Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 I'm just chilling. I got my VEP and SSEP EEGs the other day and have a bright red raw spot in the middle of my forehead where they sanded a little to aggressively to prove it. I had a neuro appointment scheduled for later that day to interpret it. Unfortunately the doctor called in sick! =) Just burying my head in the sand for more waiting. Maybe I can get results by phone. This time someone drove me up to Seattle and it was so much better than trying to drive myself and getting there exhausted and barely able to stand upright like last time. Maybe some folks are out enjoying spring. Several of my boards have lower traffic. Maybe it's a good thing. Cheers, Darrin To: neurosarcoidosis From: tiodaat2001@...Date: Thu, 1 Apr 2010 00:30:34 -0700Subject: where is everyone??? Wow, talk about a disappearing act-- you all are excellant! This is the slowest I've seen the forum in years-- and I hope that it is because we're all off taking care of ourself. I'm back on a prednisone burst-- trying to get my lungs to calm down so I can breath. I know we've all been dealing with ALOT of weather-- I'm hoping that none of you are suffering from the floods back east, I know you've gotten hammered with some serious weather-- and all that goes along with a nasty winter. Fortunately, up until this week, we've only had a couple of cold days-- but I did get to wake up this morning to a storm that was literally in such weird swells that it was snowing, hailing, raining and the sun was shining-- all at the same time. I opened the drapes in our bedroom up-- to the blackest cloud, the trees covered in 2 inches of snow from last night, the deck was covered with snow and hail-- the trees were beginning to drop the blanket of snow on any unsuspecting dog just as she was squatting (that was funny! poor pup couldn't figure it out-- do I pee or do I try to catch the huge snowball that is falling from the sky..) or do I just hurry it all up and forget the potty stop and get inside and watch from the safety of the living room window-- or do I catch that snowball-- heck, I am a lab-- snowball fight!!!! Then from the front window, it was hailing dime size chunks on the yard-- and the driveway was getting rained on-- the street was lit up with the sun shining brightly! It was so awesome-- and warm with the fire going! Good things-- especially if it doesn't wipe out the apple orchards again this year. I do hope that you are all safe and as well as can be-- and that this break is all of us trying to get ready for Easter celebrations- Check in and say howdy, Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 gotta love those battle test scars- you can sure tell when we're on steroids- the skin is not what it used to be! I do hope you get your results quickly. I see you're still getting the rainstorms up north-- I'm in the Sacramento Valley (foothills) and most is going north of us. i do have to admit that I love the extra rain and weather we've been getting-- our lakes sure need the water and these mountains need the rain to help keep the fire danger lower. Take care, Tracie To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, April 1, 2010 6:57:32 AMSubject: RE: where is everyone??? I'm just chilling. I got my VEP and SSEP EEGs the other day and have a bright red raw spot in the middleof my forehead where they sanded a little to aggressively to prove it. I had a neuro appointment scheduledfor later that day to interpret it. Unfortunately the doctor called in sick! =) Just burying my head in the sand for more waiting. Maybe I can get results by phone. This time someonedrove me up to Seattle and it was so much better than trying to drive myself and getting there exhaustedand barely able to stand upright like last time. Maybe some folks are out enjoying spring. Several of my boards have lower traffic. Maybe it's a good thing. Cheers,Darrin To: neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Thu, 1 Apr 2010 00:30:34 -0700Subject: where is everyone??? Wow, talk about a disappearing act-- you all are excellant! This is the slowest I've seen the forum in years-- and I hope that it is because we're all off taking care of ourself. I'm back on a prednisone burst-- trying to get my lungs to calm down so I can breath. I know we've all been dealing with ALOT of weather-- I'm hoping that none of you are suffering from the floods back east, I know you've gotten hammered with some serious weather-- and all that goes along with a nasty winter. Fortunately, up until this week, we've only had a couple of cold days-- but I did get to wake up this morning to a storm that was literally in such weird swells that it was snowing, hailing, raining and the sun was shining-- all at the same time. I opened the drapes in our bedroom up-- to the blackest cloud, the trees covered in 2 inches of snow from last night, the deck was covered with snow and hail-- the trees were beginning to drop the blanket of snow on any unsuspecting dog just as she was squatting (that was funny! poor pup couldn't figure it out-- do I pee or do I try to catch the huge snowball that is falling from the sky..) or do I just hurry it all up and forget the potty stop and get inside and watch from the safety of the