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General question on vasculitis
I got some wild rash that started on my face Initially it appeared as a large red bloom from the side of my nose up to mid eyebrow and soon after created tiny small red ulcer sores and spread all over. Those sores turned into brown spots. I thought that whatever it was, was going away except I kept getting an occasional new spot on my legs primarily. I had noticed a lacy rash on my legs and my knees turned purple like. Then started getting pupura lesions no bigger than a dime. And noticed my big toes had purple blue undertone. I finally went to my primary who is running a host of viral antibodies (though I have a primary immune deficiency and don’t always produce antibodies). She identified the pupura and said the toenail blushing was from impaired venous flow. Now I’m scheduled for an ultrasound to identify whether I have vasculitis. I have previously been diagnosed with that but about 20 years ago and it was related to heavy bruising. I also have a demyelinating motor nerve condition that a teaching hospital felt was related to a vasculitis too. But I don’t have any knowledge about it and from reading it sounds like it’s a autoimmune disorder which I’ve never had. Could others here give me the general low down about this disorder. Can it be acquired from a viral infection for instance? I d appreciate you feedback you could offer. Thanks
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@sb4ca oh my gosh! Vasculitis too! I was diagnosed with Polyarteritis Nodosa in 2016. That’s when my peripheral neuropathy started. I went to a neurologist who tested me and didn’t tell me anything about the CIDP…
My Vasculitis started with a medium sized, painful lump on the calf of my right leg. It looked like a red rash but it wasn’t itchy. My dermatologist took a punch biopsy and diagnosed me with Polyarteritis Nodosa. He sent the biopsy to doctors at two other labs for confirmation because PAN is so rare. That spot was the only one I had and as soon as I started taking prednisone it was gone. I have never had a reoccurrence.
My blood work has never shown any signs of inflammation. That’s not unusual with Vasculitis. In my humble opinion I think a punch biopsy is a better diagnostic tool for what you’re describing. They need to see deep under the layers.
You and I are book ends!
Blessings
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1 Reaction@sb4ca I forgot, I had the flu followed closely by bronchitis about 7 months before the Vasculitis appeared.
I blame it on that virus.
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1 ReactionThis is just too uncanny! Are you sure you don't also have a primary immune deficiency too, lol? I will say this, when this whole thing started happening at the end of June I felt sick as a dog. I thought for sure it was herpes because the red flame spot started weeping and then got a gold crust on it. It went into my eye on that side and I was diagnosed with herpes which is only one of the other times I've had it in my eyes (maybe it's always been something else?). Then I got tiny red sores which spread everywhere. Some looked like tiny blisters and seemed grouped by 3's. I got the ulcers in my mouth and back of throat. Two weeks later I had 8 gum line cavities with these black open holes. My mouth burns from just toothpaste. At the beginning I took an anti-viral, 3000 mg/day for over 10 days. Both my primary and neurologist brought up Behcet's disease though I don't fit with that either. (This is when my neurologist recommended going back to Mayo). It could be I got impetigo on the original spot because a spot on my chin also crusted. I took some ampicillin (almost full course I had on hand) and that went away. I have sores in my nostrils that I was afraid was MRSA as just months earlier an ENT cultured another sore in there that was MRSA. But it is now itching like mad so I'm using some fungal cream as the mypurcin wasn't doing anything. All this and way more is why I'm heading back to the immunologist that originally diagnosed me with common variable immune deficiency through the University of Irvine Medical Center. And on top of all that I'm getting bad neck pain again that I don't know if it's related to the surgery at the beginning or the year, a new pathology or related to the sudden appearance of significant scoliosis found last spring. Now that was shocking see a huge difference in the curve (or lack there of) of my waist line. It's just never ending over here. And I haven't even brought up some type of hepatitis they're trying to diagnose. I will turn 65 this year and this is by far the worse health period I've ever had. Just awful with immense fatigue. I even didn't go on my vacation with my sisters I feel so crappy. Please tell me you are faring better.
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3 Reactions@sb4ca I'm faring better than what I am hear from you. Holy smokes, you have your “wheels” spinning several times more than I do.
The immense fatigue you mentioned is so very relatable. I tell my doctors and family that I am profoundly tired. I am. Driving is out of the question in the afternoon because I am too tired. I make all the appointments I can for late morning so I can sleep late.
This morning my left foot developed foot drop. I bought a used walker this afternoon that is a bit bigger than I need, but it’s got all the bells and whistles.
I understand never ending…I have been sickly my entire life. Literally, from birth, to now approaching 74 years I have never been very healthy. By now my family is used to my litany of illnesses and complaints. Oh well.
When you mentioned hepatitis, I was reminded that that was one one the things the doctors asked me about when I was diagnosed with Polyarteritis Nodosa. They seem to agree that it is caused by a virus.
Keep us informed of your progress. I’m praying for your recovery!
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