Guest guest Posted October 23, 2004 Report Share Posted October 23, 2004 Kim, I've wondered how you were, if you were safe. Are you glad to be back in the States? I haven't had the experiences you have had; I know others have, so hopefully someone will share. I have been off the Pred & Imuran for 3 months, in agreement with my doctors. We want to rule out a steroid myopathy. It makes me nervous, thinking the sarc monster could pop up anywhere. I just had an ACE level; haven't gotten the results yet. Did you have problems with the sarc meds? Wishing you the best, Rose Original Message: ----------------- From: kalostad kalostad@... Date: Sat, 23 Oct 2004 01:58:06 -0000 To: Neurosarcoidosis Subject: TIA in Neurosarc I have not posted to the gruop for a very long time. I apologize for popping in without reading up on recent posts first but am desperate for some input etc. I was diagnosed with neurosarcoidosis in march of 2001, i had pretty severe involvement. i took myself off of medications this past february for several reasons. I did so well (with the exception of developing type 1 diabetes a few weeks after stopping meds) from april or so until beg. sept. i started having troubles again that were eerily like my first severe sarcoid flare up. tuesday morning i had another stroke, after having been doing soo very well for so long. i have been in the hospital for days to rule out any other possible cause for the tia. i was told that i am at extemely high risk for full stroke because i have had several of these attacks and that i am considered to have cns vascular neurosarc involvemnt and meningitis again as well. i am devestated. can anyone share a simliar history and what direction their path took/has taken, what outcomes they have had, how they were tested, treated, followed etc.... any info is much appreciated, kimberly , now in ohio, back from kuwiat ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community NS CHAT:- Has been cancelled for now. 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 October 23, 2004 Report Share Posted October 23, 2004 , I have not had these problems yet so I am not able to help you with them but I am sure some of the others on the list can give you some advice. Just know that we all do care about you and you will be in my thoughts and well wishes each and every day. Sending lots of hugs, Darlene NS Co-Owner/Moderator TIA in Neurosarc I have not posted to the gruop for a very long time. I apologize for popping in without reading up on recent posts first but am desperate for some input etc.I was diagnosed with neurosarcoidosis in march of 2001, i had pretty severe involvement. i took myself off of medications this past february for several reasons. I did so well (with the exception of developing type 1 diabetes a few weeks after stopping meds) from april or so until beg. sept. i started having troubles again that were eerily like my first severe sarcoid flare up. tuesday morning i had another stroke, after having been doing soo very well for so long. i have been in the hospital for days to rule out any other possible cause for the tia. i was told that i am at extemely high risk for full stroke because i have had several of these attacks and that i am considered to have cns vascular neurosarc involvemnt and meningitis again as well. i am devestated. can anyone share a simliar history and what direction their path took/has taken, what outcomes they have had, how they were tested, treated, followed etc....any info is much appreciated,kimberly , now in ohio, back from kuwiat~~~~ *** ~~~ *** ~~~ *** ~~~~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 October 23, 2004 Report Share Posted October 23, 2004 , When I had my first symptoms of neuro sarc, it was the tia's and vertigo attacks. I also had a very short term memory and I woulod actually forget what I was talking about in the middle of the sentence. My kids got very good at finishing my sentences. My treatment was large doses of pred. It was horrible, but it did help. I am now off of the pred, and am doing better. I do have other problems but as for the tia's and vertigo, that is all gone for now. Hope that this helps. LynneDarlene wrote: , I have not had these problems yet so I am not able to help you with them but I am sure some of the others on the list can give you some advice. Just know that we all do care about you and you will be in my thoughts and well wishes each and every day. Sending lots of hugs, Darlene NS Co-Owner/Moderator TIA in Neurosarc I have not posted to the gruop for a very long time. I apologize for popping in without reading up on recent posts first but am desperate for some input etc.I was diagnosed with neurosarcoidosis in march of 2001, i had pretty severe involvement. i took myself off of medications this past february for several reasons. I did so well (with the exception of developing type 1 diabetes a few weeks after stopping meds) from april or so until beg. sept. i started having troubles again that were eerily like my first severe sarcoid flare up. tuesday morning i had another stroke, after having been doing soo very well for so long. i have been in the hospital for days to rule out any other possible cause for the tia. i was told that i am at extemely high risk for full stroke because i have had several of these attacks and that i am considered to have cns vascular neurosarc involvemnt and meningitis again as well. i am devestated. can anyone share a simliar history and what direction their path took/has taken, what outcomes they have had, how they were tested, treated, followed etc....any info is much appreciated,kimberly , now in ohio, back from kuwiat~~~~ *** ~~~ *** ~~~ *** ~~~~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 October 29, 2004 Report Share Posted October 29, 2004 , Good lord i am sorry to hear about all you have been through, as always it is easy for someone to remind you things could be a lot worse. and to remember your blessings. it is sad that it takes hearing the trials of others to jog such memories. I am glad that you made it through and have found prayer as a comfort and source of strength. know you will be in mine. take care, kim > Kim, > > Hi! here. Well! Where do we begin? When I met you online you > were very sick in Kuwait and I was in a pretty good remission. Well, > Tracie was right. I have been to the brink and back. I don't really > want to rehash -- maybe Rose can do some of it for you. I will say > that almost everyone had given up on me. After a severe staph > infection that festered while it was hidden by a maximum chemo > treatment of cytoxan to the point that i developed very severe sepsis > and nearly died -- before and after i got to the hospital, and a couple > of times after I had