Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Terri, I am sorry to hear you are getting worse, but seems to be the way with this disease, I hope you get some postive answers soon. Take care of yourself, good to hear from you. God Bless, Marla Re: Need info Kim,It has been awhile since I have been on. Thanks for your support and information. I am slowly but surely getting sicker. Constant facial pain and hoarseness, fatigue, headaches. I am having to fight witht he docs - they seem to think that all of this is normal. We have the worst docs in the world. I am getting ready to have to have some urinary testing - they think it is due to neurological problems - what? He He. I am going to start pushing to go back to Hopkins soon if I don't start getting any straight answers.I hope this finds you well and when I get access to a computer I will write again. Thanks again.Terri> Dear Terri> > I am terribly sorry that you are having these problems and such pain. I > suffered with the worst facial pain a person could imagine on and off for many > years, begin in my early twenties before I was diagnosed. This was diagnosed > as TMJ at one point, then I was told that wasn't it, that they didnt know > what it was, in Kuwait, they actually pulled a perfectly good tooth to try to > relieve it at one point. It was the worst pain I have ever ever experienced. > The pain extended from my head, through my ear and jaw, down my neck , > through my face. my husband literally carried me screaming into the ER many times > with this pain. It would strike suddenly when it came on. I would have the > attacks in clusters over periods of weeks at a time. After my dx -my > neurologist hypothosized that this pain had been trigiminal neurolgia all along, > we will never know for sure.> > With my initial "bad" flare of NS I had bells palsy. It went away with my > first round of treatment with prednisone and has never returned.> > My headaches are also focused at the left base of my head , from there to > the back of my left ear - the lower part of my head. They used to be and can > be the entire left side of my head. But when I have the severe headaches that > seem to have a focal point it is this area that bothers me most. It is very > painful.> > I hope you get some answers and some help soon, I wish I was full of more > informative details and insights. Sometiems you wish you had an M.D. just so > you could be more helpful and understand the processes that are going on.> Take care,> Kim> NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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...
Guest guest Posted July 6, 2005 Report Share Posted July 6, 2005 Terri, I am sorry to hear you are getting worse, but seems to be the way with this disease, I hope you get some postive answers soon. Take care of yourself, good to hear from you. God Bless, Marla Re: Need info Kim,It has been awhile since I have been on. Thanks for your support and information. I am slowly but surely getting sicker. Constant facial pain and hoarseness, fatigue, headaches. I am having to fight witht he docs - they seem to think that all of this is normal. We have the worst docs in the world. I am getting ready to have to have some urinary testing - they think it is due to neurological problems - what? He He. I am going to start pushing to go back to Hopkins soon if I don't start getting any straight answers.I hope this finds you well and when I get access to a computer I will write again. Thanks again.Terri> Dear Terri> > I am terribly sorry that you are having these problems and such pain. I > suffered with the worst facial pain a person could imagine on and off for many > years, begin in my early twenties before I was diagnosed. This was diagnosed > as TMJ at one point, then I was told that wasn't it, that they didnt know > what it was, in Kuwait, they actually pulled a perfectly good tooth to try to > relieve it at one point. It was the worst pain I have ever ever experienced. > The pain extended from my head, through my ear and jaw, down my neck , > through my face. my husband literally carried me screaming into the ER many times > with this pain. It would strike suddenly when it came on. I would have the > attacks in clusters over periods of weeks at a time. After my dx -my > neurologist hypothosized that this pain had been trigiminal neurolgia all along, > we will never know for sure.> > With my initial "bad" flare of NS I had bells palsy. It went away with my > first round of treatment with prednisone and has never returned.> > My headaches are also focused at the left base of my head , from there to > the back of my left ear - the lower part of my head. They used to be and can > be the entire left side of my head. But when I have the severe headaches that > seem to have a focal point it is this area that bothers me most. It is very > painful.> > I hope you get some answers and some help soon, I wish I was full of more > informative details and insights. Sometiems you wish you had an M.D. just so > you could be more helpful and understand the processes that are going on.> Take care,> Kim> NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers 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...
Guest guest Posted July 7, 2005 Report Share Posted July 7, 2005 Terri I am sorry that you are getting worse and having troubles with the Drs., as Marla said it all does seem to be the way of things unfortunately. Hopefully you will "have your day soon" and your Drs will see the "sarcoid light of day"! Oh wouldn't that just be something to celebrate? Maybe going back to Hopkins, where there are some specialists is a good idea. I wish you luck. Take care, Kim NS Moderator Quote Link to comment Share on other sites More sharing options...
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