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My Consult at The Hospital for Special Surgery, NYC


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#1 docmartenmom

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Posted 08 February 2011 - 10:16 AM

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

#2 Joelf

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Posted 08 February 2011 - 10:56 AM

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.

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#3 docmartenmom

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Posted 08 February 2011 - 11:23 AM

Thanks Jo, I will definitely keep you posted :)

#4 Amanda Thorpe

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Posted 09 February 2011 - 01:44 PM

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
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#5 Shelley Ensz

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Posted 09 February 2011 - 02:16 PM

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
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#6 docmartenmom

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Posted 09 February 2011 - 07:55 PM

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

#7 kmbhoya2000

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Posted 09 May 2011 - 02:40 PM

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!

#8 Amanda Thorpe

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Posted 10 May 2011 - 11:09 AM

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
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#9 debonair susie

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Posted 10 May 2011 - 02:32 PM

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
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#10 docmartenmom

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Posted 12 May 2011 - 05:30 AM

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

#11 Joelf

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Posted 12 May 2011 - 06:17 AM

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:

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#12 Amanda Thorpe

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Posted 12 May 2011 - 12:32 PM

Hello Lori

Excellent! It must be great to feel great again!

Take care.
Amanda Thorpe
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#13 debonair susie

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Posted 13 May 2011 - 11:06 AM

What great news, Lori!! Don't you just love that?!

As for adding more meds, I can't blame you at all, as I feel the same way :blink: . However, when it's warranted, as you know, it's great to feel better.
Special Hugs,

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#14 docmartenmom

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Posted 13 May 2011 - 10:09 PM

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