P-ANCA MPO positive since 2008.

[cruznlcsw]

Now the rheumy says I don't have vasculitis. One other test is positive now, and it is for the disease that the actor died from. I don't understand. I also have Sjogren's also auto immune. I guess I won't be getting any

help

[RareLily]

Why is your rheumatologist coming to this conclusion? Were MRI or CT scans ordered? Were these results negative or inconclusive?

[cedric]

there is help ask your dr and he will put u on treatment and don't worry

[AndrewT]

If you get on with your doctors/GP/consultants generally ask for further tests. If not shout a lot but at the right people! Good luck and please do let us know, will you?

Good luck Andrew T

[pinktiger53]

Is it possible he's meaning you don't have particular type/types of vasculitis. Or that you are in remission?

[cruznlcsw]

I have no idea why he is coming to this conclusion, but it does not look like I will be getting any help. I don't know what is going on. He was really nice when I met him, and told me he needed to know if the vasculitis was in my brain. Then gave me a list of meds to look up to see which one I wanted to take. My third visit he didn't even look at me. He said he would contact my neurologist who thought the vasculitis was in my brain, but then he didn't contact him. I have, quite frankly, given up, and told him as much. I know something is affecting my brain. I just don't know what it is. I am having difficulty breathing. Don't know why. My heart is having arrhythmia's, but at least I have a doctor outside the clinic I am going to, and he said he would help me with this. I guess I will just live my life for as long as I can. I don't really know what else to do, I am see the neurologist this Wednesday. Maybe he will have some ideas. I am so exhausted from all of this. Thanks for all of your support. I have really appreciated it. Blessings, from California

[LVVVV]

If you have autoimmune conditions could the vasculitis be a result of that? I have a rare autoimmune disease called Eosinophilia Myalgia Syndrome (from taking the food supplement L-tryptophan) and have had skin vasculitis come and go over the years. Have also had a couple years of trouble breathing but that went away thanks to treatments by an osteopathic physician. Many, many other symptoms that I have to work on to keep under control. I'm in New Jersey, USA.

[Ezrela]

I was also told I no longer have this disease and the tests the GP did didnt show up anything, I still as always have bad energy problems have headaches, swollen legs and itchy legs, I am still prone to picking up every bug going, yes I still have the symptoms but they have gone unrecognised, I also have breathing issues, Im on a ventilator for sleep apnea but Im having a struggle with my lungs, I still blame it all on vasculitus, and to be honest money talks if you have it you can get it proved but the NHS do not care, insist insist and insist again until someone hears you

[cruznlcsw in reply to Ezrela]

Thanks for your support!