Do I have it or not? This is the question.

[dskizs]

Been searching this site and found tons of help. One on line person led me to john Hopkins site and this was interesting. I hope I am being proactive and not reacting out of fear. Elevated ANCA score, with symptoms that could be vasculitis or old age! When do you stop searching for an answer? This is what j. Hopkins says:

Asthma (after 8 months of antibodics and 10 months of sinus problems the dr gave me asthma meds)

eosinophilia [>10% on differential WBC count] ( my German score was 1:8 what is that?)

mononeuropathy ( not sure what this is will look it up)

transient pulmonary infiltrates on chest X-rays (clear chest X-ray)

paranasal sinus abnormalities(yes, palups in the sinus)

biopsy containing a blood vessel with extravascular eosinophils.(mine was inconclusive)

When do I stop worrying and going to the dr for a yes or no?

One advise I am taking from this site is to have another biopsy done. I go in November.

Question 2 are ANCA scores related to any other disease?

Looking forward to all of your professional opinions.

[boozum]

Hi I'm like you not sure if I have this or general aches and pains, all my life I had sinus issues but I has a major nose bleed ( my house looed like a murder scene ) in May I ended in hospital over that weekend and now been refer to ENT the doctor told me I have a nasal septum perforation the hospital did not tell me that . I have had blood test done but no result and I am now currently having a major worst bout of a virus so my head feels like it been bashed sinus infection taking antibiotic and a deep dry cough so I'm in limbo . I have every sympathy with you cause I feel with my health it not brilliant but I don't want to seem to be a hypochondriac.

[dskizs in reply to boozum]

I know. This is a very serious sneaky disease. You have to be proactive. All I have read indicates early identification is best. Although I am scared I want to have some control and so I read , ask questions and confront my doctors and a partner and seek proper diagnosis. Many people have been helpful but as I am learning we need to approach our doctors with the right questions and ask for the answers together to determine what our bodies are trying to tell us. Ask for blood work eosinophils in the blood and ask for a score for ANCA positive or?

[Ayla Volunteer]

Re your question 2 - you might like to Google 'ANCA test' and select the wikipedia site result, then scroll down to Disease Associations, that will tell you which other diseases give a positive result and also the particular link with certain types of vasculitis.

I am no medic and the test results you have seem inconclusive but my first reaction, on reading them, was a possible link to a type of vasculitis, EGPA which used to be called Churg Strauss, this has symptoms of elevated C ANCA and asthma. Would ask how you are feeling generally? Can you ask your GP for a referral to a rheumatologist? Your GP's knowledge of vasculitis may be very limited.

I hope that you get some definite answers soon and good luck!

[dskizs in reply to Ayla]

Great advise. I live in Germany and found in homburg hospital a group that is into vasculitis. I am going to an internist Monday the 14 and taking all my results for the past year. If she is not responding as I believe she should've more test , and speaking my language, I will ask her to refer me to homburg. Cross fingers.

[Ayla Volunteer]

Well done! Let us know what happens and Good Luck!

Ayla

[LVVVV]

Have you been taking any supplements -- L-tryptophan, 5-HPT for example? Or others? If so check out Eosinophilia Myalgia Syndrome (nemsn.org). There are people even today getting EMS-like diseases, regardless of what the supplement manufacturers proclaim.

[Chuckette]

I suggest your dr considers that you might have Churg-Strauss Syndrome. I have been dealing with many of these symptoms but also polyneuropathy (tingling, burning "pins & needles" on feet and now hands) and unknown cause of digestive bleeding. Now have begun getting very painful vasculitis which may be the key to my diagnosis. Am searching for a support group as this is a very serious and rare condition.