wegener's granulomatosis

[bruce]

Hello i am new to this group and i have been just diagnosed with
wegener's granulomatosis,is there any one in this group with wegener's?

[Deb B]

Hi Bruce.

 

I do not have wegners.  However, I seem to have been hearing that quite often lately.  I feel that someone here should be able to talk with you about it.

 

Welcome to the group!

 

Is this your first autoimmune disorder?

 

Aloha,

DebB

[Hopeful Sojourner]

Hi Bruce,

Welcome!!!  This is Thomas and I have MCTD and I know very little about Wegener's Granulomatosis.  I am sure the group would like to know more about you and your current situation.  We would also like to know if you have any questions about autoimmune disease and if you have any needs that we may have ideas that might help you.  If you would care to let us know a little about your disease, I'm sure we could all use the information.

I'm glad you chose to join our group and I hope we can be of service to you.  We have a "fearless leader" named Barb and she is just the best with a knowledge base that marvels all.  We hope we can help you become your own best advocate as we find this to be the real key to meeting the challenge of autoimmune disease.

Again, welcome and feel free to post at any time.

Sending you my best,

Thomas

[bruce sewer]

thak u Thomas

[bruce sewer]

Thank u Deb

[Barb]

Hi Bruce,
I have a mutation of Wegener's and Sarcoid of the brain. Anything I
can do just yell
Barbara Yodice, Founder of the Autoimmune Informatin Network and
Multiple Autoimmune Patient
www.aininc.org

[bruce sewer]

Wow a mutation,that's diferent but then again we dealing with a weird disease i would like know more about your experiences with wegener's lets share.

[Laura C]

Hi Bruce - welcome to the group. I am also a new member and was also
diagnosed recently with Wegener's Granulomatosis. I got sick in 2007
with what the doctors thought was the flu but after a week of taking
antibiotics and then winding up in the hospital in isolation with a
zero white blood count and boil like lesions under my arms and in my
groin area and my mouth filled with sores and in extreme pain, they
knew it wasn't the flu. However, they didn't know what it was
either. I went through many doctors and tests and was sent home
because my insurance wouldn't let me stay any longer. I found a
doctor in Newark Beth Israel Hospital and he referred me to Dr. Robert
Lahita who I continued to see for about two and a half years. I again
wound up in the hospital only the second time it was much worse and I
almost died. Dr. Lahita didn't want to put a label on me as he said I
was atypical and my symptoms fit into many different diseases and if
he diagnosed me, I would be treated with that disease and because I
was such an unusual case and he didn't know what disease I actually
had, he left it opened. I was put on prednisone and continued to see
him for another six months and then found another doctor in NYU by the
name of Dr. Yazici. I am currently seeing him and still taking
prednisone and bactrum 3xs a week and was also recently taking
methotrexate but it wasn't working and he stopped it. I have extreme
pain in my joints, am so tired all the time and then go through
periods where I am up and cannot sleep but do not have any energy to
do anything because I am in so much pain. My meds are changed every 6
weeks until they can find the right combination for me but I am
growing impatient waiting and feeling like I am but Barbara and the
other members here have given me hope and the strength to continue and
not give up. I haven't been feeling well the past week and an not up
to a long email but please feel free to email me if you have any
questions or if I can be of any help to you or you just want to vent
to someone. Welcome again, Laura

On Sep 28, 9:48 pm, bruce <bigbruc...@gmail.com> wrote:

[Laura C]

Bruce I have a post under another the topic called Hello which is more
detailed if you would like to read that. Also if you can share the
details of what your symtoms were when you got sick and how you are
being treated, I would love to hear them as they maybe helpful to me
or someone else here. Thanks again. laura

On Sep 28, 9:48 pm, bruce <bigbruc...@gmail.com> wrote:

[bruce sewer]

I'm sorry to hear that u are in so much pain Laura.I started feeling sick on august 8,2009 it started out as an earache,so i tried to treat it with earache medicine that didn't work.then the cold came and the night sweats,the shivering,loss of hearing, the weight loss,no apetite,weak,chest pains,weizing, and some nights i just couldn't breath..
tiredness etc.So this all happen to me on the week of august 8.So i went to a local clinic and they perscribed antibiotics and it didn't work.I went back to the clinic still feeling sick and i cant hear for a second time the gave me stronger medicine and it didn't work so 3 weeks pass by i feel as if i am i gonna die.So i go back to the clinic on august 31.for the third time and this time they take an ex ray of my lungs and they find a big mass in my left lungs everyone gets nervous and starts pulling out dust mask and saying TB and i should go to the emergency room right now.So i go and they admit me i had like maybe 6 or seven diffrent doctors trying to figure out what was wrong with me and they didn't know what i had.They put me through all kinds of test all negative.Only 1 doctor new what was wrong with me Dr,Gillespie she has me taking prednisone,folic acid,amoxicilin,famotidine,600mg bone health and a chemo drug named cyclophosph and these drugs are really working im not tired any more not felling sick and im able to exercise.I have to see Dr.Gillespie every week to monitor me.And also i had to change my diet so now i am eating alot fresh fruits and vegetables all organic Samon no more dairy products.Flax seed oil is good to.And drinking 8 to ten full glasses of water a day,i feel so much better.I thank u for your story Laura i hope my story might help u in your fight with this disaese,and i will update u with my progress and i hope u do the same.

[Barb]

It is kind of a long story. The cliff note version is that I had
lesions forming (more than 10) in the brain and they did not know what
exactly they were. I lost vision and several really bad episodes so
they tested my spinal fluid. They found that I had antibodies to both
sarcoid and wegener's. They were very advanced sot hey are doing
radiation and drufg combo therapy to try to alleviate the symptoms and
prevent further growth. My schedule is very hectic and I can also be
my own worst enemy. You would think I would have learned by now with
more thasn 10 autoimmune diseases and 2 cancers. I guess I am a slow
learner.

Welcome to the group! Use it as often as you need.

On Sep 28, 9:48�pm, bruce <bigbruc...@gmail.com> wrote: