Patient Comments: Vasculitis - Describe Your Experience

Please describe your experience with vasculitis.

Comment from: alice55, 0-2 Male Published: February 19

A two year old boy developed a severe rash to his lower legs and feet, although he was hospitalized no diagnosis or treatment was provided to his mother. During the next 2 weeks he became lethargic and constantly ran a fever with occasional vomiting and had a brown foul smelling discharge from his right ear. He fell against an open oven door and burnt his right hand. He had no response to this injury and was again hospitalized for a lumbar puncture and a ct scan, both showed normal results. At this time he also had severe conjunctivitis in both eyes and did receive cortisone eye drops with a marked improvement. Sadly 2 weeks later he was found unresponsive and was successfully resuscitated and transferred to hospital. CT scan showed a brain hemorrhage with no trauma. The hospital then made a decision to accuse his mother of child abuse and held him in the ER for 3 HRS while CPS and police photographed and altered a small abrasion on his abdomen to resemble a burn to support their allegation.

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Comment from: sandi, 45-54 Female (Patient) Published: February 19

Several years ago, I was rushed to the hospital with the most intense head pain I had ever experienced (and I had been living with Cl.10 migraines for yrs). After administering all different forms of pain meds., and taking an MRI, they did a spinal and realized I was hemorrhaging. They finally decided to perform and Angiogram. While doing the procedure, the neuro-radiologist severed the artery in my neck accidentally and from that they discovered that all of the vessels in my head had "shut down," causing the blood to only "bead" rather than flow. They started me on a regimen of high doses of prednisone, etc. and, after several more angiograms and many months, all of the vessels had opened except one or two. At one point, my doctor told me that my chances of living beyond a year were between 2% and 5%. This was many years ago (about 15, I think). They never came up with a name for my particular form of vasculitis but it was studied. I still worry that it will happen again as suddenly and severe as it did then. My ANA count remains off the charts. Lately I have experienced multiple UTI's and painful swelling of the ankles, with bruising. Although I'm very grateful to have lived through this and come out as active and healthy as I am today, I never want to go through it again.

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Comment from: Windy, 55-64 Female (Patient) Published: February 19

I was diagnosed with Rheumatosis Arthritis about 10 years ago. I have been in remission for about 8 years. Recently, I had muscle pain in my left leg. It was much worse at night when I was resting and I would wake with the pain. This went on for several weeks. I went to doctor but they could not find anything. At the same time I had 4 what I thought were bladder infections, (one every 2 weeks), but although I had blood in my urine, I had no infection. (The bladder infections were treated with antibiotics.) The pain in my leg became nauseating and then I noticed a rash. I thought maybe it was shingles. I went to the ER, but doctor said no. I then went to see my own doctor who diagnosed PAN. The marks on my lower leg were a red rash with two dark red, larger spots on the front and one large dark red on the back of my leg. I am now on Prednisone and although the rash has cleared, I still have pain - like a bruised shin without the bruise although the muscle pain has ceased.

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Comment from: chapelin2000, 0-2 Female (Caregiver) Published: October 13

I have a 2 year old diagnosed with Vasculitis. On Sunday she woke up with a back pain on one side and it was kind of swollen so I ran to the ER. The DR. notice some tiny red spots from her knees down not her feet so I did not pay too much attention to the spots because she had fever the night before from a cold that she still has so I thought it was a reaction from that fever. We ended in the hospital for three days. The doctors could not find a diagnosis at that moment because she also had a few mosquito bites from playing in the park. For the doctors the most concern was the back pain so it resulted that she had UTI. When she was discharge the following day she had more red spots on her thighs an buttocks so on Wednesday I took to her pediatrician and suddenly she could not walk she was limping from one leg some x-ray was done and thank God the results were negative, but the pain was there she was prescribe Motrin for the pain. We have not experience the swelling on the ankles or other symptoms related to this condition, again it has only been a week. She also lost her appetite.

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Comment from: Mother J, 45-54 Female (Patient) Published: October 08

I was diagnosed with vasculitis, "scattered activation foci," and "significant temporal lobe asymmetry" of the brain after being bitten by hundreds of ticks in Oklahoma. Turned out, I had Lyme disease, Human Granulocytic Ehrlichiosis and Rocky Mountain Spotted Fever - yes, all at the same time. That was in 1994 and I'm still sick from time to time and my brain is still a mess. Early diagnosis and proper antibiotic treatment would have saved me all of this misery the past 19 years.

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Vasculitis - Diagnosis Question: How was your vasculitis diagnosed?
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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