Terminated from job

[newweg]

the rheumologist was first to mention it based on symptoms, my neurologist says symptoms not due to brain lesions...maybe allergy. Tested neg to allergy and I dont think I have allergoes. On 10mg predisone and zertec morning and night to help fight nasal congestion. When I get stuffy, eyes and swelling get worse.

[Al]

Symptoms may not be due to brain lesions. However, vasculitis could possibly by at the source of all the noted symptoms. (I'm hoping not the brain lesions, but I think you would need a neurologist with some vasculitis expertise to sort that out.)

Al

[newweg]

how is vasculitis different

[Al]

how is vasculitis different

I'm not sure what your question is. Different than...what? Wegener's? Vasuculitis just means inflammation of blood vessels. Wegener's is one kind of vasculitis; there are many more. Some of them are generally associated with ANCA; others are not. My point in raising the issue is that many doctors are unfamiliar with vasculitis and do not consider it in making a diagnosis, even when it is the closest fit for the symptoms.

Al

[newweg]

What you said is pretty much what my rheumologist said. He said I have Vasculitis and a auto immune disorder, he put wegners as a dx for now. My neuro does not connect the brain with it. Though rare, wegs can invade the brain, I think I read in 2% of cases. How do I find a neuro who understands wegners? I have no insurance for 2 wks until cobra can kick in, I had to cancel appts and tests. Wegs neuro in Phila PA area???

[Al]

What you said is pretty much what my rheumologist said. He said I have Vasculitis and a auto immune disorder, he put wegners as a dx for now. My neuro does not connect the brain with it. Though rare, wegs can invade the brain, I think I read in 2% of cases. How do I find a neuro who understands wegners? I have no insurance for 2 wks until cobra can kick in, I had to cancel appts and tests. Wegs neuro in Phila PA area???

I'd check with Dr. Peter Merkel, at the U. Penn Medical School. He is one of the best Vasculitis docs around, and could give you the right referral, or consult with your present neurologist. Otherwise, the next closest for your is Johns Hopkins in Baltimore. They have a full vasculitis department. But you would need a referral. I know that brain involvement is rare, but not so rare that it is above suspicion. Good luck!

Al

[newweg]

Thank you, I will call Dr. Merkel's office! Maybe rhuemologist will refer me th John Hopkins, I see him in 3-4 weeks.

[Dryhill]

Hi All

New Member - WG for last 5 years -luckily appear to have been diagnosed early hence (touch wood) no major organ involvement.

However due to Gastro problem (advised not likely WG associated) over last 12 months WG is gaining momentum and subject to updated Blood Tests I look likely that kidney biopsy required and 12 months of Cyclo/Preds which i am not looking forward to.

Off work over 6 months and likely may not return - Has anyone had experience of claims under Income Protection for WG - I have had periods of remission under WG (pred/mx dosages).

Not sure how Insurance companies view WG particurarly as under correct dosage of medication one can sometimes bouts of normality as regards day to day living

Hope furum members can help

Hi henrycandy,

Welcome to the forum. As to your question I am about to pm you.

Jim

[LisaMarie]

So sad...I am a nurse in a small rural hospital and we are like family...I know the places in the city would not accomadate my every 3 months trips to Mayo and KU...o am very blessed...your co workers violated HIPPA as well as ethics...I hope they get fired along with your boss who Fired u....even in nos fault states. They cannot fire u because you are sick

[newweg]

Not everyone is as kind as you. I am happy that most ex co workers are upset, shocked and supportive. I am not defined by my illness or my job. I have treated everyone I encounter with respect.
I always will. Thank you all for your comments and support.