living room window-- or do I catch that snowball-- heck, I am a lab-- snowball fight!!!! Then from the front window, it was hailing dime size chunks on the yard-- and the driveway was getting rained on-- the street was lit up with the sun shining brightly! It was so awesome-- and warm with the fire going! Good things-- especially if it doesn't wipe out the apple orchards again this year. I do hope that you are all safe and as well as can be-- and that this break is all of us trying to get ready for Easter celebrations- Check in and say howdy, Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 EEG was negative which caught me by surprise. Next week is lumbar puncture. One thing I like about this neuro is when she's available she moves along quickly. Should tell us something if the high plasma ACE levels show up in the csf too. I'm not on steroids. My skin has just become rather delicate in the past year after decades of being tough as nails. Who knows. Cheers, Darrin To: Neurosarcoidosis From: tiodaat2001@...Date: Thu, 1 Apr 2010 10:56:24 -0700Subject: Re: where is everyone??? gotta love those battle test scars- you can sure tell when we're on steroids- the skin is not what it used to be! I do hope you get your results quickly. I see you're still getting the rainstorms up north-- I'm in the Sacramento Valley (foothills) and most is going north of us. i do have to admit that I love the extra rain and weather we've been getting-- our lakes sure need the water and these mountains need the rain to help keep the fire danger lower. Take care, Tracie To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, April 1, 2010 6:57:32 AMSubject: RE: where is everyone??? I'm just chilling. I got my VEP and SSEP EEGs the other day and have a bright red raw spot in the middleof my forehead where they sanded a little to aggressively to prove it. I had a neuro appointment scheduledfor later that day to interpret it. Unfortunately the doctor called in sick! =) Just burying my head in the sand for more waiting. Maybe I can get results by phone. This time someonedrove me up to Seattle and it was so much better than trying to drive myself and getting there exhaustedand barely able to stand upright like last time. Maybe some folks are out enjoying spring. Several of my boards have lower traffic. Maybe it's a good thing. Cheers,Darrin To: neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Thu, 1 Apr 2010 00:30:34 -0700Subject: where is everyone??? Wow, talk about a disappearing act-- you all are excellant! This is the slowest I've seen the forum in years-- and I hope that it is because we're all off taking care of ourself. I'm back on a prednisone burst-- trying to get my lungs to calm down so I can breath. I know we've all been dealing with ALOT of weather-- I'm hoping that none of you are suffering from the floods back east, I know you've gotten hammered with some serious weather-- and all that goes along with a nasty winter. Fortunately, up until this week, we've only had a couple of cold days-- but I did get to wake up this morning to a storm that was literally in such weird swells that it was snowing, hailing, raining and the sun was shining-- all at the same time. I opened the drapes in our bedroom up-- to the blackest cloud, the trees covered in 2 inches of snow from last night, the deck was covered with snow and hail-- the trees were beginning to drop the blanket of snow on any unsuspecting dog just as she was squatting (that was funny! poor pup couldn't figure it out-- do I pee or do I try to catch the huge snowball that is falling from the sky..) or do I just hurry it all up and forget the potty stop and get inside and watch from the safety of the living room window-- or do I catch that snowball-- heck, I am a lab-- snowball fight!!!! Then from the front window, it was hailing dime size chunks on the yard-- and the driveway was getting rained on-- the street was lit up with the sun shining brightly! It was so awesome-- and warm with the fire going! Good things-- especially if it doesn't wipe out the apple orchards again this year. I do hope that you are all safe and as well as can be-- and that this break is all of us trying to get ready for Easter celebrations- Check in and say howdy, Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2010 Report Share Posted April 1, 2010 Hey Darrin, Just another annoying/frustrating fact about this disease - tests are negative, then positive, then negative. I've had positve EEGs and now negative ones but I had a seizure in front of my neurologist so that's proof for him. Did you ask about a Gallium scan? Rach PS: In response to where is everyone - with my head in text books for uni - oh and the foot started again > > > EEG was negative which caught me by surprise. > > > > Next week is lumbar puncture. > > > > One thing I like about this neuro is when she's available she moves along quickly. > > Should tell us something if the high plasma ACE levels show up in the csf too. > > > > I'm not on steroids. My skin has just become rather delicate in the past year after > > decades of being tough as nails. Who knows. > > > > Cheers, > > Darrin > > > > > > > To: Neurosarcoidosis > From: tiodaat2001@... > Date: Thu, 1 Apr 2010 10:56:24 -0700 > Subject: Re: where