Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Hi, I'm new here, and honestly, I'm not even sure that sarcoidosis is my problem, but it was brought up to me because of the symptoms I have been having and after doing some research, it seems to be the closest thing that covers what I have been feeling. I figured that maybe I could come here and learn more while my doctors are still trying to figure out what is wrong with me. Some of what I have been experiencing are headaches, painful ones and ones that just feel like constant pressure, enlarged glands, a " lumpy " feeling in my neck and when I swallow, numbness in parts of my leg, (one spot is next to a bump right below my knee that is dry and scaley), heart pallpatations, fatigue, on-and-off blurry vision and an sizeable increase in eye floaters, sleep problems.... the list goes on. I have seen my regular doc and a few specialist, and no one can agree. They have told me everything from Fibromyalgia to migraines to a viral infection and more. Then, I was pointed in this direction. I am going to ask my doc about this at my next follow up in a couple weeks, and I am hoping that maybe coming here will give me some answers. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Welcome, I hope you feel welcomed here, yes this sounds a lot like me and many others here. One thing I would mention is; you say you have swollen glands, they can do a biopsy of your enlarged gland. That is how I found out I had Sarcoidosis, I knew I had before I got sick, they were thinking lymphoma, and said oh it's just Sarcoidosis and shouldn't have any problems with it, only a very few do, so I am in the very few, like so many here. Hope this information is helpful, Marl a Hi, I'm new here, and honestly, I'm not even sure that sarcoidosis is my problem, but it was brought up to me because of the symptoms I have been having and after doing some research, it seems to be the closest thing that covers what I have been feeling. I figured that maybe I could come here and learn more while my doctors are still trying to figure out what is wrong with me. Some of what I have been experiencing are headaches, painful ones and ones that just feel like constant pressure, enlarged glands, a " lumpy " feeling in my neck and when I swallow, numbness in parts of my leg, (one spot is next to a bump right below my knee that is dry and scaley), heart pallpatations, fatigue, on-and-off blurry vision and an sizeable increase in eye floaters, sleep problems.... the list goes on. I have seen my regular doc and a few specialist, and no one can agree. They have told me everything from Fibromyalgia to migraines to a viral infection and more. Then, I was pointed in this direction. I am going to ask my doc about this at my next follow up in a couple weeks, and I am hoping that maybe coming here will give me some answers. Thank you -- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com 'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 I did the same thing as you did when they were trying to find out what was wrong with me. I did a lot of research on the internet. They ending up doing a biopsy on a lymph node in my neck and found out I had sarcoid. I also had the very same symptoms. having a biopsy can really tell them what is going on. Then try to find a specialist in sarcoidosis because a lot of the doctors are NOT up to date on treatments. Depending on where you live we can give you some names of good doctors who treat sarcoid patients. The vision problems, among the other symptoms, is a good clue it might be sarcoid. My eye doctor was a very big help to me at the beginning. Are you seeing a specialist for your eyes?...not a regular eye doc but a really good eye doctor. Hang in there, S. 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).Subject: Hi, I'm new hereTo: Neurosarcoidosis Date: Friday, June 6, 2008, 5:56 PM Hi, I'm new here, and honestly, I'm not even sure that sarcoidosis is my problem, but it was brought up to me because of the symptoms I have been having and after doing some research, it seems to be the closest thing that covers what I have been feeling. I figured that maybe I could come here and learn more while my doctors are still trying to figure out what is wrong with me. Some of what I have been experiencing are headaches, painful ones and ones that just feel like constant pressure, enlarged glands, a "lumpy" feeling in my neck and when I swallow, numbness in parts of my leg, (one spot is next to a bump right below my knee that is dry and scaley), heart pallpatations, fatigue, on-and-off blurry vision and an sizeable increase in eye floaters, sleep problems.... the list goes on. I have seen my regular doc and a few specialist, and no one can agree. They have told me everything from Fibromyalgia to migraines to a viral infection and more. Then, I was pointed in this direction. I am going to ask my doc about this at my next follow up in a couple weeks, and I am hoping that maybe coming here will give me some answers. