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I made it through another IVIG payment

wheelchair-23
  • By wheelchair-23 · Posted March 28, 2014
  • Discussion in Finding emotional support · 0 replies
  • I get depressed as even with the treatments I tire easily. I am fortunate to get 35 hrs. A week of help . I makes a big difference. It takes about 2 days to get the full effect of the meds . I have also ...

PPI's and Mast Cell Diseases

CookinMama
  • By CookinMama · New reply March 28, 2014
  • Discussion in My disease has no treatment · 3 replies
  • Hi all, I just wanted to make a comment on PPI use. They are only supposed to be used for 2 weeks to get severe GERD under control. They do not know what these do to people long-term. I just read an article ...

Great new Doctor

lwilson2665
  • By lwilson2665 · New reply March 27, 2014
  • Discussion in Finding a doctor · 7 replies
  • Good morning friends. I fee alive rejuvenated. I finally met my new doctor. His name is Dr. Chou. Boy has he given me a new perspective on doctors from So. Cal Kaiser. He is an oncologist. He spoke to ...

Tarlov Cysts & FMS & Cfs & Stroke

katyzing
  • By katyzing · New reply March 26, 2014
  • Discussion in How my disease has changed my life · 19 replies
  • Between Fibromyalgia, 9 years ago, chronic fatigue 8 yrs ago and now inoperable Tarlov Cysts, I'm at the end of my rope! But this site is great, it gives all other Cysters and bravesters..a chance to ...

Lambert-Eaton Need Help

CurtinB
  • By CurtinB · New reply March 26, 2014
  • Discussion in Finding emotional support · 2 replies
  • Hi there! I am reaching out for support/advice for Lambert Eaton. It has taken me 3 1/2 years to get where I am today. I was mis-diagnosed with MS a couple of years ago. I've had all sorts of test and ...

Test results, diagnosis with Dr Castells

mamalaurie
  • By mamalaurie · New reply March 26, 2014
  • Discussion in Getting a diagnosis · 43 replies
  • Hi Everyone! I saw dr Castells yesterday for my test results, treatment plan and definite diagnosis! Yes I do have systemic mast cell disease. My bone marrow was negative for mastocytosis as was the C ...

Singulair for mast cell disease

Jady58
  • By Jady58 · New reply March 26, 2014
  • Discussion in How my disease has changed my life · 3 replies
  • I take singulair 10mg at bedtime......today I was having a bad day, sneezy, runny nose and congestion (I never get sick) Knowing I had to go to the hospital today for surgery tomorrow I took a singulair ...

stiff person syndrome perm variant support group on facebook?

LaurylThomas
  • By LaurylThomas · Posted March 26, 2014
  • Journal · 0 replies
  • Hi guys, I was wondering if anyone has heard of this support group before? I somehow came across it while reading something. I am thinking of signing up, but wanted some input first as I have never been ...

Chemical Free Cleaning

Lookingforfriends
  • By Lookingforfriends · New reply March 26, 2014
  • Discussion in How my disease has changed my life · 1 reply
  • I just realized that I never shared with the group one of the best chemical free cleaning products I have found. This totally sounds like an infomercial!! I do not sell these cleaning products and have ...

New here....scared.

Queenbee1262
  • By Queenbee1262 · New reply March 26, 2014
  • Discussion in Getting a diagnosis · 16 replies
  • Hi, I'm Deb.....51 yr old Mom, wife and X-ray tech. Yes, I work full time....it is getting so very difficult. I have MS and RA. I got a tick bite last summer and have been so much worse since then, I ...

High Chromogranin Levels

tiny1966

not getting inspire emails info.

beingcelestial
  • By beingcelestial · New reply March 25, 2014
  • Journal · 4 replies
  • for anyone not getting posts...i had to copy and paste the inspire addresses (team inspire and subscriptions) in my contact list. i think yahoo did something that caused the posts and responses to bounce ...

pfapa and migraines, genetic tests. drug anaknra

julli
  • By julli · New reply March 25, 2014
  • Discussion in Financial issues · 1 reply
  • sn my son was presumed to have pfapa last year at thirteen. he was born with cyleft lipand palate so the removal of more parts are off the table. doesnt sond likeit it a fix anyhow it come s back. the ...

Whoo Indeed

tiny1966
  • By tiny1966 · New reply March 25, 2014
  • Journal · 5 replies
  • Have been entertaining myself making vintage posters with a new app. Keeps my mind occupied some ...

TRAPS with low grade fever?

LBBT
  • By LBBT · New reply March 25, 2014
  • Discussion in Getting a diagnosis · 1 reply
  • My 10 year old son has been having "episodes" from the age of 4 months. He is in and out of the hospital regularly ranging from once a month to 3 times a year. We have had a multitude of "diagnosis" until ...

broken record

lwilson2665
  • By lwilson2665 · New reply March 25, 2014
  • Discussion in How my disease has changed my life · 37 replies
  • Been having a hard time. Diagnosed with systemic mastocytosis in Jan. Moved to Los Angeles to be with my husband and my best friend. I've had numerous tests, hydascan, for my gallbladder, colonoscopy ...

PEG Tube External Fixation Bumper Adjustment???

Vkey66
  • By Vkey66 · New reply March 25, 2014
  • Discussion in Getting a diagnosis · 1 reply
  • I'm a 48 year old female, military veteran, who was diagnosed in 1994 with the mitochondrial myopathy' condition (KSS) Kearns Sayer Syndrome and CPEO. I've got a quick question for you all. I just recently ...

Mast cell disease pain meds

Jady58
  • By Jady58 · New reply March 24, 2014
  • Discussion in How my disease has changed my life · 10 replies
  • Hi All I need advice and I have learned this is the most reliable place to get it from those who live it! I am having surgery on Wednesday, they had me pick up a script for oxcodone. When the pain in ...

Trisomy 17q with translocation to 11p moasic

Joannaesm
  • By Joannaesm · Posted March 24, 2014
  • Discussion in Finding emotional support · 0 replies
  • I'm looking for sammysmama, who posted some time ago saying that she is looking for emotional support for a similar chromosome do-si-do. If you're there, I'm here! My daughter Jessica is 29 ...

Recipes for MCAS not for everyone!

Auntkat
  • By Auntkat · New reply March 24, 2014
  • Discussion in How my disease has changed my life · 8 replies
  • So I thought I might try starting a discussion on some of the recipes or things we can eat since we always talk about what we can't eat! I have found the fewer ingredients the better. Ok recipe 1. Kat ...
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