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Active discussions
Masto symptoms.. hot skin but no fever?
- By katherine67 · New reply 2:27 pm
- In Getting a diagnosis · 3 replies
- 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 ...
Looking for those with mastocytosis
- By HelenD · New reply 2:22 pm
- In My disease has no treatment · 30 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 ...
Conn's syndrome (hyperaldosteronism)
- By jacque · New reply 12:34 pm
- In Finding emotional support · 97 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 ...
Isaac's syndrome
- By Lynn2 · New reply 12:18 am
- 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 ...
Lumbar pain
- By FrustratedInNJ · New reply yesterday at 5:11 pm
- 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 ...
Lupus Anticoagulant some help & an intro
- By utopianaurora · Posted yesterday at 2:41 pm
- In Finding emotional support · 0 replies
- *if you are looking for cost effective solutions scroll to the bottom* Hi, i am Amber. I am 23 years old, married and a college graduate in psychology. I am back in school for social work for my second ...
Stiff Person Syndrome and insurances
- By mikeysps · New reply yesterday at 12:08 pm
- In Medicare, medicaid and medical insurance · 2 replies
- I was diagnosed with Stiff Person Syndrome in 2001. Since becoming disabled, it seems like I have had to play doctor, researcher, insurance commissioner, political activist, etc., etc. So much for disability ...
Adrenalectomy
- By jetter · New reply yesterday at 11:26 am
- In Finding emotional support · 58 replies
- I am considering an adrenalectomy for Conn's Syndrome. I'd like to know of experiences having an adrenalectomy and of those some time after the surgery ...
having adrenalectomy tommorow
- By nikides · New reply yesterday at 10:18 am
- In Tips for caregivers · 1 reply
- Any heads up on what to expect after adrenalectomy ...
Mastocytosis and H1N1 vaccine
- By Cocoapuff68 · New reply yesterday at 8:43 am
- In Finding emotional support · 2 replies
- Well as is goes I went this morning with my husband to get the H1N1 vaccine. I got my shot at 10 am this morning and it is now 2:30 pm ...so far I am crossing my fingers for no reaction. I just want to ...
Tarlov Surgery Outcomes.
- By ColleenInCanada · New reply yesterday at 1:55 am
- In Getting a diagnosis · 12 replies
- I have just been diagnosed with a 1.5cm Tarlov cyst in my S1-2 region. It has been causing sciatic type pain for the past 3 yrs. I am waiting for an appointment with a neurosurgeon - which will likely ...
What is a Rare Disease?
- By foreverinbluejeans · New reply yesterday at 12:46 am
- In How my disease has changed my life · 18 replies
- In the United States of America, the Rare Disease Act of 2002 defines rare disease strictly according to prevalence, as "any disease or condition that affects less than 200,000 persons in the United States ...
Help dignose me
- By skittles · New reply November 5, 2009
- In Getting a diagnosis · 16 replies
- I have continued lactic acid burn in my muscles, even in my jaw when I talk. I have it everywhere. Just before I cry the burn is there. Typing this gives me burn in my arms and hands. I cannot feel when ...
What Do You DO To Help Cope With Your Dx.
- By jhewels · New reply November 5, 2009
- In Getting a diagnosis · 5 replies
- I fight each day to keep my life as normal as possible some days I may not try at all. I don't want to stop being included in things but I don't want them to expect be to do everything also. I don't want ...
Meds that help Cramp Fasciculation Syndrome
- By jupiterjane · New reply November 5, 2009
- In How my disease has changed my life · 25 replies
- I have been dealing with Cramp Fasciculation Syndrome for several years now. I have been on countless medications and have had IVIG treatments and nothing seems to be working. Please, if you have this ...
Differences Between Tests?
- By dianes123 · Posted November 5, 2009
- In Getting a diagnosis · 0 replies
- Can someone tell me the difference between a Pet-Scan and a Spect-Scan? Thanks for any info, Diane ...
3MCC child
- By CRowan · New reply November 5, 2009
- In Finding emotional support · 6 replies
- I am looking to connect with other 3MCC parents whose children have had a metabolic crisis. My daughter was hospitalized last winter ...
Meningioma -
- By jmp · New reply November 5, 2009
- In Finding a doctor · 2 replies
- My sister in Eastern Connecticut has been diagnosed with an meningioma and has been told by a local neurosurgeon that it needs to be removed soon. We are trying to find a neurosurgeon who specializes ...
Head to toe body twitching w/other symptoms
- By Lynn2 · New reply November 5, 2009
- In Getting a diagnosis · 27 replies
- I am putting this out here b/c I am at a crossroads. I need to find a doctor or a facility that is knowledgeable in this area. I have seen lots of docs with no diagnosis. Here are the basics: -Head to ...
My childs school is partially helpful
- By afields90 · New reply November 5, 2009
- In My child and school · 13 replies
- The principal and vice principal of my son's school have been somewhat helpful in my son's condition, he misses a lot of school, but they worked on getting something fixed out so I don't have to get a ...
