and then some. I was supposed to start Lyrica (750 mg) a month ago but the thought of yet another pill and the side effects have me a little nervous. _ Lori

Share this post


Link to post
Share on other sites

Well, Lori, that certainly is good news that you're feeling so much better! :emoticons-line-dance: I can empathise with that as I think I didn't tend to realise how bad I was actually feeling until I felt better!!

 

I'm so pleased that you're much improved on your medication and also that your base line visual field test was good.

 

May your improvement continue ad infinitum!! :high-five:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Thank you all, and I really hope we have more pain free days ahead, all of us. Enjoy the weekend :) Lori

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0