Patient Comments: Vasculitis - Diagnosis

How was your vasculitis diagnosed?

Comment from: Neeru, 45-54 Female (Patient) Published: April 11

I am a 46-year-old female that has been diagnosed with vasculitis polyarteritis nodosa (PAN). My symptoms were lesions on my legs, Raynaud"s syndrome in my fingers and toes, fevers, muscle and joint pain, and fatigue. My doctor says the longer I am on treatment, the better my chances are for a long-term remission. I tried an internist, who suggested right away that it might be vasculitis. I am grateful for the quick diagnosis.

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Comment from: VCaruso, 35-44 Female (Patient) Published: February 12

I was misdiagnosed for weeks by my general doctor. I had itchy bumps that felt like my skin was on fire all over my feet, legs, arms and body. They thought I had an allergic reaction and told me to wash everything, stop using any new shampoo, soap, or lotions, and take antihistamines. A doctor who practices both western and eastern medicine took a look at my tongue and skin and said I had vasculitis. He said avoid MSG (monosodium glutamate) and that it was a kind of auto immune disease. He gave me some herbs to restore my immune balance and it went away in a week. I was so amazed I feel I had to share my story in case it could help someone.

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Comment from: Vicki, 25-34 Female (Patient) Published: October 31

I am 30. I had pain in my legs and a rash on my upper legs. A few days later, my legs, feet, arms, hands, palms were swollen and the rash spread to all of the above limbs. The soles of my feet started to itch like crazy, and my legs just a little bit. I ended up in hospital. Received Steroids and Cortisone. Had a skin biopsy done. They diagnosed me last Thursday with Urticarial Vasculitis. They don't know what causes it and they told me they probably never will. It is difficult to treat because of all the side effects of the medications. I take two antihistamine tablets in the morning and two at night. By end of December they are going to stop my meds and see if I have an outbreak again. The episode went on for a week before I got better. It is not nice...

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Comment from: nici07, 19-24 Female (Patient) Published: July 14

I'm a 22 year old female who always had clear skin. Two years ago I moved to DC and I started swelling really bad all of a sudden. Since I'm also anaphylactic I thought it was just from the takeout I eat all the time. Maybe they make the chicken and the shrimp in the same pan? I was on a heavy Benadryl regimen. It started with my fingertips n toes tingling and burning. Then my salivary glands were swollen for 3 weeks. Imagine feeling as if you were sucking on a lemon for 3 weeks straight. I was seeing my primary doctor, and allergist, and ENT, and a dermatologist at the same time and it took them all a whole year to finally diagnose me with vasculitis. After of course a Lupus scare (my grandmother has it). I'm in remission but I'm now cursed with the scars all over my face n body. People stare, people wonder, people speculate. But no one has any idea what I go through every day. No amount of scrubbing or creams will make this go away and now it's something I have to live with.

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Comment from: mal, 19-24 Female (Patient) Published: May 23

I was diagnosed with vasculitis summer 2013. It first appeared as tiny red dots on my legs. I thought it was a heat rash. I noticed if I stand too long, usually about five hours, I would break out bad and the dots would be more like splotches and they would itch and tingle. Stress also doesnt help or stimulants of any kind. Sometimes I get really achy in my legs and really tired. If I don't stand much for a couple days they disappear and my legs look normal. I'm on colchicine. This medicine has helped my breakouts be less horrible but doesnt prevent it so far. I've been on it for a year and it has made me sick with fever symptoms twice. I honestly hate this medicine. My primary doctor says it should go dormant in me after a couple years from my body making new proteins and I'm hoping that's the case. I'm trying to make my diet healthier to try and restore my pH balance, but it's hard when I love pop and pizza. My doctors have no idea why I have it. All my blood work and urine tests came out normal every time. They say I have hypersensitivity vasculitis but I don't know what's causing it. I did have a party phase after high school where I did a fair amount of MDMA and abused Vyvanse and Adderall to stay awake for college studying. I will never do that again and encourage anyone my age not to experiment in amphetamines. My doctors said that didn't cause it so I'm not sure. I wish the best for everyone else who battles this disease. It's hard for people to understand what I'm going through.

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Vasculitis - Describe Your Experience Question: Please describe your experience with vasculitis.
Vasculitis - Treatment Question: What kinds of treatment did you receive for your vasculitis?
Vasculitis - Symptoms Question: What symptoms did you experience with vasculitis?
Vasculitis - Causes Question: What were the causes of your case of vasculitis?

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