Re: Back to new member e, welcome from

[Guest guest]

Im sorry i must have missed this post on welcoming you to our group.

you have come to the right place to vent, cry and laugh, we are a huge....family and are there for each other.

you will find a wealth of imformation from the group and the moderators, they are the best.

i've been part of the group i think since 2001, not sure i have very poor memory, and this group has nothing but brought my spirits up since i've joined...So welcome home Matine,

in PA.

Many Blessings and Hugs Abouhamama

Welcome e to the group. I'm sure you will find a lot of info here and a lot of support.

Check out the links and archives too.

Hugs,

Debbie T.

Co-moderator

From: e Pirozzi <martinepirozzi1965 (AT) yahoo (DOT) com>Subject: new member intro : hope i joined the right groupTo: Neurosarcoidosis Date: Sunday, July 27, 2008, 6:35 PM

hi everyone. happy Sunday evening where ever you are. i tired writing this earlier but my internet connection got cut off somehow. drats!

My name is e I'm 43 and from Toledo,Ohio. I was diagonosed with Sarcoidosis last year by a doctor at Cleveland Clinic in Cleveland, Ohio. I also have had an internal bleeding disease known as ITP since 1998 which took away my immune system. Up until this year i had been antibody infusions but I started having side affects from them and I started bruising during one and was hospitalized the next day. My hematologist in Cleveland when i went to see him checked my Sarcoidosis and I was very elevated in the numbers. I was 80. so they took me off the infusions. In August I go to Ann Arbor, Michigan to see a Sarcoidosis specialist. I'm not on any medication so far for it and haven't been for almost a year. I've been experiencing high degrees of pain. Last week I two days where I couldn't walk on my right leg. I also have fibromyalgia along with other myalgias. I have begun to get the dry cough from Sarcoidosis quite a bit. My white count was rather high last week at 13.9 and I have been brusing ever since I've been off my infusions. My doctor put me on iron but it doesn't seem to be helping. He told me if my counts don't start to change through the iron we are looking at another issue.

I thought fighting ITP was hard but this is harder. When I was in the hospital a few months ago a nuerologist came into see me because of the headaches i had been having to often. He asked me if anyone had talked to about Neurosarcoidosis and i said not at the present time. So i have alot of health issues at once. the problem is ITP is antiinflammatory and Sarcoidosis is inflammatory. I have no immune system and I'm allergice to prednisone. I 'm hoping after next month they will put on Remacade. I have heard good things about it .

Well didn't mean to write a book for my first intro . LOL I hope to get to know some of you and you will accept me in the group. I really need the support and i hope i have joined the right group. i had belonged to another one last year but i was at a difficult emotional level of what was happening to me. so now i truly need the support.

bless you all

martine

ps i have been disabled since 2001 Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.

[Guest guest]

thank you for the warm welcome. yes i do feel that i have joined the right group for my situation. the information i'm getting is amazing. we really do learn from each other in regards to how Sarcoidosis is for each one of us. there are days when i feel that no one understands what i'm going through. i have been sick now for 10 years with my other blood disease ITP. i was diagnosed with Sarcoidosis last year by Cleveland Clinic. i have gone untreated and now my Sarcoidosis numbers are high at 80. i'm seeing a specialist in Michigan on August 20 i'm praying that he prescribes treatment for me. whether its Remicade or something else. i have three more new Sarcoidosis bumps near a bruise on my right leg today. i have a had a terrible coughing spell this morning. so its back in

bed again today.

i've been dealing with the fatigue also. but i have had that off on the last few years.

thanks so much for making feel at home.

sincerely martine

From: e Pirozzi <martinepirozzi1965@ yahoo.com>Subject: new member intro : hope i joined the right groupTo: Neurosarcoidosis@ yahoogroups. comDate: Sunday, July 27, 2008, 6:35 PM

hi everyone. happy Sunday evening where ever you are. i tired writing this earlier but my internet connection got cut off somehow. drats!

My name is e I'm 43 and from Toledo,Ohio. I was diagonosed with Sarcoidosis last year by a doctor at Cleveland Clinic in Cleveland, Ohio. I also have had an internal bleeding disease known as ITP since 1998 which took away my immune system. Up until this year i had been antibody infusions but I started having side affects from them and I started bruising during one and was hospitalized the next day. My hematologist in Cleveland when i went to see him checked my Sarcoidosis and I was very elevated in the numbers. I was 80. so they took me off the infusions. In August I go to Ann Arbor, Michigan to see a Sarcoidosis specialist. I'm not on any medication so far for it and haven't been for almost a year. I've been experiencing high degrees of pain. Last week I two days where I couldn't walk on my right leg. I also have fibromyalgia along with other myalgias. I have begun to get the dry cough from

Sarcoidosis quite a bit. My white count was rather high last week at 13.9 and I have been brusing ever since I've been off my infusions. My doctor put me on iron but it doesn't seem to be helping. He told me if my counts don't start to change through the iron we are looking at another issue.

I thought fighting ITP was hard but this is harder. When I was in the hospital a few months ago a nuerologist came into see me because of the headaches i had been having to often. He asked me if anyone had talked to about Neurosarcoidosis and i said not at the present time. So i have alot of health issues at once. the problem is ITP is antiinflammatory and Sarcoidosis is inflammatory. I have no immune system and I'm allergice to prednisone. I 'm hoping after next month they will put on Remacade. I have heard good things about it .

Well didn't mean to write a book for my first intro . LOL I hope to get to know some of you and you will accept me in the group. I really need the support and i hope i have joined the right group. i had belonged to another one last year but i was at a difficult emotional level of what was happening to me. so now i truly need the support.

bless you all

martine

ps i have been disabled since 2001

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.