Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Hello My sarc came on real quick like. In Oct. and Nov. Of 05 I started getting dizzy all the time. Falling down at work and losing myself in public. I was diagnosed with sinus infection and other type of afflictions. Finally in Feb. of 06 my neuro suggested, no ordered me to the University Hospital in Madison, Wisconsin. I was in there for a month while the doctors tried to figure out what on earth was wrong. All this time I was getting worse. I could only move my head back and forth. They put the NS label on me and sent me to a nursing home. I felt at that time it was to die, and I didn't mind. This ol gal has a stubborn streak and when my wants were being ignored I decided to take control of my life again. I was in that Nursing Home, where by the way I used to work, for six months. I chose to go home and here I am still. I can now walk, with walker. I drive and do all my own cares and things I want to do. I get knocked down but I get up again, nobody gonna keep be down. That song turned into my motto. lol I too felt alone until I found this wonderful group. To all There is hope, maybe not the kind we all want but something. Don't lose your hope and courage. Keep on keeping on. There is life after Sarc. Wishing you all a wonderful life, an very Happy Thanksgiving and a peace knowing you are not alone with God. And this group. Jackie Re: alone > " djonesdak " > > First let say you are not alone I also have Neurosarcoidosis and have been > thru the mis-diagnoses in fact I was told and treated for Vascular > Migraine headaches.In fact I was first diagnosed with these headaches at > approx 3 or 4 years of age. During my teenage years was the worst time for > me I missed a lot of high school.But from 18 to about 20 they tapered off > and disappeared. Now in Apr May of 2008 I was Hospitalized with extreme > headaches. And for approx 6 weeks they tried to determine what I had a > real scary time for me. For they threw around Cancer, MS, TB, Lupus and a > whole range of scary ones. And when I went in to the hospital I though the > headaches had returned. Well it came down to Neurosarcoidosis and when > they explained it to me it did not seem that scary. Then it was thought I > was in remission as of Aug 2008. So I started working out again went back > to work. I thought I was getting health again. I was even working 12 hours > a day 6 day a week. I was biking 15 miles to > work and Home I went back on all my supplements. I thought heck I got this > licked. Then I ended up laying on the floor of a friends Apartment unable > to breath or move (That was about Nov 2008). I had returned the > Neurosarcoidosis and as I keep learning about this I have learned that I > was supercharging my immune system and there in fact I supercharged the > sarcoidosis. At this time I am following what my doctors tell me to do and > I am finding out more and more about this I wonder if I might have had > this for a longer point of time then we think. > > I tell you all of this to let you know you are not alone. I know we are > rare in sarcoidosis but we are here. And we do understand. So please we > listen and do please do not feel alone. I know those feelings. I have > recently started going to a Sarcoidosis support group meeting we have here > in North Texas. I would recommended that or if not in your are please use > this site the people and moderators here are beautiful people with large > hearts and a large knowledge base. So for my part I say feel free to come > here and share your feelings we will listen and and respond. > > You are not alone. > > Greg aka Krumdawg > > >> >> It has been a long road for me. When I was young I was diagnosed with >> many different but Wong mental D/o I spent a lot of time in the hospitals >> for them. I know when I was a kid the doctors were guessing. As I got >> older the symptoms grew but were unexplained. Doctors were then leaning >> to the suto side of things then I stared with the seizures. It took an >> intense year of seizures and the very large brain lesions to finally come >> up with Neurosarcoidosis. The time that has passed I feel has hampered my >> life I feel different even different from the rest of those who suffer >> from this I was told I was apart of the 5% that get sarcoid apart of the >> 1% that get the neurosarcoidosis and .1% that only get neurosarcoid. I >> feel alone because of this no one can relate I'm in remission now but I >> know it will strike again worse than before it is how the history of time >> has always been. I just need to share this it has been wrapped up in me >> haunting me angering me, thanks for listening. >> > > > > > ------------------------------------ > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... > > 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...