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RonaRoseanne
  • By RonaRoseanne · New reply March 24, 2014
  • Discussion in How my disease has changed my life · 2 replies
  • Occasionally we try something different for supper. Being fairly well controlled, I am willing to try just about anything to see what I can tolerate and what I can't. Sometimes the meal item is a premade ...

Periodic fever Illness-Infant

termardow
  • By termardow · New reply March 24, 2014
  • Discussion in Finding emotional support · 2 replies
  • My 13 month old son has had cyclical fevers, every 3 weeks, since 5-6 months of age. He spikes a fever out of nowhere, vomits and dehydrates. He has been hospitalized several times, with no help, as they ...

My Story with Stiff Person Syndrome

tams40
  • By tams40 · New reply March 24, 2014
  • Journal · 4 replies
  • It all began in 1997 when I woke up one morning with a crushing feeling in my right foot. We couldn't afford for me to go to the Dr because of the high deductible. My crushing feeling kept on going and ...

When i went to Riley's!!

MinionFreak2014
  • By MinionFreak2014 · New reply March 24, 2014
  • Journal · 2 replies
  • So i just got to thinkin while i was at Riley's i was walkin the halls and i started cryin alittle cuz i hurt but then i started cryin even worse when i heard someone elese in pain!!:/ = diz girl right ...

charley

MinionFreak2014
  • By MinionFreak2014 · New reply March 23, 2014
  • Journal · 20 replies
  • Charley is doing good since her surgery today. Took 5 hrs but the dr had to remove scar tissue and cut some of the channel down because it grew 6 inches to long. Then also he cut the pocket out so the ...

Need a Ehlers-Danlos Dr in Edmonton or Calgary

Jenlesh
  • By Jenlesh · New reply March 23, 2014
  • Discussion in Finding a doctor · 3 replies
  • Hello we need to find a dr who deals with ehlers danlos and pots for my 5 year old son and also for myself I am 38 . We are looking for one in the Edmonton Alberta Or Calgary Alberta (Canada ) . If you ...

Worsening joint muscle pain

tiny1966
  • By tiny1966 · New reply March 23, 2014
  • Discussion in How my disease has changed my life · 3 replies
  • Anyone experience a pronounced worsening of muscle joint pain? I don't know if I've run into a huge flare or other issues, possible eds. Dr appt on Tuesday. Over the last several weeks everything aches ...

Adventure_Girl and myself

gunner021
  • By gunner021 · New reply March 23, 2014
  • Journal · 34 replies
  • Hi to all, we have had a busy past year. Erin has been back in the hospital twice this past year once the Drs weren't sure if she was going to make it or not. Erin being Erin she pulled through ok. The ...

9 days after my IV treatment

BrooklynCat
  • By BrooklynCat · Posted March 23, 2014
  • Journal · 0 replies
  • On Thursday, 6 days after my IV treatment for SPS, I had my almost entirely pain free day in almost a year. Astonishing. I walked down the subway steps without my walking stick or holding onto the rail ...

Tarlov Cysts rare so ignored by doctors/radiologists

pmkno
  • By pmkno · New reply March 23, 2014
  • Journal · 21 replies
  • Delete I just found out recently that I have a Tarlov Cyst that has been causing me pain for over two years. Two MRI's and two different radiologists never mentioned the Tarlov Cyst on my reports so doctor ...

Mas Cell Disease yet another condition diagnosis linked? to Vascular Eds

Zeraphic-Ziggy
  • By Zeraphic-Ziggy · New reply March 22, 2014
  • Journal · 2 replies
  • Hello, Everyone.... Firstly, please except my sincerest apology for not being on lately, Last Sunday night I met with an accident & subsequently have broken my ankle. I am posting about Mast Cell Disease ...

Recently Diagnosed

angelernst
  • By angelernst · New reply March 22, 2014
  • Discussion in Getting a diagnosis · 2 replies
  • for over a month, both hands (fingers mostly) and wrists have been causing me some significant pain. Five days ago, my pain level went through the roof and my fingers started swell. I went to the doc ...

Forgiveness and Healing

chaplainstevens
  • By chaplainstevens · New reply March 21, 2014
  • Journal · 8 replies
  • One thing I have learned from working at a Psych Hospital is reading a patients charts (background history) explains a LOT, we ALL have baggage in our past and often that baggage dictates our emotional ...

medication

lwilson2665
  • By lwilson2665 · Posted March 21, 2014
  • Discussion in How my disease has changed my life · 0 replies
  • Hello again. Just met with my new pcp. She knows nothing about Systemic Mastocytosis, she even said I probably know more than she does. But she was willing to help me navigate the sea of doctors. She ...

New Doctor

lwilson2665
  • By lwilson2665 · New reply March 21, 2014
  • Discussion in Finding a doctor · 2 replies
  • Is there anyone who lives in or near southern California that can recommend a doctor who has knowledge of Mastocytosis? Any suggestions would be appreciated. Hope everyone has an awesome day ...

Muscle Pain and Burning on Exertion

kmdmzduet
  • By kmdmzduet · New reply March 21, 2014
  • Discussion in Getting a diagnosis · 5 replies
  • I've read articles about the public grappling with rising healthcare costs. I am both saddened that I am part of the problem, and not surprised at all that it is a problem - we are SO BAD AT THIS. Here's ...

living with chronic pain

fearney1971
  • By fearney1971 · New reply March 20, 2014
  • Journal · 2 replies
  • I am 42 years old and have been recently diagnosed with OPLL. My condition is very severe and am awaiting surgery. My neuro surgeon will be updating me on his surgical plan tomorrow morning. I also have ...

Mast Cell Activation Disorder - options for better management?

annak03
  • By annak03 · New reply March 20, 2014
  • Discussion in My disease has no treatment · 7 replies
  • Please help - No one seems to be able to advise me on this. And I cannot find any cases where people are using the management stratey I have chosen so I am unsure of whether there are dangers with this ...

mastocytosis

Rose1932
  • By Rose1932 · New reply March 20, 2014
  • Discussion in How my disease has changed my life · 2 replies
  • I was diagnosed with mastocytosis a few years ago and have been on hydroxyurea, zyrtec and pepcid. My main problem is severe itching. I had this severe type some years ago and it has been wonderful not ...

Having a bad day? Read this!!(:

MinionFreak2014
  • By MinionFreak2014 · New reply March 19, 2014
  • Journal · 12 replies
  • Well hello there i just wanted to say if ur havin a bad day and u feel like givin up or feel like ur ugly, worthless or wateva, stop thinkin tht! Cuz its not true becuz ur beautiful, unique and amazin ...
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