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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 ...
Masto symptoms.. hot skin but no fever?
- By katherine67 · Posted 12:29 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 ...
Bowel Obstruction from J-tube?????
- By Rodeogrl02 · Posted yesterday at 9:30 pm
- 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 ...
Lupus Anticoagulant some help & an intro
- By utopianaurora · Posted yesterday at 2:41 pm
- Discussion 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 ...
Lumbar pain
- By FrustratedInNJ · Posted November 5, 2009
- 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 ...
Differences Between Tests?
- By dianes123 · Posted November 5, 2009
- Discussion 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 ...
Stiff Person Syndrome and insurances
- By mikeysps · Posted November 4, 2009
- Discussion 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 ...
My Story
- By chillray · Posted November 4, 2009
- Journal · 0 replies
- DX with POTS 3 years ago. Trying to find underlying cause. POTS doctors are thinking maybe MCAD, based on improvement of symptoms with ant-histamine use. No official tests done yet. Can't find doctor ...
SO excited to share what I have found!
- By pwrsrg77 · Posted November 4, 2009
- 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 ...
A "wake up" call to my soul
- By tmichaelroche · Posted November 4, 2009
- Discussion in How my disease has changed my life · 0 replies
- I really appreciate everyone's comments, suggestions and inspiration. This is a great web site. I am severely depressed. My Psychologist (have been with him since 1994) was informed of my suicidal thoughts ...
Mastocytosis and H1N1 vaccine
- By Cocoapuff68 · Posted November 4, 2009
- Discussion 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 ...
I'm losing my hair!
- By faithinthenight · Posted November 3, 2009
- Discussion in How my disease has changed my life · 0 replies
- Has anyone experienced losing their hair from Prednisone? I have experienced about a 40% hair loss recently. The amount that comes out daily continues to surprise and alarm me. Been on and off Prednisone ...
Adrenalectomy, Hospital Meds
- By GingerPeaches · Posted November 3, 2009
- Discussion in Getting a diagnosis · 1 reply
- When in the hospital for an adrenalectomy, who is the overall person who coordinates and accesses your medication? Should you bring all the medication you are presently taking to the hospital? During ...
ICD, LQT, low potassium
- By edmar · Posted November 3, 2009
- Journal · 0 replies
- I'm a SCA survivor, and i'm lucky to be alive again. I fainted, April 23, 2009, the reason i was rushed to the hospital. I was admitted for 12 days, and after a series of tests and investigation, my doctor ...
recently diagnosed - looking for advice/help/support
- By louanne · Posted November 3, 2009
- Discussion in Finding emotional support · 2 replies
- Hi, I'm recently diagosed with cerebral vasculitis after suffering a couple of TIA's and other neurological issues. Initially started on steriods and immuno suppressants which seemed to work for a couple ...
To: Pain From: Me
- By Nina372 · Posted November 2, 2009
- 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 ...
pots/dysautonomia
- By Nina372 · Posted November 2, 2009
- Journal · 5 replies
- Does anyone here have experience or knowledge about getting a pace maker for their postural orthostatic tachycardia syndrome (pots ...
Spect Scans and unexpected Kidney
- By dianes123 · Posted November 2, 2009
- Discussion in Getting a diagnosis · 1 reply
- Hello all, I was wondering if any body could help me with a question I have regarding a spect scan I had back in Sept. of 2008. Now this spect scan was to be for my back, legs, and neck and came out to ...
parvovirus B19 positive--what does this mean?
- By stephanie71 · Posted November 2, 2009
- Journal · 2 replies
- Hello, my name is Stephanie. I was just told by my rheumatologist that I'm positive for parvovirus B19. He said that my exposure was not recent. What exactly does this mean? He said my level was 0.56 ...
Does hydrocephalus cause headaches or what?
- By gigglebox · Posted November 1, 2009
- Discussion in Getting a diagnosis · 3 replies
- So I have been having headaches for almost a year now and am getting nowhere with the docs. have had a ct and an mri. Both showed 20mm arachnoid cyst in postetior fossa and a sebaceous syst and hydrocephalus ...