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 HI darkwebweaver, Welcome to our group. my name is Helen and I am a new member also.Please insist that your doctor have bloodwork done for Sarcoidosis.See a regular eye doctor fofr your floaters.I had large floaters to appear while I was driving.I imediately went to my eye doctor and she sent me a eye specialist.I have sarcoidosis in both eyes,in my lungs,sarcoid arthiritis and was recently diagnosised neurology (white spots on the brain).The dry scalely appear to be part of sarcoid.I have one on my elbow and on on my knee that will not go away. Again welcome stay in touch and let us know your outcome if you choose to.darkwebweaver wrote: Hi, I'm new here, and honestly, I'm not even sure that sarcoidosis is my problem, but it was brought up to me because of the symptoms I have been having and after doing some research, it seems to be the closest thing that covers what I have been feeling. I figured that maybe I could come here and learn more while my doctors are still trying to figure out what is wrong with me. Some of what I have been experiencing are headaches, painful ones and ones that just feel like constant pressure, enlarged glands, a "lumpy" feeling in my neck and when I swallow, numbness in parts of my leg, (one spot is next to a bump right below my knee that is dry and scaley), heart pallpatations, fatigue, on-and-off blurry vision and an sizeable increase in eye floaters, sleep problems.... the list goes on. I have seen my regular doc and a few specialist, and no one can agree. They have told me everything from Fibromyalgia to migraines to a viral infection and more. Then, I was pointed in this direction. I am going to ask my doc about this at my next follow up in a couple weeks, and I am hoping that maybe coming here will give me some answers. Thank you :)HELEN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Thank you guys for the welcome. I'm glad I've found this group ... even if I don't end up having sarcoidosis, it's helpful to hear from people that deal with some of these symptoms. Right now the two things that are bothering me / worrying me the most are my eyes and my heart. My glands have been swollen off and on, in my neck and my armpits. No one has mentioned a biopsy to me yet, but I have been through that before...I had a lymph gland biopsy about 16 years ago for other problems, but that one came back clean. My eyes are driving me nuts right now, and they really have me worried because I am so afraid that I might loose my vision. I already have lost most of the hearing in one of my ears, so having anything go wrong with my senses sets me off. The thing is, I have been to my eye doc twice since all this has started going on, and he said my eyes themselves look good. My eye doctor is good, and he was pretty thorough with my eyes when I told him about all the problems I was having. He did a regular eye exam, plus some other field of visions tests and another one I can't remember - these were to also help rule out tumors and MS. Then he also did a test where they dilated my eyes and used very bright lights and mirrors and magnifiers to check my retina to make sure it wasn't detaching and causing my floaters. He said my retina looked real good, and so did what he say of my optic nerve; it was nice and flat (no bulging from pressure in my head). He said he was leaning towards thinking that my eye issues might be related to the headaches I've been having. He sent his full report to my neurologist. As for my heart, I have been having episode where I can hear my heartbeat a lot. I know it is normal to have that happen once in a while, but since I have been having these other symptoms, it has been happening a LOT. It started with me just hearing it / being aware of it a lot, then it would feel like it was racing and I would get short of breath. My doc put me on a 30 day Lifewatch monitor, and the results came back that I had a benign sinus arrhythmia, which they said is a common arrhythmia and nothing I should worry about. But.... what would cause it to start out of nowhere like this? There are times now where it feels like my heart beats so hard, I can see it - my chest shakes. My neurologist has sent me for three MRIs so far - brain, cervical spine, and lumbar spine. The spine ones were to see if anything was pinched and causing the numb spots in my leg and/or my headaches. The brain one came back clean - no MS, no tumors. He said my brain looked healthy. They only thing they found on the other two were a couple of disc with very small bulges, one in the neck, one the lower back, but they aren't pinching anything and he said they are very minor. At the beginning of this, my regular doc also sent me for blood tests, including CBC, thyroid and I believe liver function. All came back within normal range. Sorry this is so long... I guess I started rambling and couldn't stop > From: darkwebweaver & lt;raven-storm@... & gt;> Subject: Hi, I'm new here> To: Neurosarcoidosis > Date: Friday, June 6, 2008, 5:56 PM> > > > > > > > > > > > Hi, I'm new here, and honestly, I'm not even sure that sarcoidosis is > > my problem, but it was brought up to me because of the symptoms I have > > been having and after doing some research, it seems to be the closest > > thing that covers what I have been feeling. I figured that maybe I > > could come here and learn more while my doctors are still trying to > > figure out what is wrong with me. > > > > Some of what I have been experiencing are headaches, painful ones and > > ones that just feel like constant pressure, enlarged glands, a "lumpy" > > feeling in my neck and when I swallow, numbness in parts of my leg, > > (one spot is next to a bump right below my knee that is dry and > > scaley), heart pallpatations, fatigue, on-and-off blurry vision and an > > sizeable increase in eye floaters, sleep problems.... the list goes > > on. I have seen my regular doc and a few specialist, and no one can > > agree. They have told me everything from Fibromyalgia to migraines to > > a viral infection and more. Then, I was pointed in this direction. I > > am going to ask my doc about this at my next follow up in a couple > > weeks, and I am hoping that maybe coming here will give me some > > answers. Thank you > Quote Link to comment Share on other sites More sharing options...
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