Re: Just Been Diagnosed With Sarcoid ....

[Guest guest]

Sorry to meet you under this condition, But welcome to our family. I was dx with neurosarciod 2001 and been on chemo since to kill my white blood count. If you read or talk to your dr . he will explain its your ammune system that attacking your own body and organs. so what how much your trying to boost your aummune system.

welcome and many blessings and pain free day

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[Guest guest]

I moved to another State and had my eyes check, this Doctor sent me to a retina specialist.He advised getting blood tests,etc.My eyes are effected with alot of white cells and have been taking predisone dropsfor 3 months. I did have a biopsy done and the nodules are definitely sarcoid and not Cancer.I am eating better,drinking stuff to improve my immune system and my eye sight since that is what is bothering me the most now.

HI liz,

Welcome to the family.

It sounds like you have an Ophthalmologist that understands this disease. It was my Ophth that diagnosed my sarcoidosis 17 yrs ago. I had bilateral iritis at the time.

My lungs were also involved at Stage 3 at that time.

I see where they are treating you with prednisone. One thing to know is that Pred is great for the short period of time, but to have to use it longterm is really hard on the body. It has a tendency to fire up the blood sugars, harden the arteries, make the bones brittle and create major mood swings.

What your MD's originally thought was that your sarcoidosis would "burn itself out" in a couple of years. This is "old school" and since you already have it in both your lungs and eyes, you will need progressive care.

There are many "steriod sparing" meds out there-- Plaquenil seems to work well for the lungs and memory involvement, Methotrexate is good for the body pains. Imuran, Arava, work for some.

What we really need is a good combination that is taylored to our personal needs, and that is a trial and error process.

One thing to be very cautious of is the iritis. If the iris of the eye gets inflamed (and this is what you're being treated for) (they may call it uveitis) the chance of glaucoma becomes even higher than the norm. So if you find yourself even more sensitive to lights-- (photophobia) get back into the Ophthalmologist. This is very, very important, since damage done by glaucoma does not repair itself.

In our LINKS and ARCHIVES - the address is at the bottom section of this and every emal that goes out-- you can research both these issues and you'll find an enormous amount of information. You are welcome to print out any of the articles and take them to your MD's- you'll find that you will be their teachers on sarcoidosis.

I'm glad you found us, we have almost 500 members and so many of our members have been on this journey for many years. We laugh, cry, and hold each other in our climb-- and it's a good thing.

We do have 2 owners/ Darlene and Tracie (me) and 4 moderators (Rose, , Debbie and Kim) so there are plenty of us to answer questions. Right now, we do happen to all be in flares- so if a day goes by without a reply-- give us time- we will get to you!!

Sincerely,

Tracie

NS Co-owner/moderatorWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Hi, I'm sorry to hear you have it but it sounds like they caught it early and your on top of it. I was exposed to mold as well and high humidity and had no clue I had it until I had serious vision problems and severe pain. I wish you the best Rick wrote: Hi Everyone,I was just diagnosed with sarcoid last March.I have 2 small nodules(one on each lung) and one 3 inches on windpipe.But I originaly had a chest xray in 12/04 then had a Cat

scan in Jan.`05. A small nodule shown up then and the Doctor I had been going to said to wait and have another Cat scan in a year.A year went past, tired alot and had another Cat scan in Jan.`06 showed it had not gotten any bigger. I did go see a Pulmonary Doctor in `05 any he wasn`t concern.I moved to another State and had my eyes check, this Doctor sent me to a retina specialist.He advised getting blood tests,etc.My eyes are effected with alot of white cells and have been taking predisone dropsfor 3 months. I did have a biopsy done and the nodules are definitely sarcoid and not Cancer.I am eating better,drinking stuff to improve my immune system and my eye sight since that is what is bothering me the most now.I figure this is going to be a long, long duration.Don`t understand at my age how I got this(I am 58)but I do believe it is enviromentaly involved since where I lived between `02 and `05 was a below ground

apartment with mold.I would like to hear from others and their circumstance.