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 I went for years with the wrong diagnoses. I now can go as far back as 15. I felt bad that whole year. My mother passed it off as an emotional teenager. Then as the years passed I would have flare ups, that would last for weeks at a time. Finally in May 2008 I was diagnosed with Sarcoidosis and neuro-sarc.I haven't responded to any medicines yet. I know they will kick in one day. I know that God is in control. Hang in there you are not alone. We re here for you. Feel free to e=mail me anytime. Alice To: Neurosarcoidosis Sent: Tue, November 24, 2009 4:06:09 PMSubject: Re: Re: alone HelloMy sarc came on real quick like. In Oct. and Nov. Of 05 I started getting dizzy all the time. Falling down at work and losing myself in public. I was diagnosed with sinus infection and other type of afflictions. Finally in Feb. of 06 my neuro suggested, no ordered me to the University Hospital in Madison, Wisconsin. I was in there for a month while the doctors tried to figure out what on earth was wrong. All this time I was getting worse. I could only move my head back and forth. They put the NS label on me and sent me to a nursing home. I felt at that time it was to die, and I didn't mind.This ol gal has a stubborn streak and when my wants were being ignored I decided to take control of my life again. I was in that Nursing Home, where by the way I used to work, for six months. I chose to go home and here I am still.I can now walk, with walker. I drive and do all my own cares and things I want to do.I get knocked down but I get up again, nobody gonna keep be down. That song turned into my motto. lolI too felt alone until I found this wonderful group.To all There is hope, maybe not the kind we all want but something. Don't lose your hope and courage. Keep on keeping on. There is life after Sarc.Wishing you all a wonderful life, an very Happy Thanksgiving and a peace knowing you are not alone with God. And this group.Jackie Re: alone> "djonesdak">> First let say you are not alone I also have Neurosarcoidosis and have been > thru the mis-diagnoses in fact I was told and treated for Vascular > Migraine headaches.In fact I was first diagnosed with these headaches at > approx 3 or 4 years of age. During my teenage years was the worst time for > me I missed a lot of high school.But from 18 to about 20 they tapered off > and disappeared. Now in Apr May of 2008 I was Hospitalized with extreme > headaches. And for approx 6 weeks they tried to determine what I had a > real scary time for me. For they threw around Cancer, MS, TB, Lupus and a > whole range of scary ones. And when I went in to the hospital I though the > headaches had returned. Well it came down to Neurosarcoidosis and when > they explained it to me it did not seem that scary. Then it was thought I > was in remission as of Aug 2008. So I started working out again went back > to work. I thought I was getting health again. I was even working 12 hours > a day 6 day a week. I was biking 15 miles to> work and Home I went back on all my supplements. I thought heck I got this > licked. Then I ended up laying on the floor of a friends Apartment unable > to breath or move (That was about Nov 2008). I had returned the > Neurosarcoidosis and as I keep learning about this I have learned that I > was supercharging my immune system and there in fact I supercharged the > sarcoidosis. At this time I am following what my doctors tell me to do and > I am finding out more and more about this I wonder if I might have had > this for a longer point of time then we think.>> I tell you all of this to let you know you are not alone. I know we are > rare in sarcoidosis but we are here. And we do understand. So please we > listen and do please do not feel alone. I know those feelings. I have > recently started going to a Sarcoidosis support group meeting we have here > in North Texas. I would recommended that or if not in your are please use > this site the people and moderators here are beautiful people with large > hearts and a large knowledge base. So for my part I say feel free to come > here and share your feelings we will listen and and respond.>> You are not alone.>> Greg aka Krumdawg>> >>>> It has been a long road for me. When I was young I was diagnosed with >> many different but Wong mental D/o I spent a lot of time in the hospitals >> for them. I know when I was a kid the doctors were guessing. As I got >> older the symptoms grew but were unexplained. Doctors were then leaning >> to the suto side of things then I stared with the seizures. It took an >> intense year of seizures and the very large brain lesions to finally come >> up with Neurosarcoidosis. The time that has passed I feel has hampered my >> life I feel different even different from the rest of those who suffer >> from this I was told I was apart of the 5% that get sarcoid apart of the >> 1% that get the neurosarcoidosis and .1% that only get neurosarcoid. I >> feel alone because of this no one can relate I'm in remission now but I >> know it will strike again worse than before it is how the history of time >> has always been. I just need to share this it has been wrapped up in me >> haunting me angering me, thanks for listening.>>>>>>> ------------ --------- --------- ------>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community>>> CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time.....>> Message Archives:-> http://groups. yahoo.com/ group/Neurosarco idosis/messages>> Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups. yahoo.com/ group/Neurosarco idosis/database>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 RIGHT ON!!! SAY IT, KRUMDAWG!!!