Patient Comments: Vasculitis - Diagnosis

How was your vasculitis diagnosed?

Comment from: searching, 55-64 Male (Caregiver) Published: December 01

After many blood tests, muscle studies and many doctor visits, he finally had a muscle biopsy done to his calf muscle and it was determined he has vasculitis.

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Comment from: DONeal, 55-64 Female (Patient) Published: April 21

I was diagnosed by a vascular surgeon who knew that the vein bursts, of which I've had many, are caused by vasculitis. It started in right hand, with pain and numbness of fingers, and spasms that woke me up while I was trying to sleep. The lack of sleep made my lupus worse and I felt myself going a little crazy. Having a diagnosis helps but this is my 4th month and I'm wearing out. The pain and fatigue are awful.

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Comment from: River girl, 65-74 Female (Patient) Published: July 08

I was diagnosed with vasculitis after an ANCA blood test. I don't have any of the symptoms which they asked me, so I'm really questioning whether I have the disease or not. I've been reading about this for over an hour and see nothing else that points to vasculitis. They want to start me on prednisone and methotrexate. I'm really scared. No biopsy was done.

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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: Kim, 45-54 Female (Patient) Published: August 20

I have had a variety of symptoms for years and no doctor could figure out what was wrong with me. Partly because they never appeared all at the same time. Two years ago I had my large intestine taken out because it would not work well enough to eliminate properly. Now I am wondering if I needed the surgery. I have had joint and tissue pain, extreme fatigue which I was always told it was from be anemia. I have finally been diagnosed with the vasculitis and am now on the cancer drug, steroids and folic acid. At the present time I am having joint pain, fatigue and my inflammation levels are still between 9 and 12, with my doctor wanting them to be much lower.

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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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Patient Comments

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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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