Diagnosed today with an auto-immune disease

[latexscooter]

First, I just want to start out with a big thank you for whomever thought up having this forum. I so badly need to express my anxiety and fear but I've been hampered as I've watched my family fall apart and cry. Here is my story. If there is anyone else out there who has this diagnosis or knows of a group please let me know. If you believe in prayer, I would appreciate being included in yours. Here's my story.

I've been sick on and off for the past several months. A variety of things led their way to shingles a couple months ago and then on April 17 they thought I had a lung infection. They gave me some z-pack and other ancillary drugs to help deal with it and said you'll be better in 7-10 days. By the last couple days of April I was feeling much better - not recovered but not like I was breathing underwater either. But then on May 1 it seemed like it was coming back with a vengence. I remember the day vividly because it was my daughters 7th birthday party and I was having trouble breathing. The following Tuesday I was back at the doctor who said it must have turned into bronchitis and I got a shot of steroids and some cough syrup. Things seemed to improve for a few days and then it seemed to turn bad again. More breathing underwater. I visited the doctor again who put me on a 14 day regimen of steroids, new inhaler, singulair and a steroid inhaler. She also ordered a comprehensive panel of blood tests and a chest x-ray. I've been taking my drugs and finished them like a good patient. And although I don't feel like I'm drowning I do get short of breath easily and I can't talk and do something at the same time, I'm exhausted, have a terrible non-productive cough but it's better than I was.

Today, I got a call from the doctor and they asked to see me in person to go over the results of the blood panels. Many parts were good or great. My chest x-ray was clear. But then they got to the two parts that determined my diagnosis. They did two tests specific to auto-immune disease and I tested positive for both. My liver tests were not so good either. My one liver enzyme level was 30% above recommended high and the second was three times that level.

Long story short, they believe I have the auto-immue disease Sarcoidosis. Apparently my body got bored and decided to attack itself. Starting with the lungs, moving to the liver and then it usually moves to the heart and brain. They are concerrned with the progression in the liver and what that can and does mean.

I have an appointment to meet with another doctor tomorrow. Find out next steps. I will have to see an auto-immue specialist, pulmonary specialist and possibly another doctor who specializes in something else I can't remember. My doctor said that it they can't get it to go into remission it could be fatal. I'm 40 years old with a 7 year old daughter. That thought terrifies me.

I'll hopefully know more tomorrow and what I'd love most to hear is, "whoops, that was a mistake," but I don't expect that to happen.

The funny thing is that we leave for Disney in 8 days. I guess it's good because they elimination of stress will be critical in my recovery, so says my doctor. But I can't help but wonder if this will be my last time. I don't know.

Thank you for listening and thank you for your prayers. And please pray for my family as well. I want them to have some peace in this.

Good night, everyone.

 

[es45]

I'm praying for you and your family to find strength to handle what lies ahead. I know little about the disease, other than there are treatments to slow the progression and relieve the symptoms, provided the initial diagnosis shows that certain parts of the body aren't affected. I'm praying that tomorrow's visit and the appointments with specialists will give you assurance that you are treatable; I can't imagine having the difficulties in breathing that you are experiencing.

 

[minniecarousel]

Prayers for you from me.

 

[AnnaS]

Prayers for you.

 

[Christine]

Good luck to you!

I know two people living with sarcoidosis. The initial diagnosis is scary. Hopefully they can get it under control.

 

[minniebeth]

Praying for you~ have a WONDERFUL trip in WDW and relax, enjoy, laugh and have fun. I definately think it does wonders for spirit AND the body!

 

[minkydog]

Long story short, they believe I have the auto-immue disease Sarcoidosis. Apparently my body got bored and decided to attack itself. Starting with the lungs, moving to the liver and then it usually moves to the heart and brain. They are concerrned with the progression in the liver and what that can and does mean.

I have an appointment to meet with another doctor tomorrow. Find out next steps. I will have to see an auto-immue specialist, pulmonary specialist and possibly another doctor who specializes in something else I can't remember. My doctor said that it they can't get it to go into remission it could be fatal. I'm 40 years old with a 7 year old daughter. That thought terrifies me.

First, my sympathies. Second, I just want to give you some encouragement. My 53yo husband has had Sarcoidosis for 7 years(age 47) and we have learned a LOT about it.

Sarcoidosis is not usually a death sentence. In fact, in about 30% of cases they have to do little or nothing and it eventuallygets better. In another 30% of cases, they treat it with steroids for a few months and it eventually gets better. In another 30% of cases it becomes a chronic illness, meaning it more or less goes into and out of remission. That means you have periods of stability where everything is going pretty well and periods of illness. Only about 10% of persons with sarcoid go on to develop progressive illness. Only about 5% of *those* go on to have sarcoid in their heart or brain. The vast majority have it in their lungs or their skin.

DH has been in that 5% category. He actually developed it in his brain first, highly unusual. Then he got it in his lungs and he was pretty sick for awhile, but eventually got stable. He has been on Prednisone for about 7 years(and he has not gained any weight at all!) He has had some hospitalizations for pneumonia--that's goes with any lung disease. The sarcoid entered his heart early on and he has a pacemaker now, gives him NO trouble at all. DH's health waxes and wanes. He is no longer able to work due to the severity of his illness, but I reiterate: that is not a common scenario. Since retiring, his health has actually gotten more stable. He takes a lot of meds and inhalers, and there are things he can't do, like run or sing and he gets tired easily. But we camp a lot and he is able to manage very well.