is everyone??? > > > > > > gotta love those battle test scars- you can sure tell when we're on steroids- the skin is not what it used to be! I do hope you get your results quickly. I see you're still getting the rainstorms up north-- I'm in the Sacramento Valley (foothills) and most is going north of us. i do have to admit that I love the extra rain and weather we've been getting-- our lakes sure need the water and these mountains need the rain to help keep the fire danger lower. > Take care, > Tracie > > > > > > > To: " neurosarcoidosis " <neurosarcoidosis > > Sent: Thu, April 1, 2010 6:57:32 AM > Subject: RE: where is everyone??? > > > > I'm just chilling. I got my VEP and SSEP EEGs the other day and have a bright red raw spot in the middle > of my forehead where they sanded a little to aggressively to prove it. I had a neuro appointment scheduled > for later that day to interpret it. Unfortunately the doctor called in sick! =) > > Just burying my head in the sand for more waiting. Maybe I can get results by phone. This time someone > drove me up to Seattle and it was so much better than trying to drive myself and getting there exhausted > and barely able to stand upright like last time. > > Maybe some folks are out enjoying spring. Several of my boards have lower traffic. Maybe it's a good thing. > > Cheers, > Darrin > > > > > To: neurosarcoidosis@ yahoogroups. com > From: tiodaat2001@ yahoo.com > Date: Thu, 1 Apr 2010 00:30:34 -0700 > Subject: where is everyone??? > > > > > > > > > > > > > > > > > > > > Wow, talk about a disappearing act-- you all are excellant! This is the slowest I've seen the forum in years-- and I hope that it is because we're all off taking care of ourself. > I'm back on a prednisone burst-- trying to get my lungs to calm down so I can breath. I know we've all been dealing with ALOT of weather-- I'm hoping that none of you are suffering from the floods back east, I know you've gotten hammered with some serious weather-- and all that goes along with a nasty winter. > Fortunately, up until this week, we've only had a couple of cold days-- but I did get to wake up this morning to a storm that was literally in such weird swells that it was snowing, hailing, raining and the sun was shining-- all at the same time. > I opened the drapes in our bedroom up-- to the blackest cloud, the trees covered in 2 inches of snow from last night, the deck was covered with snow and hail-- the trees were beginning to drop the blanket of snow on any unsuspecting dog just as she was squatting (that was funny! poor pup couldn't figure it out-- do I pee or do I try to catch the huge snowball that is falling from the sky..) or do I just hurry it all up and forget the potty stop and get inside and watch from the safety of the living room window-- or do I catch that snowball-- heck, I am a lab-- snowball fight!!!! > Then from the front window, it was hailing dime size chunks on the yard-- and the driveway was getting rained on-- the street was lit up with the sun shining brightly! It was so awesome-- and warm with the fire going! Good things-- especially if it doesn't wipe out the apple orchards again this year. > I do hope that you are all safe and as well as can be-- and that this break is all of us trying to get ready for Easter celebrations- > Check in and say howdy, > Blessings, > Tracie > NS Co-owner/moderator > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2010 Report Share Posted April 2, 2010 Hi Rach, I regret I wasn't able to get the EEGs done while I was still having myoclonic jerks due to financial issues. While really glad those stopped, getting something they could see would've been nice. My first neuro didn't even believe I was having myoclonic jerks, even though I couldn't raise my arm above my head. My second neuro believes me even though they're long passed. Didn't ask about the gallium. With high ACE that'd likely light up like an inflammation Christmas tree, no? Sounds like a logical next step after lp. Cheers, Darrin To: Neurosarcoidosis From: stiks11@...Date: Fri, 2 Apr 2010 01:58:09 +0000Subject: Re: where is everyone??? Hey Darrin,Just another annoying/frustrating fact about this disease - tests are negative, then positive, then negative. I've had positve EEGs and now negative ones but I had a seizure in front of my neurologist so that's proof for him.Did you ask about a Gallium scan?RachPS: In response to where is everyone - with my head in text books for uni - oh and the foot started again >> > EEG was negative which caught me by surprise.> > > > Next week is lumbar puncture.> > > > One thing I like about this neuro is when she's available she moves along quickly.> > Should tell us something if the high plasma ACE levels show up in the csf too.> > > > I'm not on steroids. My skin has just become rather delicate in the past year after> > decades of being tough as nails. Who knows.> > > > Cheers,> > Darrin> > > > > > > To: Neurosarcoidosis > Date: Thu, 1 Apr 2010 10:56:24 -0700> Subject: Re: where is everyone???> > > > > > gotta love those battle test scars- you can sure tell when we're on steroids- the skin is not what it used to be! I do hope you get your results quickly. I see you're still getting the rainstorms up north-- I'm in the Sacramento Valley (foothills) and most is going north of us. i do have to admit that I love the extra rain and weather we've been getting-- our lakes sure need the water and these mountains need the rain to help keep the fire danger lower.