(See my message)Keep on keeping on, everyone!!!Love to all of you,Subject: Re: aloneTo: Neurosarcoidosis Date: Tuesday, November 24, 2009, 2:21 PM "djonesdak" First let say you are not alone I also have Neurosarcoidosis and have been thru the mis-diagnoses in fact I was told and treated for Vascular Migraine headaches.In fact I was first diagnosed with these headaches at approx 3 or 4 years of age. During my teenage years was the worst time for me I missed a lot of high school.But from 18 to about 20 they tapered off and disappeared. Now in Apr May of 2008 I was Hospitalized with extreme headaches. And for approx 6 weeks they tried to determine what I had a real scary time for me. For they threw around Cancer, MS, TB, Lupus and a whole range of scary ones. And when I went in to the hospital I though the headaches had returned. Well it came down to Neurosarcoidosis and when they explained it to me it did not seem that scary. Then it was thought I was in remission as of Aug 2008. So I started working out again went back to work. I thought I was getting health again. I was even working 12 hours a day 6 day a week. I was biking 15 miles to work and Home I went back on all my supplements. I thought heck I got this licked. Then I ended up laying on the floor of a friends Apartment unable to breath or move (That was about Nov 2008). I had returned the Neurosarcoidosis and as I keep learning about this I have learned that I was supercharging my immune system and there in fact I supercharged the sarcoidosis. At this time I am following what my doctors tell me to do and I am finding out more and more about this I wonder if I might have had this for a longer point of time then we think. I tell you all of this to let you know you are not alone. I know we are rare in sarcoidosis but we are here. And we do understand. So please we listen and do please do not feel alone. I know those feelings. I have recently started going to a Sarcoidosis support group meeting we have here in North Texas.. I would recommended that or if not in your are please use this site the people and moderators here are beautiful people with large hearts and a large knowledge base. So for my part I say feel free to come here and share your feelings we will listen and and respond. You are not alone. Greg aka Krumdawg > > It has been a long road for me. When I was young I was diagnosed with many different but Wong mental D/o I spent a lot of time in the hospitals for them. I know when I was a kid the doctors were guessing. As I got older the symptoms grew but were unexplained. Doctors were then leaning to the suto side of things then I stared with the seizures. It took an intense year of seizures and the very large brain lesions to finally come up with Neurosarcoidosis. The time that has passed I feel has hampered my life I feel different even different from the rest of those who suffer from this I was told I was apart of the 5% that get sarcoid apart of the 1% that get the neurosarcoidosis and .1% that only get neurosarcoid. I feel alone because of this no one can relate I'm in remission now but I know it will strike again worse than before it is how the history of time has always been. I just need to share this it has been wrapped up in me haunting me angering me, thanks for listening. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2009 Report Share Posted November 25, 2009 I am also one of the .1%. I've had 2 brain surgeries for shunts.Join our Sock Challenge for Orphans in Kazakhstan http://groups. yahoo.com/ group/Mittens_ for_Akkol/ grannylunatic@... Subject: Re: aloneTo: Neurosarcoidosis Date: Tuesday, November 24, 2009, 3:48 PM Hi ,I am one of the .1% also. My road to diagnosis was not incredibly long once they really started looking. For years I was told that nothing was wrong but after being hospitalized for a seziure and being unsteady they came up with a short list of possible diagnosises. I was the one in denial despite the fact that my mother had the same diagnosis after being treated for cancer and other wrong diagnosises. It was many years before my mother had organ involvment outside of the nervous system and they have yet to confirm any cardiac or pulmonary involvment in me. I have had arrythmia issues since infancy.They thought I had an atypical case of MS for a short time even though the MRI never looked consistent for MS or responded to treatment like MS does.I sometimes felt like a lab rat when seeing the docs.I actually statrted feeling better when one of my docs admitted he was baffled. Your not alone we may be few but we do exist.>> It has been a long road for me. When I was young I was diagnosed with many different but Wong mental D/o I spent a lot of time in the hospitals for them. I know when I was a kid the doctors were guessing. As I got older the symptoms grew but were unexplained. Doctors were then leaning to the suto side of things then I stared with the seizures. It took an intense year of seizures and the very large brain lesions to finally come up with Neurosarcoidosis. The time that has passed I feel has hampered my life I feel different even different from the rest of those who suffer from this I was told I was apart of the 5% that get sarcoid apart of the 1% that get the neurosarcoidosis and .1% that only get neurosarcoid. I feel alone because of this no one can relate I'm in remission now but I know it will strike again worse than before it is how the history of time has always been. I just need to share this it has been wrapped up in me haunting me angering me, thanks for listening.> Quote Link to comment Share on other sites More sharing options...
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