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the mystery disease
It's symptoms are no mystery
to get through them no breeze
I have swollen glands, swollen feet,
swollen hands
every joint in my body aches
there's no cure that's the breaks
I have a bad cough, nothing comes up it's dry
how'd I get this disease? no one knows why
I get short of breath
can't get enough rest
for I'm fatigued all the time
and sometimes do whine
The Prednisone made me very depressed
I had to see a shrink and I'm very distressed
I got the ol' moon face and widows hump
40 pound weight gain and the skin bumps
There is one more thing I'd like to say
A cure is what I ask from God each day when I pray
"1997"
Lymph Glands (65%), Eyes (20%), Bones & Joints (20%), Central Nervous
System (1-15%)other organs (1-15%). There is no known cause or no known
cure.
SYMPTOMS:
weakness,and/or fatigue, blurred vision, sore red eyes, skin rash, red
tender skin bumps,joint and or muscle pain, and joint swelling.
TREATMENT:
corticosteroids are normally used. Anti-inflammatory drugs
help reduce the pain and swelling. Neither drug is a cure.
It took some years to finally come up with a diagnosis for the way I was feeling.I went to my family doctor several times with complaints about my breathing. I had all the symptoms, but the puzzle was never put together. In 1993 I had a skin bump taken out of my forearm. It came back as an infectious gramulomas type of thing. The doctor didn't seem too concerned. A few months later I was at work and my right side started to hurt really bad for no apparent reason. I thought maybe it was an appendicitis. I work at the hosptial and the pain was so bad I decided to go to the emergency room. I was surprised when the doctor wanted to xray my lungs. Back from the xrays, the doctor came in and said it looks like I had pneumonia and put me on antibiotics and bedrest. My family doctor followed up with xrays and told me that I also had a scar tissue on my right lung and that it wasn't growing and that it wasn't nothing to worry about.I still didn't feel any better. Then over the next few years I went to him with big swollen glands in my neck, he said he thought I was getting over mono. I also saw him for joint and body pain, he put my on Quinine. If you have Sarcoidosis I am sure that you are seeing quite a few symptoms here by now. The doctor never did. 4 years after that 1st emergency room visit I once again presented. This time I woke up about 5 a.m. and told my husband I couldn't breathe and could he please take me to the hospital. The doctor came in after xray and said you have been here before for this. I said I came in for pneumonia. He said he didn't know what I had but it certainly was not pneumonia. Infact, the xray was read and it stated that it appear to be a young patient with lymphoma.I was given the only Pulmonologist in town's card. I called and of course it took a couple of weeks to get in, but when I got there the ball started rolling. I saw him on a Thursday, by Monday I was having a bronchoscopy lung biopsy. The doctor was almost certain as to what I had at that time. He said gramulomas was coming back up in the wash fluids. He said that had never happened before. The biopsy confirm it and by this time both of my lungs are severely damaged. The right is worse and gives me a lot of pain. Mine has gone into stage 3 being that it has gone into Pulmonary Fibrosis. The Prednisone hated me and after my doctor thought it was safe to get off of it I lost 15% of my lung volume. I then went on Imuran. I like this drug much better. You have to have a CBC (complete blood count) every 2 weeks though, because it can suppress your bone marrow. After 6 months of Imuran, my white blood count kept dropping below normal. My doctor said no more. I have been drug free for the past 6 months and as of yesterday's chest xray my lungs remain abnormal but stable. I still have the joint pain and fevers of unknown origin, especially if I try to push it beyond my limits. The right side lung pain is still present. Still some shortness of breath, but I am happy that is remains in remission. I am truly blessed for the loving family that I have and for their support and great friends who stuck by me in this. I try to live one day at a time and realize that there will be bad days ahead of me and that I can handle anything that comes along. I created this homepage as a way for sharing what information that I have of this disease and I hope that it may help someone else. Support is out there!
(written September 1999)
Condition Updates.....
October of 1999- Stomach started hurting and I felt my liver was enlarged. Cat scan showed enlarged liver, spleen, right kidney, abnormal adenopathy. CT guided needle biopsy says all compatible with Sarcoid. Ace level is 280. Being treated with 100 mg. Imuran.
January 2000- Cat scan. No improvement no progession. Ace level 203. Still on 100 mg Imuran.
May 2000- Lung xrays are abnormal, but stable. Doctors detects a heart murmur which has been heard all my life. I have been told it is functional and something I never out-grew as a child. My doctor schedules a echo to see if this is still the case. Ace level dropped to 197. Going to reduce Imuran to 75 mg. Doctor said he was taking this very slowly, due to the fact I can't seem to stay in remission for very long. Still big bulky Lymph nodes felt. PFT's continue to get lower. I have strange chest pain after coming off my c-pap in the morning. Could just be trapped air.
September 2000- I started feeling dizzy and drinking a lot and getting numbness in one of my hands. Checked my blood sugar and it was 309. Was diagnoised with type ll Diabetes. I started oral meds and now have to learn to live with 2 awful diseases.
October 2000- PFT's still going down. Diffusion at 61%. Ace level 167. Chest xray no changes. Doctor hears a few crackles in my lungs. Doing well with keeping my blood sugars normal. Lately have been walking 2 miles a day. I feel like I have more energy. A repeated cat-scan shows no change in the past 9 months as to enlarged liver, spleen, adenopathy etc.To remain on 75 mg. of Imuran. All other labs look good. December 2000- I felt I was doing fairly well, when I went to bed one night with chest pain that radiated to the back and it didn't go away. After 4 days of that I went to the doctor. Chest xray shows no change, but Imuran kicked back up to 100 mg. due to the symptoms. Was given Lortab for pain, but it makes me feel yucky. Seeing new pulmonologist, he views all my xrays and says it's a shame family doctor didn't catch this in 1993 when the disease was only in stage 1. He also shows me what appears as gramulomas in my spleen on my most recent cat-scan.Joint pain and fevers have returned. I take a very hot bath before I go to bed because I ache so bad. It helps.
