Re: Eyes?

[Guest guest]

Welcome Judy, I can't answer all your answers but if you scroll to the bottom the email, you can go to Messages and Links and find a lot of information on Sarcoid.   As for personally, When I'm tired I can have trouble with blurry eyes, but not all the time.  I don't have it in my bones that I know of, all though I have a lot of deep pain, they say is nerve pain, but some of joints swell and are very painful, so I don't know.  No broken bones.

 I cannot go out in the sunlight, cloudy either, I feel like I just got the flu, with nausea, vomiting and sever body aches.  My skin will turn red too, and burn from the inside out. I'm sorry you've had this so long without a diagnosis, I know that is hard, that is what happened to my Aunt, whom just passed at 81, but she's been sick forever. 

Are  you on any medication for this??  I take several.  Plaqiunal, Methotrexate, and Remicade every 5 weeks,  of which I need to run off and get ready to go to, and I look forward to the Remicade.  This meds help me a lot.  I have NeuroSarc which means I have it in the brain and spine, and nerves though out the body, it is difficult for me to walk. 

There are many here with different types of Symptoms, and I'm sure you will hear from some of them. Because we are all sick here, it sometimes takes a while before you hear, but like I said check out the Messages, and links below. 

Blessings, Marla

 

I have a couple of questions.  I am currently going through the diagnosis process even though I have been sick over 25 years with this. I am now 54 years old.

#1.  At times, I can see so-so, and other times everything is too blurry to see anything, except colors.  With medication, can this get better? I can no longer read and my eyes always hurt and are dry.   

#2. Could someone tell me something about bone sarcoidosis.  The bones in my feet and lower legs are breaking without even falling or bumping them.  Does this ever get better?   

#3.  I am in extreme pain due to the swelling in my parotid glands.  How often does this affect people?  For over 2 years, I have been looking like a chipmunk. I've also had to have another tooth pulled, due to abcess.  

#4.  I get very sick being outside on a cloudy day for even 15 minutes.  When I go inside, it feels like the inisides of my eyes feel sunburnt and my skin turns bright red.  I also have a temperature regulation problem and I am always hot, and then skin turns bright red.  Is this common?  

#5.  I have been on disability for 20 years and in Dec., Social Security decided I am not disabled and I have been committing fraud, because the Dr. reports vary so much.  The diagnosis should help in my case, I hope?  Is sarcoidosis considered a disabling condition?   

 

It seems that almost every organ is already affected!  During this whole time, all of the Drs. would say that there is something wrong with me, but they didn't know what, so just told me that I had a lot of medical problems.  Its so nice to be able to hope for a diagnosis!

Thank you for your help!  I just joined today and this all makes me very worried!  Judy