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Sarcoidosis Message Board

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    Old 10-26-2015, 10:39 AM   #1
    topsy123
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    Join Date: May 2006
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    Hi everyone. Got a few questions and I will make it as brief as I can. I do not claim to have sarcoidosis but I am trying to piece together what is going on with my health. I have a brain stem lesion, it was found because I was having what appeared to be neurological symptoms. I lost the ability to walk well and struggled with balance issues for a while. A lot more symptoms but after many years of no answers and being told it was most likely in my head I gave up. I had a left sided palsy when I collapsed and my troubles really all started with this. Over the years, I would say the neurological symptoms are there but have stabilised. I have chronic fatigue, so much pain in my hips and joints, I have irritated eyes, they become inflamed and sore. I have had erythema nodosum on my legs and my hands swell up. I get brain fog, and so the list goes on. I had a few blood tests done. They said the anti gliaden antibodies were normal, but the serum angiotensin converting enzyme is elevated. It says it came in at 56. I have NO idea what this means. Meanwhile, they have tested me for MS, Lupus, and other stuff. My vitamin D levels have just come back very very low, so I am now being prescribed for that. I now have a frozen shoulder, or at least they think it is, I'm due to be scanned for it in the next week. My lungs are fine, but I get asthma. Then there's the OMG I feel like I'm getting no air, which isn't asthma related. It's horrible and feels like your gonna go blue. I suffer from acne in my neck and small red spots all over my body. They are increasing in volume, but they are tiny, some bigger than others. Yes there are other symptoms I get to, but I would be really grateful of some help here, and advice re the normal rate for the test I had. The neuro said yes it's elevated but he said he doesn't know why, so it's not worth worrying about...Thanks guys...

     
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