RE : New to this

[Guest guest]

Hi Dakota,

I am Shauna. I was diagnosed with Neurosarcoidosis at 25 in 2003 and I can totally relate to your story. I wasn't sick at all before I sudden came down with different symptoms. My first were extreme fatigue, then diagnosed with anemia,given iron pills until the major things started happening. I developed facial pasley (bell's palsy, drooping of my face on one side). Headaches were always and hard to control. Then I developed vision problems and Painful purple skin rash on legs know as eythema nodosum. I was unable to see anything from the uveitis (inflammation in the eyes) All I could see was little floaters and specks of light. I thought I would be blind forever but I am not.

I was given Pred Forte drops for my eyes and a round of steriods and that seemed to control and help my symptoms. All my symptoms seem to be quickly resolved with the prednisone thank God. This condition can be very serious so my advice to you is to learn all of the possible symptoms and those are easily found on many medical websites. My mom is nurse so she printed info on Sarcoidosis for me while I was really sick. It listed all the symptoms and if I didn't remember or recognize one I would mention to her that I was experiencing this or that and she would remind me that that was a symptom and maybe I should get it checked out. I would also advise you to not wait until something gets too bad mainly your eyes and lungs. You can suffer permanent damage in the eyes, bleeding, or too much pressure behind the eye etc. which can lead to blindness.

I didn't have any symptoms from my lungs when I first was diagnose although my chest xrays did show some scarring of the lungs. So I would keep a check out for that. In 2003 I didn't have any symptoms but in 2008 I did begin to experience a dry cough with is a symptom and at first I didn't realize what it was but it wasn't going away. My mom said you have had that cough for a minute and I thought about and I had been expereincing that nagging cough for a few months. I went to my pulumnary doctor and sure enough it was the sarcoids. It has cleared up now and my coughing is gone with a few months of steriods so as I said " If you notice some sort of symptom that doesn't seem to go in about two weeks I would get it checked out."

I would print out a list of symptoms and look at it or have someone go over it with you often so you learn the symptoms and then when or if you come across something thats not going away you will know that that is a possible symptom and to get it checked.

Sorry about the diagnosis and I hope this helped you some. It is very devastating to be diagnosed with something so debilitating right in your prime. But do what you can and don't worry about keeping with the rest of your peers. Make sure you take care of yourself first and in between the good and bad times enjoy yourself if you can. Everyone will not understand what you are going through but that is ok. You will learn what works best for you.

Shauna in Atlanta

Sorry I wrote a book. If you have anymore questions please ask. I sure do. lol