Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Note For Janey


  • Please log in to reply
3 replies to this topic

#1 nan

nan

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 16 December 2006 - 11:29 AM

Janey,
Thanks for the information. Last Friday my blood pressure was 85 over? He couldn't find bottom number. It's usually about 60. I probably couldn't take medicine you took because I have a big problem with GERD. I am currently on three meds for that. Oh Well!
Thanks,
Nan

#2 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 16 December 2006 - 06:24 PM

Nan,
Three medications for GERD! Yes, you do have it really bad. So sorry to hear that. :( Do you take natural precautions with diet and an eating routine to help decrease it as well?
Forgive me if I've already given you this link for Raynaud's treatments. Maybe you can get some ideas that don't require another medication that can help you. A lot of this stuff is just trial and error.
Big Hugs to you Darling,
Janey

#3 nan

nan

    Gold Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPip
  • 649 posts

Posted 17 December 2006 - 07:40 AM

Janey,
Thanks for giving me the link to Raynaud's. I will take a look. As far as GERD, right now I am eating 6 small meals a day. I try to watch what I eat. But at this point I feel lucky if I can get it down with no pain. I had an esophageal yeast infection last winter and it was so painful to eat that I lost 18 pounds. I am 5'81/2 inches and weigh 118. I feel so bloated and it hurts so much to swallow some times. I had a really bad spell last weekend . I go to see my GI on Friday. He essentially told me last time that if I have Scleroderma this is what I will have to deal with. The GERD got worse once I was diagnosed with watermelon stomach. I think the spontaneous bleeding is what makes me feel nauseous all the time. I can't wait to get to Johns Hopkins and maybe they can figure some things out.
Thanks again,
Nan

#4 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 17 December 2006 - 05:15 PM

Nan,
Please don't let your GI doctor blow off your symptoms as "something you'll just have to learn how to deal with." If you can't get treated, then switch doctors. I had about 8 months of esophageal problems, small mouth, inability to swallow, pain when food went down the pipe, etc. I couldn't eat enough to get the vitamins I needed and within those 8 months, I lost 60 pounds. Those problems did go away once I was started on immunosuppressants and unfortunately, I've gained 30 pounds back. No problems swallowing here! So I guess the point is that most sympstoms can be eased to something that you can live with, so keep up the fight and don't let this doctor blow you off.

Please let us know how Firday's appointment goes. I'll be thinking of you.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)