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Help with Diagnosis

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ray1937
ray1937

Hi there. First post and i'm stressed and really confused and not sure what to think anymore. The short of this is that a dermatologist identified skin lesions in May 2017 that i was suffering from as "Cutaneous Sarcoid."  These lesions were all over may back, and arms, and back of neck. They were these giant welt looking things.

The same week i got that news from the Dr of "Cutaneous Sarcoid" I started to develop vision problems at various points in my day. First, if you were to stare at a light bulb and then look away that blurriness you experience i get that often out of no where. And that strain you feel when you where a kid and go cross-eyed, i get that whenever i track moving objects. Fine looking at stationary objects. I also have these tiny bumps/cysts on my interior eyelids as if i had an eyelash in there, more on left eye. 

Most recently, in the past 4 weeks, some balance problems have crept into my day. My head feels like's it's in a fog all the time, no pain, but zero focus or clarify. 

I took some prescribed antibiotics that cleared up the Cutaneous Sarcoid rather quickly, but the other symptoms persisted.

My family dermatologist and Dr do not believe any of these symptoms are sarcoidosis which has left very nervous about what's going on in my head,.

I had a CT scan last week and i'm just waiting on results.

Can anyone relate these symptoms? 

0 likes, 2 replies

2 Replies

  • Thesufferer
    Thesufferer ray1937

    Posted

    Sorry that you are going through this. This can be a horrible disease for some. As you might have already read this illness can affect the eyes and from the symptoms you mentioned it might be in your eyes. You need to see an ophthalmologist asap to see if it's in your eyes or not and to prescribe the suitable treatment.

    It breaks my heart every time I read about another new patient with this illness.

    I wish you the best.

  • AmandaPC
    AmandaPC ray1937

    Posted

    Hi Ray,

    Just out interest are you on any kind of medication? 

    The reason I ask is I am on steroids and have been for two years because of sarcoidosis on my spleen, liver, lungs and leg. Being on these I have had nearly every side effect linked with them, my eyesight has weakened alot I can get hazy vision and tired eyes, I get fog brain, I get dizzy, I get tired, I get cranky, I had hair loss, I put on weight, my face stretched and the vains broke in my cheeks, the lumps under your eyelids I haven't heard of, but I do know that sarcoidosis can travel to the eyes,  and if there is any glaucoma in your family it's best to get them examined straight away.

    I had a ct scan too because of bad headaches but they were due to a drop in mg of steroids that was causing them.

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