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Somebody PLEASE HELP!!! ={
- By pwrsrg77 · New reply 10:54 am
- Journal · 85 replies
- Well, I'm now 2 years into a disease that is sucking the life out of me. If I had a nickel for every time I've balled my eyes out & said my famous quote "I can't take this anymore" I'd be a very rich ...
Masto symptoms.. hot skin but no fever?
- By katherine67 · New reply 9:09 am
- Discussion in Getting a diagnosis · 1 reply
- I'm working on getting a diagnosis for my 3yo daughter, Hannah. One of the things I think I'm noticing with her is that she feels very hot during a flare, but sometimes shows no fever (or it fluctuates ...
symptomatic tarlov cyst surgery
- By ap12 · New reply 8:56 am
- Journal · 20 replies
- Heard again from my neurosurgeon today. He reviewed my past MRI's with my current ones and concluded surgery sounds like the best option. My symptoms fit with S1 compression where my large tarlov cyst ...
Bowel Obstruction from J-tube?????
- By Rodeogrl02 · New reply 8:08 am
- Journal · 1 reply
- I had a colonoscopy and an endoscopy this past monday (the colon part because of having severe diarrhea for weeks), then before we started the procedure my dr asked if he could add on an endoscopy last ...
I have IGAn . . .
- By jbon317 · New reply 6:04 am
- Journal · 17 replies
- this is all so new to me ...
Looking for those with mastocytosis
- By HelenD · New reply 3:17 am
- Discussion in My disease has no treatment · 29 replies
- Comfort to all. I learned back in June that I have systemic mastocytosis. According the pathologist that performed my bone marrow biopsy I am the 27th confirmed case here New Mexico. Though I feel I have ...
a learning curve...
- By katherine67 · Posted 1:14 am
- Journal · 0 replies
- so, even though we don't yet have a diagnosis, I'm more and more sure of my belief that my daughter is suffering from Mastocytosis. Tonight we went to the urgent care center because of her coughing and ...
Mastocytosis
- By Fabulous005 · New reply 1:07 am
- Journal · 26 replies
- I have a question I'm going through some testing to see if I do indeed have any type of mastocytosis, but I started experiencing symptoms and those tan/brown spots a few years ago once I moved to this ...
indolent systemic mastocytosis
- By marcia3 · New reply 12:38 am
- Journal · 12 replies
- I would like to communicate with someone who has indolent systemic mastocytosis. I would like to find someone who understands what I am going through. Thanks ...
To: Pain From: Me
- By Nina372 · New reply 12:37 am
- Journal · 9 replies
- To: Pain From: Me Well hello pain, you might not want to hear this but you have out-stayed your welcome here in my body. You are the most annoying, agitating, distracting, way to needy, company that I ...
Isaac's syndrome
- By Lynn2 · New reply 12:18 am
- Discussion in Getting a diagnosis · 1107 replies
- Does anyone have Isaac's syndrome or have a relative or friend who does? Also, if you are just knowledgeable about this disease... Thanks, Lynn ...
Is this "normal"....mood swings
- By clkempf · New reply yesterday at 10:27 pm
- Journal · 12 replies
- Not the kind we had once a month but the kind that make you cry and then angry ??? I am finding out I am biting my husbands head off daily and that is not normal for me..... just diagnoised with Stage ...
School = feeling horrible. need advice
- By Nina372 · New reply yesterday at 9:56 pm
- Journal · 12 replies
- I go to the University of New Mexico it’s been about a month since I have started my classes and it is HARD I am taking 14 credit hours. I am always worried I will pass out on campus as I almost did ...
pots/dysautonomia
- By Nina372 · New reply yesterday at 8:59 pm
- Journal · 5 replies
- Does anyone here have experience or knowledge about getting a pace maker for their postural orthostatic tachycardia syndrome (pots ...
Trying to live with Trigeminal nerve pain after dental trauma procedure ,
- By BABYTBEAR · New reply yesterday at 7:50 pm
- Journal · 5 replies
- The more I read and study , the more I realize I am not alone ,,, I have spent 14 months looking ,begging ,praying , crying, reading and paying for help with no dental insurance or medical insurance ...
SO excited to share what I have found!
- By pwrsrg77 · New reply yesterday at 6:22 pm
- Journal · 15 replies
- I have received TONS of wonderful support from this amazing community of people just like myself. All that struggle with debilitating symptoms, wrong diagnosis, less than quality doctors etc... I wish ...
Lumbar pain
- By FrustratedInNJ · New reply yesterday at 5:11 pm
- Discussion in Finding a doctor · 3 replies
- Hi.... I'm a 46 year old female. My issue started in 2005. I started having back pain in the lumbar region. The first step was an x-ray which showed mild disc space narrowing at L-5 and S-1, consistent ...
Conn's syndrome (hyperaldosteronism)
- By jacque · New reply yesterday at 4:42 pm
- Discussion in Finding emotional support · 96 replies
- I would like to know someone else's story about their experience with Conn's syndrome. What were their symptoms before they were finally dignosed, and what is their treatment (medication or surgery ...
TRIGEMINAL NEUROPATY (NERVE DAMAGE)
- By Gary1970 · New reply yesterday at 3:01 pm
- Journal · 5 replies
- I am currently 39 years of age and until just after my 37th birthday I was free from any type of nerve pain. In March 2007, I caught a viral infection which essentially after a week attacked my right ...
Trigeminal Neuropathy
- By derwin · New reply yesterday at 2:50 pm
- Journal · 3 replies
- Hi Everybody. I just accidently deleted my journal entry and all your responses (Learning1 and Sophie Rose to be specific). So here it is again. I have Trigeminal Neuropathy from a severed nerve that ...
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The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration. The NORD Rare Disease Support Community is sponsored by the National Organization for Rare Disorders in partnership with Inspire.