The key with sarcoidosis is to stay on top of it. I imagine that right now it's a pretty scary place to be. I know it was for us. But with time we have come to accept it and we have found that it's something we can all live with. And yes, there is a chance that DH might eventually die from this disease. And we still have two teens at home, one of whom is profoundly retarded like a 1yo. But we just can't dwell on that. There's still laundry to be done and school functions to attend and church and dance and movies and date night and...you get the picture. Our lives have changed in a lot of ways, but we have a happy life. As a result of this illness we have become more compassionate, more committed to helping others and each other, and more patient. I hope you will too.

Feel free to PM me if you want to.

 

[DisNance]

Hi,
I also have an auto Immune disease. It's Scleroderma. I've been living with it for about 3 years but, it has now started to affect my lungs. Can't do the things I want to do anymore. My daughter is getting married on 8/21/10. We are all supposed to go with her on her honeymoon. To Disney of course!! We have been going there as a family every year since 1986. I'm terrified that this will be my last trip with her. I want it to be the best vacation ever for her! Thanks for listening and try to stay positive. Some days are harder than others
Nance

 

[patsvette]

i too have sarcoid.im 41.Ive been battleing it for over 5 years now.Prednisone keeps me going.I had shingles on the side of my head also in december most painful thing ive ever had even kidney stones was a walk in the park.I still get nerve twitchs from it in my scalp in 3 areas.as far as the sarcoid.i have it in my lungs the worse,rushed to hospital for bleeding lungs they started to fill up i felt like i was drowning then started coughing it up i was rushed to er and had a nice stay in hopsital for afew weeks. (eventually lung transplant is inevitable)also in my left eye,lymph nodes.Weve tried weaning off the pred. been almost 2 years straight this time,but i just can get down lower then 10 mg a day.I get sick again,no energy,bones ache.so now back up to 20 mg a day.The brain fog is getting worse i cant remember anything.Also now ive got ostepenia and borderline osteporosis so ive been taking fosomax to help for that.So i know where your coming from so hang in there hopefully they found it early for you they misdiagnosed me too long and my lungs are too far gone.But i push and push i dont sit around and dwell on it,yeah my wifes worried she knows what the worse is.We have a 5 year old and i want to be around to see him graduate school but in reality i might not .

 

[WHIT1]

Hi,
I also have an auto Immune disease. It's Scleroderma. I've been living with it for about 3 years but, it has now started to affect my lungs. Can't do the things I want to do anymore. My daughter is getting married on 8/21/10. We are all supposed to go with her on her honeymoon. To Disney of course!! We have been going there as a family every year since 1986. I'm terrified that this will be my last trip with her. I want it to be the best vacation ever for her! Thanks for listening and try to stay positive. Some days are harder than others
Nance

Sorry to hear you have Scleroderma and that it has started to affect your lungs. I too have Scleroderma, in fact for 20 yrs now. I have CREST, but I do not have the C AND I hope I don't get it. Its a hard disease to deal with and I have had alot of hard experiences with it, but I am now just holding my own. Have you seen pictures of people who have Scleroderma? Sometimes we all have the same look especially around the mouth. When it really works on your skin you look like a burn victum. So far my skin is doing ok and my vital organs are staying ok. I do have asthma and am very sensitive to bleach and perfume so traveling is a challenge. My DH and I go to WDW every year and I also wonder will this be my last year? Disney is the only positive that keeps me going at times when my fibromyalgia and the Scleroderma starts to act up. Prayers are with you and please keep positive energy around you and stay away from negative. This is something I have learned over the years with this disease. If you have any questions feel free to ask me.

 

[bethd]

I was diagnoised with Sarcodosis in 1998 at the age of 38. I came down with a horrible cough was run down and just miserable. It took a long time for the diagnosis to be made as I had a chest Xray done at the start that was misread. Almost 3 months after the initial Xray a new Pulmonary Doctor was reviewing my chart/test results/xrays and noticed enlarged lymph nodes deep in my chest. I was sent ASAP to a CadioThorasic Surgeon. Without doing a biopsy there was no way to tell what we were dealing with. I had the biopsy done and it was finally confirmed I had Sarcoidosis. A few months on steriods the cough went away and I finally started to feel human again.

Fast forward to today 12 years later. I am 50 years old and have never had another flair up. I still have the enlarged lymph nodes (always will) and anytime I get a cold or any type illness it seems to center in my lungs.

I have chest xrays and blood work done at least 2x a year as a follow up. Besides that life is normal and Sarcoidosis has not made a difference.

My one piece of advice is to find a great Pulmonary Doctor who has worked with Sarcodosis or at least is very familar with it.

If you have any questions feel free to PM me.

Beth

 

[minniebeth]

bethd, sorry about your diagnosis and what you've dealt with~ thanks for sharing your story and encouraging words that life has been "normal" for you with minimal effects. I hope it stays like that for you always!

latexscooter, how are you doing? Did you have a good Dinsey trip?