been sent home. Evidently I developed something > caused toxic encephalapathy and only way I got rid of it was going off > all my meds (ouch, ouch, ouch, scream, kick, whatever... I had the > emotional maturity of a five year old and the verbal ability of a 2-3 > year old). The weird think was that even though I went through spells > of not being able to make myself understood at all -- heck, I made up > my own language (I have it on video tape and it is very weird) -- even > through all that there was a little part of me that was still in tact > way back in the back of my brain -- I was sitting at the helm, but I > couldn't make anything come out the way it was supposed to. I have > much greater regard for autistic people and folks with severe learning > disabilities, because the harder I tried the angrier I became. I tell > you -- I made a promise that if I were ever in the opportunity to teach > remedial reading or English as a second language again, I would never > again use the tactic of " pushing, " no matter how gently. What normal > people may see as encouragement, for the person who desperately wants > to perform but gets worse the harder he or she tries. > > Luckily, and against the expectations of just about every medical > professional, I regained my mental, speech, and communication > capacities. Personally, I attribute it to prayer. Not that it was the > kind or the religion of the prayer, but for the first time in my life I > actually asked God to help me -- to save me. I didn't ask to get > better -- just to live. Heck, I said I'd settle for being a rock that > held the front door open -- just so I could watch my sons grow to > manhood and look after my husband. I don't think I have ever prayed > for myself before, although I don't think I was ever taught the > practice was wrong or unspiritual. I just have always trusted that God > would know what was the best thing for me, and I should just trust in > the will of God (I'm not tryihng to get religious here, and if I am > offending anyone, please know I have respect for diversity of spiritual > expression and even the right of an individual to negate the existence > of God. Enough said. What I believe is that it took my free will - - my > belief that I deserved the right to live and to stop suffering. And > armed with that belief -- that I had the self-esteem to believe I was > worth saving and worth fighting for -- I have never since then just sat > back when things were going wrong with my body. I am on top of every > test result, every blood test, every film, every lump. So far I caught > a serious glucose problem through methodically charting my biweekly > blood tests. As it turned out, my blood sugar had been risiing > steadily for six months, and by the time I saw the diabetes center > folks, I was averaging in the mid three hundreds daily. I had no idea > that my extreme increase in fatigue (my husband described it as > listless and lethargic. > > Now, I'm on Lantus (insulin) once a day, and I check my sugar four > times or more a day. I've been really doing well. When my narcolepsy > and waking dreams started recurring last month, I called myself > (instead of going through my immunologist's office) and got in to see > the doctor and his fellow within a week. I tell you, my narcolepsy (or > whatever it turns out to be) was in full bloom -- I kept blacking out > in the middle of sentences, and had at least two episodes where I fell > asleep but was still conversing with my eyes open -- only the others in > the room had no idea what I was talking about since it was my private > dreamworld. I get to have the sleep test and the narcolepsy test in a > week. > > Hope I didn't go into too much or the wrong details. I will say one > thing for having a bad case of this illness -- I thought teaching > middle school and then high school destroyed any dignity I might have > surrounded myself with. There's always a student who will tell you the > most embarrassing things -- in public. No part of one's appearance, > one's mannerisms, just about an;ything observable is fairgame. But > there is something worse. It's when you are in the hospital with > barely a few whisps of hair on your head, unable to speak to be > understood, and blown up like a balloon at the Macy's day parade. You > can't imagine -- well I guess you can -- it's as if you've become a > stupid animal to them and there is NO respect afforded to you. The > worst thing? I was placed on a portable commode and left far away from > a call button. Sitting with a single hospital gown that now covered > about one third of me, sitting over my excrement, my doctors came and > went on their rounds. They couldn't understand my predicament, all the > while talking at me as if I had a toddler's mentality and examining the > horrible bruises all over my chest from the failed attempt at putting > in a mainline (I got the distributor cap connected to my femural artery > instead. > > As you might guess, then, something so cute as a purple faery costume > amongst loving friends can never cause me pause -- I'd do just about > anything for a laugh, and besides, if we can't laugh at ourselves, > really, what would we do???? > > Love to see you back, Kim > Reneness, BSF > > > I have not posted to the gruop for a very long time. I apologize > > for popping in without reading up on recent posts first but am > > desperate for some input etc. > > > > I was diagnosed with neurosarcoidosis in march of 2001, i had pretty > > severe involvement. i took myself off of medications this past > > february for several reasons. I did so well (with the exception of > > developing type 1 diabetes a few weeks after stopping meds) from > > april or so until beg. sept. i started having troubles again that > > were eerily like my first severe sarcoid flare up. tuesday morning > > i had another stroke, after having been doing soo very well for so > > long. i have been in the hospital for days to rule out any other > > possible cause for the tia. i was told that i am at extemely high > > risk for full stroke because i have had several of these attacks and > > that i am considered to have cns vascular neurosarc involvemnt and > > meningitis again as well. > > > > i am devestated. can anyone share a simliar history and what > > direction their path took/has taken, what outcomes they have had, > > how they were tested, treated, followed etc.... > > > > any info is much appreciated, > > kimberly , now in ohio, back from kuwiat > > > > > > > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > The Neurosarcoidosis Community > > > > NS CHAT:- Has been cancelled for now. > > > > 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...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.