How my disease has changed my life
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drug induced parkinsons, any advise on this
- By 3littlepegs · New reply May 22, 2013
- 2 replies
- On top of all the other things i feel like a magnet at the min attracting everything. My new meds for my newly diagnosed Mastocytosis Urticaria pigmentosa that i was prescribed and only just started taking ...
DRENCHING, ALL OVER SWEATS
- By 3littlepegs · New reply May 21, 2013
- 17 replies
- WE HAD A LOVELY FAMILY BBQ TODAY AND THE SUN WAS SHINING ALL DAY. DOES ANYONE ELSE SUFFER COMPLETE BODY DRENCHING SWEATS TO THE POINT OF THEM RUNNING DOWN MY FACE, CHEST, ARMS, LEGS, WELL ALL OVER, MY ...
left Phrenic nerve removed
- By janemad · New reply May 21, 2013
- 4 replies
- hello everyone i just found this forum and i am hoping and praying someone can give me any info on the loss of my left Phrenic nerve . i had surgery to remove a tumour in my chest just over a month ago ...
Share your advocacy stories
- By sromesgene · Posted May 14, 2013
- 0 replies
- Genetic Alliance is partnering with Parent to Parent USA (P2P) and Family Voices (FV) to collect resources that will support individuals who wish to act as advocates on behalf of themselves, their families ...
Da Mask
- By ThunderOKC · New reply May 12, 2013
- 2 replies
- Well, I don't know what to pick from the Topic dropdown list since it doesn't have the Other option. I come here, because a lady named Laura posted on Yahoo Answers regarding Craniodiaphyseal Dysplasia ...
Mastocytosis - what can I expect?
- By Cape · New reply May 11, 2013
- 4 replies
- Hello, I'm in the early stages of being diagnosed with some form of mast cell disorder. After 3 unexplained anaphylactic reactions in the middle of the night, I visited my allergist who ran some basic ...
SPS and IVig
- By AmyK2011 · New reply May 9, 2013
- 16 replies
- Dear SPS'ers who've had IVig, I am nearly finishing a regimen of a 14-IV treatment of IVig (25mg/10%). My results have not been miraculous by any means, but if I pay close attention I think I can feel ...
Mast Cell Anaphylaxis and Epipen
- By ziggy567 · New reply May 8, 2013
- 24 replies
- Good morning, It has been a while since I have started a discussion, but, I have been reading and commenting some on the mast cell/mastocytosis threads. I was diagnosed last year with mast cell activation ...
FAP SUPPORT
- By dave1969 · New reply May 3, 2013
- 13 replies
- I have FAP familial adenomatous polyposis. I was diagnosed with it in 1997. Since then my life has taken many different roads, most leading to more surgeries. I have looked and looked for support groups ...
Doseage of Zyrtec for Mastocytosis
- By Collins767 · New reply April 23, 2013
- 5 replies
- Hi all! I was wondering what the typical dose of Zyrtec is for Masto patients ...
TMEP
- By Alisha21 · New reply April 21, 2013
- 5 replies
- I was diagnosed with TMEP January 4 2013 after having a skin biopsy on brown spots I have all over my body (mostly on my legs). My doctor didn't have much info for me and I didn't really understand what ...
Physical activity and mastocytosis question
- By Collins767 · New reply April 11, 2013
- 15 replies
- Hi all, Not full diagnosed yet but pretty sure I have it. I'm waiting for the results of my BMB. Question...... I was outside this morning and cutting some overgrown bushes. I would say I was doing it ...
Does Conn's syndrome progress
- By hypokalemicgirl · New reply April 4, 2013
- 24 replies
- Does anyone know if Conn's syndrome gets progressively worse. I'm on 50 mg of Spironolactone. Before this seemed to be enough to lower my blood pressure to normal levels, but recently my readings have ...
Mastocytosis and Spheracytosis
- By Collins767 · New reply April 2, 2013
- 3 replies
- Hello All! Recently diognosed with Mastocytosis....which sucks by the way, and was wondering if anyone has it and spherocytosis. I met with Dr. Castells of Boston last week and she said I was the only ...
PAIN
- By spiritscript · New reply March 26, 2013
- 7 replies
- I can barely do anything anymore due to this pain. I'm so very depressed. PLEASE pray for me. I have an appt. with my PM doctor tomorrow. I will be out of meds a week early because they gave me the wrong ...
Mast Cell Triggers??
- By ziggy567 · New reply March 24, 2013
- 19 replies
- For those of you with mastocytosis and mast cell activation disorder, what are your triggers? Do most masto and MCAD sufferers have similar triggers? It would be helpful to know what type of stuff to ...
Hello, I have HIDS
- By akulacki · Posted March 20, 2013
- 0 replies
- Having HIDS has been a mixed blessings in my life. It has kept me out of trouble in my youth. I never tried any kind drugs due to illness and also kept me grateful for everything in my life. I am now ...
Genetic Alliance Weekly Tip - A Palette of Possibilities
- By GA_Alyson · Posted March 19, 2013
- 0 replies
- Hello all, Over the last two years, Genetic Alliance staff has been sharing a weekly 'tip' - information about a relevant conference, a new resource, a novel way to connect with others - with the leaders ...
Mastocytosis
- By nalah · New reply March 15, 2013
- 24 replies
- I was diagnosed with mastocytosis 1984. My disease has been under control until the past year. I had an anaphylactic episode 3/2/13. The episodes are getting more severe and more frequent. The chromolyn ...
Hole in vertebrae
- By Jjdaughters · New reply March 12, 2013
- 6 replies
- Has anyone been diagnosed with a hole in vertabrae due to tuberous sclerosis? My doctor, who is one of the best diagnosed me with this. Just wondering, and if so, does it weaken your spine? Thanks for ...
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