I am new here and new to this.

March 17, 2008

Tracie, Wow, I'm so sorry to hear about what a long road you have been down with this disease. 18 years, wow. Well, I'll just let you know what I am experiencing. Like I said before, facial palsy for the 3rd time (still have it on the right side), bad blurry vision in my right eye, very bad headaches daily, arthritis that has just set in in the last couple of weeks, muscle cramps in my lower legs so bad that I have a hard time extending my feet (can't go up or down stairs), if I happen to squat down to do something, I need assistance getting up, I have a strange rash on my hands and arms, but only the under parts of my arms. But, it's a red rash and on my arms its only red circles everywhere. It's not a topical rash, either...it's under the skin. It doesn't hurt or itch, it's just there. My memory has gotten to be awful, can't remember anything. I have been on Prednisone for 3 months, just got off 3 weeks ago. But, that is the only

medication I have been on so far. My neurologist has never seen a NS patient before, so he pretty much isn't sure what to do I think. I will write more later, my son will be getting home from school in a few minutes. Thank you again for writing back to me....now I don't feel all alone. Christytracie feldhaus wrote: , NS is a generally a long slowprogression,and there are medications that can helpslow that progression. Many of us have had sarcoidosis for

many years-- I'mhitting 18 yrs the end of March-- it started aspulmonary sarcoidosis and iritis-- inflammation of theiris of both eyes. I did a couple of years on highdose steroids-- and we put it into remission for 5years. I ended up in a job that was extrememly stressful,extremely demanding and required that I work 45 plushours each week. We were monitored on our calls, withthe constant threat that if we did anything wrong-- wewould be unemployed faster than lighting. When you have any kind of auto-immune disease, thiskind of enviroment is so very hard on the immunesystem, that mine decided to go back into active sarc.Once again, it was the lungs that got screwed up, andI found myself on oxygen 24/7. My eyes also becameinflammed, and the arthritis, the bone and joint andligament pain went thru the roof. So I knew I was introuble.My pulmonologist (not the original one) insisted I

goback on high dose prednisone, and for me-- what littleinflammation it took out of my body was offset by theleaching of the minerals in my bones- which made mysarcoid-induced arthritis so much worse. Fortunately, I had worked for a medical group, and oneof the MD's that we'd hired had done her MastersThesis on sarc. So I begged her to take me on as apatient. She knew she was behind the time on sarc,and was and is bright enough to send me to Sacramentoto a Rheumatologist that really knows auto=immunedisease. He has been paramount in getting me the medsI needed.To find the combination that will work for you is nota fast process. You will probably be treated withprednisone, or hopefully they'll get you onMethotrexate and spare the steroid-effects. We knownow that when you've been on steroids, and then comeoff them-- that this is the population that seems tohave progressive- chronic

sarcoidosis. This makes methink that the steroids only mask the problem.We do produce too much TNF-B (tumor necrosing factorb) and this is a protein in our immune system thatshould be clearing out white cells when they'vefinished doing their job. White cells are theinfection fighters, followed by TNF-a to clear themaway, then TNF-b to clear out the tnf-a. However, ourimmune system doesn't clear out these cells, it justbuilds upon them-- forming clusters of granulomastumors. So what we need is immunosupressants that slow downthe TNF-b. Many of our members have responded well toMethotrexate, Plaquenil, Imuran, Arava, Prednisone,various DMARDS (Disease Modifying Anti-RheumaticDrugs) and Biologicals (BRMS-- Biological ResponseModifiers.) These are Enbrel, Humira, Remicade andthere is a new one that I'm not familiar with. It is a process where you start one medication as lowon the totem pole

as possible, and if it doesn't work,or you need to add another to handle other symptoms--then you add one thing at a time. Otherwise, if youhave side effects, you'll not know what is causing theproblem.I think the most important thing is to pace yourself,listen to your body-- if you are tired--rest. If youhave to work-- file for FMLA (Family Medical LeaveAct) so that your job can't be jeopardized if you haveto do multiple MD appts, or have days that you arejust too wiped out to work all day. Anyhow, I'm going off on tangents tonight, Iapologize-- but if you can specifiy your symptoms-- wecan get more specific with our answers.Sincerely,TracieNS Co-owner/moderator --- christina <paulsgirl75 (AT) yahoo (DOT) com> wrote:> ---Thank you so much Tracie for getting back to me> so soon. I have > just been recently diagnosed,

