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How my disease has changed my life
Share your story with other community members.
Systemic Mastocytosis
- By doglvr123 · New reply July 2, 2009
- 37 replies
- My husband has just been diagnosed with this and I know absolutely nothing about it. Can someone give me some insight? Thanks, Sonya ...
ollier's disease
- By ILOVEMYGRANDKIDS · New reply July 1, 2009
- 16 replies
- my dauthder has olliers disease,when she was born she was fine she looked fine she was a beautiful baby, she was born in 1977 . when it was time for her to star walking, she would sit down on the floor ...
Conn's Syndrome and Kidney pain
- By nikki_G · New reply July 1, 2009
- 13 replies
- I was wondering if anyone one else with Conn's syndrome gets extreme kidney and flank pain. I have regular bouts of extreme pain and spend quite a bit of time in hospital but the doctors here do not know ...
MGUS
- By Blkbeauty12 · Posted June 29, 2009
- 0 replies
- I'm more concious of what I eat and drink; I'm also more aware of what my son eat and drink! I feel like I'm always "waiting" for a final curtain call or something. I mean, I sit on pins and needles all ...
Severe Class 2 Malocullsion
- By akapoison · Posted June 29, 2009
- 0 replies
- Hello, my name is Evelyn Wildes. I was born with a Severe Class 2 Malocclusion. I suffer chronic pain, muscle spasms, migraines, clicking in both jaw joints, severe TMJ, and limited opening of the mouth ...
cerebral vasculitis
- By Margaret_Clark · New reply June 28, 2009
- 40 replies
- I live in the UK and was diagnosed with cerebral vasculitis 10 years ago after suffering from violent headaches, mini strokes and intense pain in my toes and fingers . I had a lumbar puncture and MRI ...
Diabetes Insipidus
- By MsLauren86 · New reply June 27, 2009
- 32 replies
- Sometimes referred to as "The Other Diabetes," Diabetes Insipidus (DI) is a rare endocrine condition characterized by excessive thirst and urine volume. DI can result in one of two forms: nephrogenic ...
Marine Bacteria Infection
- By kraemer40 · New reply June 27, 2009
- 5 replies
- Does anyone know about marine bacteria infections.. My husband 48 yrs old a fisherman by trade has started with this in Nov. 2008. We are at the point of surgery 3 times its on his hand and middle finger..A ...
cerebral vasculitis
- By chowmein2 · New reply June 26, 2009
- 27 replies
- Hi. Does anyone out there have cerebral vasculitis? My doctor won't refine the name (ie: CNS) because he feels the biopsy/angiagram is too risky health-wise. I am being treated with aspirin and Niacin ...
Angry as Hell !!!!!!
- By SickOfBeingSick · New reply June 24, 2009
- 22 replies
- I haven't been able to get appropriate medical care for almost 30 years and not for lack of concerted effort. I have multiple organ damage, brain damage, bone damage and CNS damage, most of which was ...
Cramp Fasciculation Syndrome
- By canadian_10165 · New reply June 22, 2009
- 5 replies
- i have Cramp Fasciculation Syndrome and i get jabbing in the chest and pain in both arms and legs.doctor's tryed alot of med but nothing seems to work .like to hear from anyone that has Cramp Fasciculation ...
Symptoms: Tarlov cyst(s)
- By oneilpcb · New reply June 17, 2009
- 23 replies
- I am a 56 year old very frustrated female. I am a mother of 3, including a son, who is a physician in residency who says Tarlov cysts are asymptomatic. When I read about other sufferers from Tarlov cysts ...
CMTC
- By kittycat71263 · New reply June 12, 2009
- 14 replies
- Hi My Son also has Cmtc.It is mainly on his left leg. But does have a small amount on other leg, scrotum one tiny place one back and on his eye lid! I am also trying to educate my self. My son was born ...
mastocytosis
- By methiffany · New reply June 8, 2009
- 11 replies
- My name is JulieAnn and I was Dx w/ mastocytosis about two years ago. Recently I have been experiencing major lower leg pain. It is only from the knees down and is a burning all consuming pain. Nothing ...
Life with ITP
- By Graceann2523 · Posted June 3, 2009
- 0 replies
- I was diagnosed with ITP shortly after the loss of my sister in 2007. I went through a battery of tests, stayed in the hospital for a week and was finally put on Prednisone. I wish I could erase all of ...
SAPHO syndrome
- By walterscsr · Posted June 3, 2009
- 0 replies
- My son was just diagnosed with SAPHO syndrome. I've got a lot of questions, and I would like to connect with others who have had a similar diagnosis. Thanks ...
Mitochondrial Myopathy Disease
- By mariebluebond · Posted June 3, 2009
- 0 replies
- If anyone has information on how to have more energy, please let me know. I take Levocarnitine 330mg-3tabs/day, CoQ 10 1000mg/day and many Vits. and minerals per day. I passed out at work and could not ...
NINDS Recognizes Central Pontine Myelinolysis
- By WhataBreeze · New reply May 30, 2009
- 6 replies
- NORD "Rare Diease Community," Members and Viewers Friday morning September 29th at the beginning of the 2006 NORD Conference in Bethesda, MD., I can remember hearing three important words the current ...
Step out side the Box
- By Jannie · New reply May 25, 2009
- 3 replies
- Hey it truly time to step out side the box and tell the medical field they need to be more aware. A person should not have to see 10-30 doctors before they find out whats wrong or even if anything. I ...
Kienbock's disease
- By jeepers · New reply May 24, 2009
- 2 replies
- I would like to know if anyone has this disease and has had to have surgery. I have a lot of questions about a partial wrist fusion. Can anyone give me any info on their problems post surgery ...
