Re: [SPAM] Does anyone know...

[Guest guest]

I have NS and have had constant sinus infection, dizzy spells, and am cold almost all the time. I asked my PCP about it as well as the Neuro and they said it is just something I get. I am not supposed to worry about it but this is the way it all started. So I worry. I have had NS since 05. I have had one flare up it was optical but a big dose of prednisone chased it away. I have just begun to walk (6 steps) without a walker. Who knows how far it will go. I am using a wheelchair most of the time and getting around. The Neuro said I am getting stronger but I still feel defeat. Time will tell.

My siblings are the ones in denial, my spouse is great. My children are also very supportative of my condition. It takes time. My son wouldn't come around me for a while after I got home from the Nursing home. It scared him a lot. He is a mamas boy. lol

I know the saying about God doesn't give us more than we can handle, and I wish he didn't trust me so much.

You can rant and rave all you want here. We all understand and will listen and understand.

Our Prayers are with you also as well as the others afflicted by this stinker. Hang in there and smile as much as possible it helps.

Hoping all goes well.

Jackie, from WI

[sPAM] Does anyone know...

Hi Everyone,I was wondering if you start out with nodules in your lungs and that demon sarcoid goes to the brain or spine and effects them?? There is so much the rhuemotoligist didn`t tell me!! Maybe she thought she would scare me more, like the nodules in my lungs didn`t already scare me till I knew that it wasn`t Cancer.This seems to be worse then Cancer because I think peple endure it so much longer.Of course I would feel a little bit better if I hadn`t been in a head on car accident in `93, punctured my right lung when 2 ribs broke and have scar tissue in right lung from that.It did get me to quit smoking thou. And sometimes I go for 3 days without using my inhaler.Does anyone else have alot of sinus infections, middle ear infections, vertigo at the same time? How about feeling cold all the time like you have a fever ALL the time, a slight cough, choke easily, and nose always runs in morning??I would appreciate any help I can get since my husband and 3 grown children have no idea what I am going thru or feeling. My husband is good about cleaning the house but he is still in denial. He doesn`t like to think about how bad I could be in the future. But I am an optimist, always have been and always will be.I believe God doesn`t give us more than we can endure. Can anyone tell me if you can collect social security disability with this disease? I guess you have to wait a long time to get it thou. Thanks so much for letting me let off some steam. This is so much better then putting my fist in the wall considering it is dried up and cracked from extreme dry skin.May God Bless each and everyone of you, and we need to pray for each other for a cure. LizP.S. You know, no one has ever gone on a talk show and discussed this disease so people know about it.I did write to Oprah, but never heard back!!!

[Guest guest]

I was wondering if you start out with nodules in your lungs and that demon sarcoid goes to the brain or spine and effects them?? There is so much the rhuemotoligist didn`t tell me!! Maybe she thought she would scare me more, like the nodules in my lungs didn`t already scare me till I knew that it wasn`t Cancer.

Sarcoidosis can start anywhere in the body-- the lungs are just the favorite starting place. What is unusual is if it doesn't show in your lungs.

Many- in fact most, of the people that get sarc will have it in their lungs, and generally it doesn't effect them more than shortness of breath, or regular respiratory infections.

Most people have only a single body system involved-- so we are the "special" ones. What they are finding is that if you've been treated with Prednisone, weaned off, then the sarc reappears-- it generally will be in other body systems.

With sarc, what happens is that your immune system gets turned on-- and then doesn't get the signals to turn itself off. We produce to much TNF-a (tumor necrosing factor alpha) so by taking immunosupressants, we are telling our bodies that it doesn't have to keep attacking healthy tissue.

Once on them--- you need to stay on them-- and what we've all learned is that we just have to use common sense protections when out in public or when we are going to be around sick people. Hand washing, not sharing that fork or glass, and the fine art of Christmas shopping online, instead in the masses.

In extreme cases, like if you have to go to the hospital to see someone-- wear a mask--(surgical, not knitted in black...) and you may want to take it off before you go into the bank.

Once your MD gets the combination of meds that will work for you the progression of this disease can be slowed-- giving us a lot of years to perfect the fine art of "pacing" oneself.

Learning to listen to your body, sleep when it needs sleep, eat healthy, do whatever form of exercise you can handle-- (in whatever moderation you need) and appreciate the good days, is crucial to your quality of life.

I hope this helps, or at least doesn't confuse you more.

Sincerely,

Tracie

NS Co-owner/moderoatr

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