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[Guest guest]

sophiewos@... my name is sophie i have neurosarcoidosis. i am a mother of 3. i cant seem to get a doctor that wants to treat me. i have had brain surgery. since my seperation i have not been taking meds anymore. i feel it destroyed my mariage. i wish you all the best in your treatment i hope your loved ones are patient with all mood swings make sure you let the doctors know when your emotions are not right. if you come across anyone who has information with this disease in thier brain i would love any advice thank for your timeJessicAbouhamama@... wrote: Sorry to meet you under this condition, But welcome to our family. I was dx with neurosarciod 2001 and been on chemo since to kill my white blood count. If you read or talk to your dr . he will explain its your ammune system that attacking your own body and organs. so what how much your trying to boost your aummune system. welcome and many blessings and pain free day Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

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[Guest guest]

Hi Sophie,

You've found a group of almost 500 members where almost everyone of us has NS.

What kind of information do you need? What kind of meds are you taking now? How did they diagnosis your NS?

So many people end up with problems with their relationships, marriages, jobs-- chronic illness can do that. Even the best relationships can fold under the pressure of a spouse being sick. The idea of caretaking for some is just not something some people can do. They just aren't cut out for it.

I will tell you, just the other day, one of our members husbands did write a post that stated that as frustrating as living with someone with chronic illness is-- he'd rather be able to be irritated at having to get that glass of water, than be wishing his wife was still here to get the water for...

My point being, there is hope!

In our ARCHIVES and LINKS we have a wonderful collection of articles and posts that cover so much territory, and you are welcome to print them out and take them to your MD's with you. The site address is at the bottom of this and every email that goes out. So just scroll down.

AS for questions, someone to relate to that is going thru what you're going thru-- you've found us. We share on this group format, and you'll find that you'll get several answers to your email.

We have 2 owners, and 4 additional moderators, and even tho we are all fighting NS also- we do get online and make sure you get the help you need. It may take a day or so-- as we're all in flare right now. So be patient, and we'll definatly get back to you.

I'm sorry that you had to find us-- but glad you did. This disease is best handled with the strength of friends, and you've just found a bunch!

Blessings,

Tracie

NS Co-owner/moderator

sophiewos (AT) yahoo (DOT) com my name is sophie i have neurosarcoidosis. i am a mother of 3. i cant seem to get a doctor that wants to treat me. i have had brain surgery. since my seperation i have not been taking meds anymore. i feel it destroyed my mariage. i wish you all the best in your treatment i hope your loved ones are patient with all mood swings make sure you let the doctors know when your emotions are not right. if you come across anyone who has information with this disease in thier brain i would love any advice thank for your timeJessicAbouhamama (AT) aol (DOT) com wrote:

Sorry to meet you under this condition, But welcome to our family. I was dx with neurosarciod 2001 and been on chemo since to kill my white blood count. If you read or talk to your dr . he will explain its your ammune system that attacking your own body and organs. so what how much your trying to boost your aummune system.

welcome and many blessings and pain free day

Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Who's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Hi,

I too was recently diagnosed with NS in October 2007 and am in the process of trying to learn as much as I can. I live near Duke Medical Center in NC but to my knowledge there are no NS specialists here. So, I'm being followed by a neurologist who has me on 40 mg. prednisone.

I'm curious to know what kind of experiences the rest of you have had. Did you primarily learn about this disease by seeking out answers for yourselves? Any suggestions to those of us who are just learning about it? I'll have to admit that, even though I've been a nurse for 30+ years I had never even heard of sarcoidosis much less neurosarcoidosis.

So far, I've been more of a "lurker" than a participant on this list but it has been so great to know that there are others out there who understand. Thanks to all of you and esp for the moderators for maintaining this group.

Sharon Cooke, Cary, NC

"Life is what happens between our plans"

Sorry to meet you under this condition, But welcome to our family. I was dx with neurosarciod 2001 and been on chemo since to kill my white blood count. If you read or talk to your dr . he will explain its your ammune system that attacking your own body and organs. so what how much your trying to boost your aummune system. > > welcome and many blessings and pain free day> > > > > > > ---------------------------------> Who's never won? Biggest Grammy Award surprises of all time on AOL Music.> > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>