April 2003-I apoligize to those who visit my page often for not updating for a long time. Several of you have wrote and asked me to update. My mom has under gone a Stem cell transplants for Lymphoma cancer and the past 3 years have been touch and go. I am glad to report she is now cancer free. The past few years the Sarcoid persists and the symptoms seem worse due to the stress I have been under regarding everything that has been going on with my mom. I am now on 150 mg. of Imuran coming down from 175 mg. My doctor said this is as far as he will push the Imuran.Methotrexate is next, but I don't want the side affects. Recently found out the Sarcoid has gone into Parotid glands in my face, making the glands look real abnormal on an MRI. It has formed a change of lymph nodes. I was called by a E.N.T. to come in and he told me the only way to get rid of the problem would be to cut the sides of my face and remove the glands. I said "NO THANKS, they don't hurt so leave them". I have disabled from work and was granted social security my first time in front of the judge. I think the letter my doctor wrote saying if the disease was to go into any more of my organs it could cause my death helped with that, I know when I read it, it startled me. My doctor told me not so long ago, my body was trying to destroy itself.My joints still ache, have occasional fevers usually at night,Ace levels still high, I have lost about 10% more of my lung volume, lungs feel tight, and liver pain still exist.On a good note my xrays are unchanged (Stable is good with Sarcoid), blood gases are normal, all other labs look good, diabetes under control and HgbA1C reading have been in non-diabetic numbers. I was a Diet Technician for 9 1/2 yrs. so I better know how to take care of that, I became a grandma for the 1st time to the cutest baby boy May 9th, 2002 and in February celebrated my 25th wedding anniversary in Oahu to the most wonderful husband and felt pretty good for those 10 days.Still takin' it one day at a time, and hoping for a cure.
May 18, 2005 - Past few months feeling more symptomatic. I had a Dr.appt. for the 26th of May but felt I couldn't make it til then. Saw the dr. today and he also feels that I have fell out of remission. I go for a chest cat-scan in 2 days, had 13 diffrent labs drawn today, some I have never heard of and I had been in the medical field myself for 10 years. I go back in for more labs on Monday and then back for results on Wednesday. So I have a busy week ahead of me. My symptoms are short of breath, chest pain that radiates to the back, night fevers, night sweats, blurred vision, joint swelling, edema. This actually feels like it did when I was diagnoised. My PFT's from last week show a 10% dropped across the board. Lung xray didn't look unchanged, but the dr. feels that Sarcoid patient xrays sometimes lie, that is why I am having the catscan. It has been awhile since this has flared up this bad. Will post my test results when I get them.
MAY 2005 UPDATE & RESULTS- Well as I expected from the way I was feeling the Sarcoid has once again reared it ugly head. Imuran kicked up to 200 mg. The catscan showed grounded glass which in doctor's terms meant shiney new active Sarcoid. Ace level was also elevated. It was also discovered that I have some Emphysema in the corners of both lungs. I see the dr. again in June to see if I am making any progress. Methatrexate was mentioned again. Hope to stay on the Imuran and pray the higher dose help. My doctor felt it would take some time to get better.
APRIL 2006 UPDATE- A year has come and gone on higher doses of Imuran and my PFT's continued to drop, my ACE Level went higher, my Liver and Spleen enlarged so much causing so much trouble. I was in the hospital the first week of Feb. This past Tuesday my Pulmonolgist said the Imuran is no longer working. I didn't tolerate Steroids the first time around, but we are running out of options so I decided to try again. Also put on Methotrexate. I am sadden because of the steroid use I will now have to take Insulin shots when I did so well on oral meds, but the steroids have my sugars sky high right now. Will continue to update and takin' it one day at a time!.
APRIL 2007 Update- Another year, this past year has been the hardest year of all. February was the 10th anniversary of the diganosis of this diease. Since my last update a year ago I developed a GI bleed due to the steroids and landed in the hospital for the 2nd time. I was told to stop the steroids cold turkey until my belly healed. That was the worst thing ever. Could not even lift my head from the pillow for 3 weeks. Joints burned like no other. I couldn't even roll up on my sides in bed. I went a half of year and had to start them again along with 20 mg of Methotrexate. All i can say is I HATE steroids and they hate me side affect wise, but on a Pulmonary view I am responding to them and even have had some improvement.I started back up on a low dose, but still developed cushing syndrome, Moon face, widow hump, swelling, joint pain, you name it I got it although no weight gain on the steroids this time, infact I have lost. Go figure that! So I keep plowing along. I told my doctor that it is awful when the treatment makes you feel worse than the diease and the meds. are not going to cure me. I will continue to do as he says and hopefully soon we get this bugger in remission!
May 2008 Another year, same boat. Steroids were dropped to 4 mg every other day. I was loving life again. The side affect went away....then I started getting the distended stomach pain and coughing a lot more. A cat scan showed a 5 % increase as did my current PFT and ACE level back up. The doctor put me on 4 mg every other day with 2 mg the days I don't take 4. He thought I wouldn't have a much side affects. Well I have big swollen glands under the neck so I think the moon face is coming. Pretty sore to the touch. I was hoping we could wait til fall. I had respritory infections this past Dec, and again in Jan, Feb, and March. Seem to be staying sicker in the colder weather.
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This page created, monitored, and updated by Laurie McGee. This page should not be used to make a diagnosis of Sarcoidosis. It solely deals with my personal experience
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