Discussions

Clogging filters on plama donation machines

Kzoo
  • By Kzoo · Posted April 12, 2014
  • In General discussion · 37 replies
  • I finally had a discussion with Dr. Schiopu at U of M appointment about the fact that several of us with scleroderma will clog filters and shut down the plasma machines and are most curious to find out ...

Coffee

Kzoo
  • By Kzoo · Posted April 12, 2014
  • In General discussion · 18 replies
  • I had been instructed to never drink coffee with Raynaud's, so I hadn't had a cup of coffee in over a year. I had a house guest who left behind a fabulous bag of coffee..so I thought 'Seriously..how much ...

When You Dream, are you well?

Brene
  • By Brene · Posted April 12, 2014
  • In General discussion · 16 replies
  • Yesterday when I woke up, it was one of those days where I remembered what I had dreamed that night. As I reflected on the dream, I realized that I am always well in my dreams. I also am several decades ...

Guttate Psoriasis

oldpainter
  • By oldpainter · Posted April 12, 2014
  • In General discussion · 2 replies
  • I have had itchy/pin-prick-feeling lesions on my upper legs, torso, and arms for 6 weeks. My GP diagnosed it as "Guttate psoriasis." Would this have any connection to schleroderma? As I have had Raynaud's ...

Skin/Nerve Question

cricket1963
  • By cricket1963 · Posted April 12, 2014
  • In General discussion · 5 replies
  • Good Morning All!! I have a question and would like some feedback please. In the last week or so, I have been experiencing some weird sensations on my hips and upper thighs. It mostly happens when I am ...

calcific tendonitis

papas
  • By papas · Posted April 12, 2014
  • In Systemic scleroderma · 4 replies
  • Recently my doctor told me that I have calcific tendonitis in both shoulders. Anyone has any idea what is the next step to treat it , I feel pain it is bothering me a lot ...

Dizzy

1sassy1
  • By 1sassy1 · Posted April 11, 2014
  • In Systemic scleroderma · 28 replies
  • How many of you deal with dizziness. It's embarrassing when I'm at work and look like I'm stumbling around or having to hold on to wall/person etc. I don't have minnears or ear infection. I just feel ...

Buying Medications online Webinar

sweaters
  • By sweaters · Posted April 11, 2014
  • In General discussion · 1 reply
  • From the Scleroderma Foundation Newsletter: Buying Medications Online: How To Do it Safely and Affordably Tue, Apr 22, 2014 1:00 PM - 2:00 PM EDT In this webinar Dr. Marv Shepherd, Director, Center for ...

when should you start cytoxan?

janisb
  • By janisb · Posted April 11, 2014
  • In Treatment options · 8 replies
  • I've been diagnosed with systemic sclerosis with interstitial lung disease since 2011. All my PFT's have been the same for the past 3 years until the latest ones, so a new CT scan was done, and I am getting ...

Anyone have an infection in their toe because of a corn?

jorrtomotley
  • By jorrtomotley · Posted April 11, 2014
  • In Systemic scleroderma · 4 replies
  • Talk about pain! I cannot walk! I have had many infected fingers in the last 7 years, but the toe is much worse as I don't walk on my fingers! Moral....don't complain too loud, as here can be something ...

Breathing problems morphea

Debnurse13
  • By Debnurse13 · Posted April 11, 2014
  • In Localized scleroderma · 1 reply
  • My morphea is spreading around my ribs! Having trouble expanding ribs!! Anyone else have this problem?? What was done ...

Pulmonary Function improved since REVATIO

Kzoo
  • By Kzoo · Posted April 11, 2014
  • In General discussion · 21 replies
  • I just got back from my pulmonary function test at U of M..the tests showed that I have improved noticeably since I started REVATIO last year. I'm jazzed..I am very nervous about that one because I have ...

right side leg, knee and foot swelling

angelena
  • By angelena · Posted April 10, 2014
  • In Systemic scleroderma · 2 replies
  • Hello Everyone and Happy Spring!! I was wondering if anyone has experienced swelling in one side of the body, leg, and foot and not on the other. My knee is also swollen and feels thick when bending it ...

Super super static hair

JDL
  • By JDL · Posted April 10, 2014
  • In General discussion · 1 reply
  • I am new here but loving all the info. I am currently waiting for appointment with specialist while internist does a long list of tests, endoscopy, etc. One very strange symptom I have had for almost ...

Did your bloodwork always show it?

Peripheralme
  • By Peripheralme · Posted April 10, 2014
  • In General discussion · 8 replies
  • Three years ago I went to MAYO clinic since the neurologist said I had anxiety. At that time I was diagnosed with an immune response. My best friend just passed away at the young age of 40. I noticed ...

any helpful drug treatments for sjogren's?

deborahjean
  • By deborahjean · Posted April 10, 2014
  • In Treatment options · 11 replies
  • hello my fellow suffer's on the journey : ) i was diagnosed with scleroderma and sjogren's about 20 years ago. this past year, however, i've had a significant sjogren's flare. my whole head feels freeze-dried ...

early hand changes

beci
  • By beci · Posted April 10, 2014
  • In General discussion · 10 replies
  • Hi all Thought I'd introduce myself and hope you don'tmind me aasking a question or two... Firstly my name is beci I'm 33, married mum of 1 from the UK. 6 mths ago I started to feel very fatigued and ...

Help--claw hand!

possumpig
  • By possumpig · Posted April 10, 2014
  • In Systemic scleroderma · 14 replies
  • Hi, a new symptom presented itself last night and I am scared silly. I have CREST, or limited sys scl, and markers but no symptoms yet for RA. The CREST has not affected my skin except my hands are a ...

Fillers for Scleroderma mouth

tazzie1459
  • By tazzie1459 · Posted April 10, 2014
  • In Treatment options · 13 replies
  • Who has had fillers for their Scleroderma mouth? What type of fillers did you get/have ...

Recover from scleroderma

mayxanh
  • By mayxanh · Posted April 10, 2014
  • In General discussion · 20 replies
  • Just want to share with you some inspirng stories: A Place to Go – How Scleroderma Changed My Life by Maureen Taylor (ISBN-10: 0595405304; ISBN-13: 978-0595405305; iUniverse, Inc.; Paperback; 133 pages ...

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