> Take care,> Tracie> > > > > > > To: "neurosarcoidosis " <neurosarcoidosis >> Sent: Thu, April 1, 2010 6:57:32 AM> Subject: RE: where is everyone???> > > > I'm just chilling. I got my VEP and SSEP EEGs the other day and have a bright red raw spot in the middle> of my forehead where they sanded a little to aggressively to prove it. I had a neuro appointment scheduled> for later that day to interpret it. Unfortunately the doctor called in sick! =)> > Just burying my head in the sand for more waiting. Maybe I can get results by phone. This time someone> drove me up to Seattle and it was so much better than trying to drive myself and getting there exhausted> and barely able to stand upright like last time.> > Maybe some folks are out enjoying spring. Several of my boards have lower traffic. Maybe it's a good thing.> > Cheers,> Darrin> > > > > To: neurosarcoidosis@ yahoogroups. com> From: tiodaat2001@ yahoo.com> Date: Thu, 1 Apr 2010 00:30:34 -0700> Subject: where is everyone???> > > > > > > > > > > > > > > > > > > > Wow, talk about a disappearing act-- you all are excellant! This is the slowest I've seen the forum in years-- and I hope that it is because we're all off taking care of ourself. > I'm back on a prednisone burst-- trying to get my lungs to calm down so I can breath. I know we've all been dealing with ALOT of weather-- I'm hoping that none of you are suffering from the floods back east, I know you've gotten hammered with some serious weather-- and all that goes along with a nasty winter.> Fortunately, up until this week, we've only had a couple of cold days-- but I did get to wake up this morning to a storm that was literally in such weird swells that it was snowing, hailing, raining and the sun was shining-- all at the same time. > I opened the drapes in our bedroom up-- to the blackest cloud, the trees covered in 2 inches of snow from last night, the deck was covered with snow and hail-- the trees were beginning to drop the blanket of snow on any unsuspecting dog just as she was squatting (that was funny! poor pup couldn't figure it out-- do I pee or do I try to catch the huge snowball that is falling from the sky..) or do I just hurry it all up and forget the potty stop and get inside and watch from the safety of the living room window-- or do I catch that snowball-- heck, I am a lab-- snowball fight!!!!> Then from the front window, it was hailing dime size chunks on the yard-- and the driveway was getting rained on-- the street was lit up with the sun shining brightly! It was so awesome-- and warm with the fire going! Good things-- especially if it doesn't wipe out the apple orchards again this year. > I do hope that you are all safe and as well as can be-- and that this break is all of us trying to get ready for Easter celebrations- > Check in and say howdy, > Blessings,> Tracie> NS Co-owner/moderator> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2010 Report Share Posted April 2, 2010 Just wanted to check in ...i know the board is very quiet. i have my liver doc appt tues to find out what they are going to do about the portal hypertention. so i have been worrying about that. all else is quiet and enjoying the beautiful weather we are having. I wish you all a blessed easter holiday and a pain free day. Many blessings and a pain free day Please support Neurosarcoidosis society Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2010 Report Share Posted April 2, 2010 , it's good to hear from you. I do hope that your appt goes well next week. It's my understanding that portal hypertension can be controlled with medication-- so let's keep that in mind. Do you have plans for the weekend? We used to take a picnic lunch and go out to Table Top Mountain-- it's a flat lava flow from many thousands of years ago-- and it's a great open place to fly kites and this time of year, it's always in full bloom with the most beautiful wildflowers. Generally, this area is pretty remote-- a couple of cattle ranchers own most of it-- and few people go there- but come Easter Sunday-- and it'll be packed. Traditions are so much a part of our life-- I truly love this one. Blessings, Tracie NS Co-onwer/moderator To: Neurosarcoidosis Sent: Fri, April 2, 2010 8:14:49 AMSubject: Re: where is everyone??? Just wanted to check in ...i know the board is very quiet. i have my liver doc appt tues to find out what they are going to do about the portal hypertention. so i have been worrying about that. all else is quiet and enjoying the beautiful weather we are having. I wish you all a blessed easter holiday and a pain free day. Many blessings and a pain free day Please support Neurosarcoidosis societyJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2010 Report Share Posted April 2, 2010 While you had the snow we had the rain for the beginning of the week here in Northeast PA and now we have jumped right into summer with almost 80 degree weather. Wishing everyone who celebrates Easter a blessed and peaceful one and those who celebrate Passover good wishes. Everyone else celebrate