about 3 weeks ago, and> there just > seems to be sooo many things going on with my body> all so fast, that > I am kind of scared. I can't even tell you when the> symptoms began > neurologically, but physically it all just started> for me on > December 6th. I woke up and the right side of my> face was paralyzed. > I have high blood pressure, so I immediately thought> the worst. They > told me I had Bell's Palsy, but 2 weeks in to it,> the left side did > the same thing ( so now my whole face was). Then 3> weeks into that, > it went back to the right side, where it currently> is at. The > doctor's told me right away it wasn't Bells. They> had suspected NS. > Had the biopsy 2 weeks ago, and confirmed. Now it> just seems things > are just getting so much worse so fast!> > > In Neurosarcoidosis , tracie> feldhaus > wrote:> >> > , what's going on? how can we help?> > > > sincerely,> > Tracie> > NS Co-owner/moderator> > --- christina wrote:> > > > > I would like to talk to someone about my> symptoms> > > and what I am going > > > through. I am kindof confused and scared about> what> > > it is that's going > > > on. Thank you.> > > > > >> >> > >

Never miss a thing. Make Yahoo your homepage.

March 17, 2008

, Thank you for writing back to me. It means so much, truely. I have been so depressed the last couple of months, because I feel so alone. Nobody around me understands what I am going through. My neurologist has never had a NS patient before, so he's not completely sure what to do. My husband and I are growing apart because he doesn't understand, and it's hard for me to explain to him what I need from him right now. I'm just in pain and scared most days. But, I have a 10 year old son that keeps me going. Well, I will write more later, my son will be getting out of school in 10 minutes. Thank you again. ChristyJessicAbouhamama@... wrote: Well welcome to our group, sorry to meet you because of this dreaded disease. But we a very close group and we all went through and some still going through the new stages of DX. It can be a very scary disease, After 7 yrs of being dx with NS I am still scared at what could happened down the line. But we must all stick together and lean on each other. We are all in the same boat. We are here to answer any questions you may have and help in way we can. We cry together, laugh together and when nobody understands come to us, because We all understand what your feeling. Welcome again many blessings and hugs and a pain free day It's Tax Time! Get tips, forms and advice on AOL Money Finance.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

March 17, 2008

, Thank you for writing back to me. It means so much, truely. I have been so depressed the last couple of months, because I feel so alone. Nobody around me understands what I am going through. My neurologist has never had a NS patient before, so he's not completely sure what to do. My husband and I are growing apart because he doesn't understand, and it's hard for me to explain to him what I need from him right now. I'm just in pain and scared most days. But, I have a 10 year old son that keeps me going. Well, I will write more later, my son will be getting out of school in 10 minutes. Thank you again. ChristyJessicAbouhamama@... wrote: Well welcome to our group, sorry to meet you because of this dreaded disease. But we a very close group and we all went through and some still going through the new stages of DX. It can be a very scary disease, After 7 yrs of being dx with NS I am still scared at what could happened down the line. But we must all stick together and lean on each other. We are all in the same boat. We are here to answer any questions you may have and help in way we can. We cry together, laugh together and when nobody understands come to us, because We all understand what your feeling. Welcome again many blessings and hugs and a pain free day It's Tax Time! Get tips, forms and advice on AOL Money Finance.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

March 19, 2008

Christy,

Thanks for the info. My docs haven't biopsied anything so I am trying

to talk to different folks about what has happened to them. My BP

started over 10 years ago. It happened at the same time that I had

shingles of the left side of my face so nobody really paid attention to

it. About 6 months after the shingles I started with the chronic BP and

trigmenial neuralgia. I have been suffering every since. The only time

I did not have it was the period of time when I was on Imuran.

I have what I think is an enlarged salivary gland and when I go to the

dentist to have my teeth cleaned this month, I am going to bring it up

and ask what it is. I have had it for a very long time; as long as my

parotid glands have been slightly enlarged. My left parotid was the

size of an egg when I had shingles.

If you don't mind, how old is your son? Is he your only child? I was

lucky enough that my children were in their late teens when I really

started getting sick so I didn't have the additional stress of

motherhood. I did have the stress of two weddings though. Thank the

Lord I didn't have girls. I am not sure if I could have gone through

that being sick. Boys are the easy part of a wedding.

Take care.

Terri

> > >

> > > > I would like to talk to someone about my symptoms

> > > > and what I am going

> > > > through. I am kindof confused and scared about what

> > > > it is that's going

> > > > on. Thank you.

> > > >

> > >

> >

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with Yahoo!

Search.

>

March 19, 2008