Longest Two Weeks...

[poppetkazutaka]

Went to the sinus doctor on Friday. When I saw the nurse I unloaded, because I was severely stressed and couldn't take it anymore. Did the same thing on Doctor Salmon and when I got to "and I just hurt all over and I can't take it anymore" he said: "...you hurt all over?"

"Uh...yeah?" At this point I was about in tears so the fact that he made that seem significant made me stop. "For about six years now and everyone else tells me its nothing. But I really think it's all related and I need some blood test thingie."

"We're going to do an ANCA test. There's this disease process-"

"O_O"

"...that the body goes through and..." at this point he mumbles and runs his words together because he knows I'm a nut that looks things up and he doesn't want me to get scared and run to the internet but I did happen to get a few words such as vasculitis.

So I looked that up.

And holy crap. IT FITS. But I'm not going to get my hopes up. But everything hinges on this blood test.

However, it takes TWO WEEKS to get it back. The scar tissue. The pain. The neurologic symptoms. The multiple system issues. The sudden worsening after my chronic sinus infection finally cleared. But...it's very frightening. VERY frightening. Because the extent of the pain I feel and the symptoms might mean it's gotten that bad. I've already lost a sinus and a gallbladder, and I'm starting to have some kidney function problems and other gastro issues.

So...I'm going to get to see a rhuematogist, and a lot hinges on getting a positive on this ANCA test. Will this be the end to a six year long struggle of me screaming that there's something else wrong? That they haven't found it yet? That I'm not crazy and scar tissue masses aren't normal like they say?

[prays to God the test comes back positive and fast]

[futurehope]

It's never easy to wait on a diagnosis. Maybe you will finally be able to get some answers and help with your problems. Please keep us posted. BTW, how does POTS fit in with vasculitis?

[poppetkazutaka]

BTW, how does POTS fit in with vasculitis?

If you follow the wiki-spiral...

Vasculitis can cause neurological symptoms such as mononeuritis multiplex, headache (I suffer from debilitating migraines without medicine), stroke, tinnitus, reduced visual acuity, acute visual loss.

Mononeuritis multiplex is peripheral neuropathy, which is the term for damage to nerves of the peripheral nervous system, and may be caused either by diseases of the nerve or from the side-effects of systemic illness.

http://en.wikipedia.org/wiki/Mononeuritis_...ns_and_symptoms

There is also pain in the muscles (myalgia), cramps, etc., and there may also be autonomic dysfunction.

So technically, the diagnosis of 'bordeline autonomic dysfunction' would have been a sideline to the real problem, if I have some form of vasculitis and that's what caused it. I often have days where I would say, "I feel like my brain is on fire" and I wouldn't be suprised if I have inflammation in the brain, and the blood vessels there have caused scar tissue to form. Because of the difficulty of getting that to show up on scans they wouldn't have seen it.

Basically, it's a chicken and the egg thing. If I test positive for vasculitis, I got the POTS from that.

[lauralulu]

The waiting is the worst part. I just hope it goes by fast for you and you get answers!

[Elenapap11]

Unfortunately i know exactly how you feel.I truly hope and pray that you finally get some answers....and a break from the pain and all those things that make life so hard!Good luck with the result.Hang in there and let us know what happens.

take care

[Notgivinup]

Wow, so sorry to hear about all your pain. It does seem like you're on the right track now. Good luck, and keep us all updated please.