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  • anyone else have these sarcoidosis symptoms

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    Old 01-24-2014, 04:53 PM   #1
    evera
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    Lightbulb anyone else have these sarcoidosis symptoms

    I am new to this site, I have been dx with sarc in my skin, fibro, cfs, ibs, depression, and migrains. I have also had 2 spontaneous pneumothorax's (collapsed lung) in the past. I have had chest x rays that are clear, frustrating because I have constant chest pain shortness of breath ect. Has anyone else had clear chest x rays but still had sarc in lungs? Also as of late my sinuses have been killing me pain pressure, green and bloody mucus, my eye sight seems worse increased eye gunk, floaters and I have been getting bumps on my gums and very dry mouth. I know these could all be sarc related does anyone else have these and been diagnosed with something and how did you get the diagnosis. I live in kansas and feel the docs here are not very competent when it comes to anything sarc related. Very frustrating 3 year battle so far with no positive results in any way. Would love any input.

     
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    Old 02-10-2014, 02:27 PM   #2
    IrishAD
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    Re: anyone else have these sarcoidosis symptoms

    Quote:
    Originally Posted by evera View Post
    I am new to this site, I have been dx with sarc in my skin, fibro, cfs, ibs, depression, and migrains. I have also had 2 spontaneous pneumothorax's (collapsed lung) in the past. I have had chest x rays that are clear, frustrating because I have constant chest pain shortness of breath ect. Has anyone else had clear chest x rays but still had sarc in lungs? Also as of late my sinuses have been killing me pain pressure, green and bloody mucus, my eye sight seems worse increased eye gunk, floaters and I have been getting bumps on my gums and very dry mouth. I know these could all be sarc related does anyone else have these and been diagnosed with something and how did you get the diagnosis. I live in kansas and feel the docs here are not very competent when it comes to anything sarc related. Very frustrating 3 year battle so far with no positive results in any way. Would love any input.
    Hi There!! How were you diagnosed? Biopsy? Have you seen an opthomologist for your eye issues? Are you on any medications? I have some of the issues you have, but not alot of those. Im just curious how they diagnosed you with Sarc if you have a clear chest xray, does that mean you have not had a bipsoy done? Could be something else.
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    Old 02-11-2014, 06:16 PM   #3
    evera
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    Re: anyone else have these sarcoidosis symptoms

    I had a biopsy I have lesions on tops of my feet and legs, I have had 2 lung collapses but a clear chest x ray. Not been to an eye doc yet need to do that and numerology for migraines that last for days and now I noticed I have a bump under my skin on my wrist it is hard feels like it is the bone. Not on any meds I have been through them all and no doc knows what to do with me. Frustrating lol.

     
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    Old 02-12-2014, 08:12 AM   #4
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    Re: anyone else have these sarcoidosis symptoms

    Quote:
    Originally Posted by evera View Post
    I had a biopsy I have lesions on tops of my feet and legs, I have had 2 lung collapses but a clear chest x ray. Not been to an eye doc yet need to do that and numerology for migraines that last for days and now I noticed I have a bump under my skin on my wrist it is hard feels like it is the bone. Not on any meds I have been through them all and no doc knows what to do with me. Frustrating lol.
    I was diagnosed becuase I had swollen lymphnodes in chest, biopsy proved to be sarc. I suggest you go see an eye doc as soon as possible. I was having some eye issues, tender eyes, headaches, floaters, some blurred vision, turned out my optic nerve was so swollen I would have been bline within a weekk, that in turn led to brain MRI where they found lesions, and then a spinal tap where they confirmed inflamation, therefore getting my diagnosis of nuerosarc. I'm on a combo of meds that work pretty well to mask the symptoms, and I feel SOOO much better. I still have headaches regularly, but not nearly as intense. I still see my nuero-opthomologist often, at first it was once a week, but since the medications have reduced the swelling, I see him less often. Where are you at? Are there any doctors in your area that have experience with sarc?
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    Old 10-04-2014, 09:35 PM   #5
    Prairie Fairie
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    Re: anyone else have these sarcoidosis symptoms

    I would normally have very little to say is this area of topics, but I think I just got christened after a bit of a scare this week with heart racing and pressure. I've had migraines for about the past month and I had kidney pain. The x-ray done at the hospital indicated possible shadow on my lung, but not worried about that right now. I also have had pains in my wrists (that I don't normally get) and general feeling of fatigue and malaise. They ran some tests last night and found I was rather low in potassium (so much so, they suspect that the cause of my major issues, which then leads me to conclude it's also caused the migraines this time around. I thought I must have hurt my neck, but apparently not. I've also had the fuzzy eyes, not so much floaters, but spots where I'm blinded very easily by light, but my eye sight is fine (if I don't have a migraine). I've also been getting bloody snot. My nose starts bleeding and I'm not - or wasn't prone to nose bleeds. It doesn't last long. But at first I think my nose is dripping, even if it's just one nostril.

    Have you had your potassium levels checked? That's what I'm really getting at.
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