Anyone Know Anyone With Or Know About Churg Strauss?

[LindaJoy]

Is anyone here familiar with churg strauss, or know anyone who has it that I may contact? I've been told by many docs that I don't have it, but I'm afraid I do. I've tested negative for all the tests, but I'm just not getting any better on all the meds I'm on.

Thanks.

Linda

[lthomas521]

Here's a discussion of Churg-Strauss syndrome:

http://vasculitis.med.jhu.edu/typesof/churgstrauss.html

Why do you think you have it? Do you have asthma and vasculitis?

"The American College of Rheumatology (ACR) has established criteria that must be fulfilled in order to classify a patient as having CSS. These criteria were intended to distinguish CSS from other forms of vasculitis (for the purposes of research studies). Not all patients meet every criterion. Some, in fact, may have only 2 or 3 criteria, yet their physicians are still comfortable classifying their disease as CSS. The ACR selected 6 disease features (criteria) as being those that best distinguished CSS from other vasculitides. In order to be classified as a CSS patient in a research study, therefore, a patient should have at least 4 of the 6 ACR criteria.

"These criteria include: 1) asthma; 2) eosinophilia [>10% on differential WBC count]; 3) mononeuropathy; 4) transient pulmonary infiltrates on chest X-rays; 5) paranasal sinus abnormalities; and 6) biopsy containing a blood vessel with extravascular eosinophils."

[LindaJoy]

Thanks for the reply. I've been to the site you listed. Thank you.

I think I have it because I have a lot of the symptoms listed with the Churg Strauss association, yet I don't quite fit in many ways. (My main two symptoms are gastric problems and a high eosinophil level. They found eosinophilic esophagitis during a biopsy of my esophagus.)

For instance, my blood eosinophils, at their highest, have been 8.1, not the 10% needed for churg strauss. Plus, they go up and down all the time. I'm not sure, with churg strauss, if they stay constant or go up and down, too.

I haven't had a biopsy of an artery, but I've had the ANCA blood tests done--negative. My sed rates are normal, a brain MRI was normal, my CRP is normal and I haven't had bad asthma since I was 5, and I'm now 41, yet I do still have allergies and stuffy nose.

My docs said I don't present as a vasculitis person, either, but since I have Eosinophilic Esophagitis, and I'm so sick with that, I'm worried. I have a lot of muscle pain, and I guess that can come with churg-strauss, my raynaud's is terrible right now, in my hands and feet (both cold and turning blue all the time).

Some of them who said I don't have vasculitis were from the Cleveland Clinic.

I'm just scared they're missing something, since I"m not getting better very quickly. Suggestions?

Linda

Oh, my chest x-ray was normal, too.

Thanks for the reply. I've been to the site you listed. Thank you.

I think I have it because I have a lot of the symptoms listed with the Churg Strauss association, yet I don't quite fit in many ways. (My main two symptoms are gastric problems and a high eosinophil level. They found eosinophilic esophagitis during a biopsy of my esophagus.)

For instance, my blood eosinophils, at their highest, have been 8.1, not the 10% needed for churg strauss. Plus, they go up and down all the time. I'm not sure, with churg strauss, if they stay constant or go up and down, too.

I haven't had a biopsy of an artery, but I've had the ANCA blood tests done--negative. My sed rates are normal, a brain MRI was normal, my CRP is normal and I haven't had bad asthma since I was 5, and I'm now 41, yet I do still have allergies and stuffy nose.

My docs said I don't present as a vasculitis person, either, but since I have Eosinophilic Esophagitis, and I'm so sick with that, I'm worried. I have a lot of muscle pain, and I guess that can come with churg-strauss, my raynaud's is terrible right now, in my hands and feet (both cold and turning blue all the time).

Some of them who said I don't have vasculitis were from the Cleveland Clinic.

I'm just scared they're missing something, since I"m not getting better very quickly. Suggestions?

Linda

[lthomas521]

Churg-Strauss is basically a combination of severe asthma and vasculitis (inflammation of the blood vessels). So if you don't have those two things, you don't have Churg-Strauss.

If your two main problems are gastric problems and a high eosinophil count, then the diagnosis of eosinophilic esophagitis sounds reasonable. Not everyone who has eosinophilic gastroenteritis has Churg-Strauss.

http://allergies.about.com/cs/other/a/aa062702a.htm

If you have allergies, they could make your POTS worse. Have you tried an elimination diet to rule out food allergies? Is the problem seasonal? Are you seeing an allergist? Have you been tested for celiac disease? Lots of people with POTS-type problems have it, especially if they also have gastrointestinal problems.

http://www.celiac.org/

Are you sure that you have Raynaud's? Are your hands and feet always cold and blue? Or do they alternate between being blue, white, and red? If they are only cold and blue, and if they are that way all the time, not just episodically, then maybe the problem is not Raynaud's but just plain old low blood volume, which is common with POTS. Raynaud's is due to spasms in the arterioles (itty bitty arteries that lead to capillaries).

http://www.emedicine.com/med/topic1993.htm