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Vasculitis: Concerned. Was Tested, But


LindaJoy
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Hi, everyone. I was just to my family doctor today. She's a very

wise intern-est, luckily for me. She's referring me to Children's

Hospital in Cincinnati for my EE. Luckily again for me, their

eosinophilic disorders unit takes adults.

Anyway, while there, she and I got to talking about my experience

with trying to get my EE diagnosed, and she stated some confusions.

I wonder if any of you can help? I hope so.

I was tested for Churg -Strauss and vasculitis while in the hospital

here in Lima, and then in Cleveland. I have a lot of the symptoms of

these diseases, especially with my gastric problems. I had the ANCA blood

tests done, which showed negative for any form of vasculitis and

even some diseases, like lupus. I had a clear chest x-ray, a clear

MRI of my brain, normal seds rate, normal CRP, normal everything

blood but my eosinophils, which were 8.1, and IgE level, which was

1228. Docs are attributing those to my EE.

At CCF, the rheumatologists said I just don't appear like a

vasculitis patient. They said my rashes would last longer, like

days instead of hours, like I get them. And, I guess I would be a

lot sicker. I don't really know what they meant by my physical

presentation doesn't warrant vasculitis, but they said I definitely

don't have it.

Yet, when I have flare ups of my EE, my arms and legs hurt and may

even tingle and feel a little numb. I also experience purple feet

when they get cold and I dangle them on the floor over the side of a

bed. The tips of my hands may turn purple, too. Raynaud's doesn't

turn your whole foot blue, like mine does, is what I was told today.

I also have some other symptoms of vasculitis, like pain in my

muscles, blurred vision, weight loss (which I know can come from

EE), burning pains, etc.

What do you all think? I noticed that many of you have undergone

tests for vasculitis. Do you think my work up is good? I've had

numerous doctors tell me I don't have vasculitis (CSS or any kind),

based on presentation and tests, yet I still can't shake it. Am I

being obstinate?

Oh, I do have fibromyalgia along with my Postural Orthostatic Tachycardia

Syndrome, as well.

Thanks, everyone.

LInda

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Hi Linda,

Did your doctor test you for (excess) immune complexes in your blood? It can cause a lot of aching pain and is a type of vasculitis. I have it and it took the docs a long time to find it. What is EE?

Ann

Hi, everyone. I was just to my family doctor today. She's a very

wise intern-est, luckily for me. She's referring me to Children's

Hospital in Cincinnati for my EE. Luckily again for me, their

eosinophilic disorders unit takes adults.

Anyway, while there, she and I got to talking about my experience

with trying to get my EE diagnosed, and she stated some confusions.

I wonder if any of you can help? I hope so.

I was tested for Churg -Strauss and vasculitis while in the hospital

here in Lima, and then in Cleveland. I have a lot of the symptoms of

these diseases, especially with my gastric problems. I had the ANCA blood

tests done, which showed negative for any form of vasculitis and

even some diseases, like lupus. I had a clear chest x-ray, a clear

MRI of my brain, normal seds rate, normal CRP, normal everything

blood but my eosinophils, which were 8.1, and IgE level, which was

1228. Docs are attributing those to my EE.

At CCF, the rheumatologists said I just don't appear like a

vasculitis patient. They said my rashes would last longer, like

days instead of hours, like I get them. And, I guess I would be a

lot sicker. I don't really know what they meant by my physical

presentation doesn't warrant vasculitis, but they said I definitely

don't have it.

Yet, when I have flare ups of my EE, my arms and legs hurt and may

even tingle and feel a little numb. I also experience purple feet

when they get cold and I dangle them on the floor over the side of a

bed. The tips of my hands may turn purple, too. Raynaud's doesn't

turn your whole foot blue, like mine does, is what I was told today.

I also have some other symptoms of vasculitis, like pain in my

muscles, blurred vision, weight loss (which I know can come from

EE), burning pains, etc.

What do you all think? I noticed that many of you have undergone

tests for vasculitis. Do you think my work up is good? I've had

numerous doctors tell me I don't have vasculitis (CSS or any kind),

based on presentation and tests, yet I still can't shake it. Am I

being obstinate?

Oh, I do have fibromyalgia along with my Postural Orthostatic Tachycardia

Syndrome, as well.

Thanks, everyone.

LInda

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Hi, Ann,

Thanks for the reply. I'm not sure, though, if I was tested for excess immune complexes. I don't think so, or if I was, I wasn't told about it.

What symptoms do you have with this?

EE is eosinophilic esophagitis. I have a lot of eosinophils (white blood cells) in my esophagitis, which cause me to have some gastric problems, like diarrhea, and I have trouble swallowing, along with other stuff.

THanks, again.

Linda

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Hi Linda, I apparently have some type of vasculitis, although my primary care doctor did a blood test for it (I'm not sure exactly what test it was) and I came up negative. I was referred on to both a dermatologist and then a rheumatologist, as I had a rash on my inner thighs, which I later learned is called livedo reticularis. My rheumatologist says I exhibit signs of vasculitis and I know she keeps watch over it but I'm really not sure which of my tests led to that conclusion, or if it was simply enough to look at the livedo. I'm being treated for lyme and I believe that is what is causing the vasculitis in my case.

As for being "a lot sicker" I'm able to work full time, so that part sounds like bs to me!

good luck,

Pam

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Hi Linda,

Sorry it took so long to reply. I get a rash sometimes, but mostly just very painful aching in my legs and sometimes my arms. I guess a build up of immune complexes in the blood can cause the veins and capilaries to become clogged or swell and it causes heat, flushing, and pain. My tests for Lupus and those types of diseases are negative. Hope this helps.

Ann

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