Hey Weggers!

If you're reading this that's a good sign. We are blessed. I'm currently very grateful to be able to see the page and think. Did not know my wegs could attack my brain. Lost vision, movement of my legs and am just getting out of the hospital. They had much difficulty finding wegs as the culprit. Without family MOTIVATION on the docs they might not have worked so hard, I fear, to find the elusive wegs diagnosis. Although they were wonderful and very helpful. It's just hard to spot and mine has been missed or minimized by doctors many times.

QUESTION: Has anyone else had Wegeners Neuropathy? Central Nervous System Involvement? Brain Hemorrhage? Vasculitic Stroke? Major Nerve Pain probably caused by Vasculitic process?

HISTORY:
1998 Wegs Onset. Major nerve pain in lumbar, legs, feet. Lung, Sinus, Eye, Ear, Major Joint and muscle attacks. Hive of Bee sting sort of joint and muscle pain. No Insurance causing Misdiagnosis as Lyme Disease. 2000 Diagnosed by Rheumatologist. Pred / Mthrxt 3yrs. No full Remission. 14 YEAR LIFESTYLE CHANGE INSTEAD OF TREATMENT: Low inflammatory diet change, Zen Meditation, Increase Anabolic / Metabolic Rate managed symptoms but always sick, unable to work more than 2-5 hours per day if lucky (nausea, fatigue, sinus, eye and ear, lung, rash). 2010 Wegeners Neuropathy crippling back pain not clearly identified by docs as wegs at the hosp or at rheumatologist. No Wegs Treatment. 2012- Took cymbalta which triggered wegs. Increase in Fatigue, Lung, Sinus, Joint, Eye involvement. Loss of vision. Sudden Loss of Hearing. No treatment, all symptoms continue to escalate. 2014- Wegeners Intracranial Hemmorhage removed control of left leg. Hospital confused but after much family encouragement found a right frontal hemorrhagic stroke "likely" vasculitic process. Meaning short of a brain biopsy they added up 2+2 and got Wegeners attacking my CNS and probably previously my nerves in the lumbar sacral area back in 2010 and 1998.

BOTTOM LINE: MOTIVATION to the doctors in front of us is my parting message. I've struggled with this and let them lead but I really need to have a written line of questions for them that I insist on answers for. Usually they say "I don't know" and I know I can't get surety. but there is almost always something more that we can do to test or treat. I owe this to my family.