the arrival of spring. Take careMattSubject: where is everyone???To: neurosarcoidosis Date: Thursday, April 1, 2010, 3:30 AM Wow, talk about a disappearing act-- you all are excellant! This is the slowest I've seen the forum in years-- and I hope that it is because we're all off taking care of ourself. I'm back on a prednisone burst-- trying to get my lungs to calm down so I can breath. I know we've all been dealing with ALOT of weather-- I'm hoping that none of you are suffering from the floods back east, I know you've gotten hammered with some serious weather-- and all that goes along with a nasty winter. Fortunately, up until this week, we've only had a couple of cold days-- but I did get to wake up this morning to a storm that was literally in such weird swells that it was snowing, hailing, raining and the sun was shining-- all at the same time. I opened the drapes in our bedroom up-- to the blackest cloud, the trees covered in 2 inches of snow from last night, the deck was covered with snow and hail-- the trees were beginning to drop the blanket of snow on any unsuspecting dog just as she was squatting (that was funny! poor pup couldn't figure it out-- do I pee or do I try to catch the huge snowball that is falling from the sky..) or do I just hurry it all up and forget the potty stop and get inside and watch from the safety of the living room window-- or do I catch that snowball-- heck, I am a lab-- snowball fight!!!! Then from the front window, it was hailing dime size chunks on the yard-- and the driveway was getting rained on-- the street was lit up with the sun shining brightly! It was so awesome-- and warm with the fire going! Good things-- especially if it doesn't wipe out the apple orchards again this year. I do hope that you are all safe and as well as can be-- and that this break is all of us trying to get ready for Easter celebrations- Check in and say howdy, Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2010 Report Share Posted April 3, 2010 Happy Easter to all. I've been gone a week, we " drove " to a Resort in Mexico from N. CO. Penna Pensca, something like that. and I hope this is the last road trip like that we take. Coming home our boys wanted to drive straight through, that was a killer, although I didn't drive, our boys did most of it. My husband had an Angina attack, took the Nirtro and said he was fine, I wanted to check into the ER and at least get an EKG, but not my stubborn Husband:) We had a good time, but still not too cold, only a couple nice days, then what do I do? Can't go out in the sun? They did have a supper warm indoor pool and I played in that a couple times. All my kids went, and I have the feeling this will be the last time we all do a vacation as a family?? I have been feeling good, but I have to say I am sick of that wheel chair, we did some shopping in town, not as cheap as it use to be, anyway, it is so hard for me to walk a lot, and Mexico is not wheel chair friendly:) I had a little melt down, my one son and daughter are great about pushing me around, but my other son doesn't like doing it, and my husband won't when the kids are there:) I'm not sure I would go back to that resort again. We have a time share, that we were about to lose, so had to find somewhere we could go and drive. I pray you all have a very Blessed Easter, you are in my prayers. Blessings, Marla Wow, talk about a disappearing act-- you all are excellant! This is the slowest I've seen the forum in years-- and I hope that it is because we're all off taking care of ourself. I'm back on a prednisone burst-- trying to get my lungs to calm down so I can breath. I know we've all been dealing with ALOT of weather-- I'm hoping that none of you are suffering from the floods back east, I know you've gotten hammered with some serious weather-- and all that goes along with a nasty winter. Fortunately, up until this week, we've only had a couple of cold days-- but I did get to wake up this morning to a storm that was literally in such weird swells that it was snowing, hailing, raining and the sun was shining-- all at the same time. I opened the drapes in our bedroom up-- to the blackest cloud, the trees covered in 2 inches of snow from last night, the deck was covered with snow and hail-- the trees were beginning to drop the blanket of snow on any unsuspecting dog just as she was squatting (that was funny! poor pup couldn't figure it out-- do I pee or do I try to catch the huge snowball that is falling from the sky..) or do I just hurry it all up and forget the potty stop and get inside and watch from the safety of the living room window-- or do I catch that snowball-- heck, I am a lab-- snowball fight!!!! Then from the front window, it was hailing dime size chunks on the yard-- and the driveway was getting rained on-- the street was lit up with the sun shining brightly! It was so awesome-- and warm with the fire going! Good things-- especially if it doesn't wipe out the apple orchards again this year. I do hope that you are all safe and as well as can be-- and that this break is all of us trying to get ready for Easter celebrations- Check in and say howdy, Blessings, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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