Guest guest Posted July 9, 2010 Report Share Posted July 9, 2010 I'm late in returning emails, One of the things I can totally relate to is the burning skin, sometimes I just can't stand it. Once I had a whole body rash, and it felt like someone lite a match and threw it in my body. I have skin lesions all over, and they burn like crazy. Head pain, and inner burning going on too. I found Lyrica has helped me the most for sure, it's for Diabetic neuropathy, so it works on nerve pain, you might suggest this to your doctor. We welcome your questions, and hope you find some answers and relief, sorry you have to even think about dealing with Sarcoidosis, but there's always hope. hang in there. Marla I have been experiencing headaches, muscle pain, pressure in my chest...etc for about six months now. I have been kicked around from doctor to doctor and finally a neurologist suggested sarcoidosis. Nothing is in my lungs....i have symptoms that point to possibly my liver like my nails rotting....i go to the eye doctor today....i am in constant pain. I can't eat anything without having a reaction of some sort. My skin is on fire...however...no fever. My head is about to explode. I just don't know what the hell is going on. I've read about sarcoidosis and feel my symptoms match. My a c e ( or whtever that is)levels in my blood were like 75 yet they have not found any deposits. Could it be sarcoidosis...or neurosarcoidosis...? I don't know. I do know I need to talk to people who are going through this sort of stuff!!! Any suggestions on future tests...maybe something that can alleviate some of the pain...please talk to me!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2010 Report Share Posted July 9, 2010 Among the doctors you have seen, how about a rheumatologist? That may be the best bet to try to sort out the symptoms & see what ties together. The ACE indicates some type of inflammation, but isn't specific to sarc. If they can find any kind of lesions to biopsy--skin, lymph node maybe--that might (might, because if they just barely miss a granuloma, it would be negative) help. Are you near a major teaching center? Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 > To: Neurosarcoidosis > Date: Tue, 6 Jul 2010 15:34:31 +0000> Subject: New to this!?> > I have been experiencing headaches, muscle pain, pressure in my chest...etc for about six months now. I have been kicked around from doctor to doctor and finally a neurologist suggested sarcoidosis. Nothing is in my lungs....i have symptoms that point to possibly my liver like my nails rotting....i go to the eye doctor today....i am in constant pain. I can't eat anything without having a reaction of some sort. My skin is on fire...however...no fever. My head is about to explode. I just don't know what the hell is going on. I've read about sarcoidosis and feel my symptoms match. My a c e ( or whtever that is)levels in my blood were like 75 yet they have not found any deposits. Could it be sarcoidosis...or neurosarcoidosis...? I don't know. I do know I need to talk to people who are going through this sort of stuff!!! Any suggestions on future tests...maybe something that can alleviate some of the pain...please talk to me!!!!> > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
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