Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 In a message dated 8/24/01 8:47:03 AM Pacific Daylight Time, Bostonlizz@... writes: << I wrote to Jane Buckner and she answered that when she gets a data base set up in a few months that she will be researching allergy and possibly environmental connections. Hey, we're making progress!! G >> , oh what great news....about Dr B I mean, not your allergies. LOL If we keep sending her information it will all help.... Thanks for letting us know... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2001 Report Share Posted August 24, 2001 Several of you are saying that you are flaring and wonder about a seasonal connection. Read my post of August 21 [update on allergy]. There is no doubt that my flares from April to September are allergy related. I wrote to Jane Buckner and she answered that when she gets a data base set up in a few months that she will be researching allergy and possibly environmental connections. Hey, we're making progress!! G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 I find that any changes in the seasons is hard on me. My sarcoid-induced arthritis really goes nuts with barometric pressure changes. This last week my thumb on my left hand has gone back to being numb, except on the out-side of it. If I even touch that area even with my finger-- I am going thru the roof. I have a feeling that the myelin sheath has broken thru---- and that it's raw nerve ending there. Damn. I also find that hot weather wipes me out-- but come winter, I cna't tolerate the cold below 50 degrees. Funny thing is, if I put on my slippers because my feet are cold-- within minutes the burning sensation of each individual nerve is nuts. Go figure. From what I've been reading on NS and the hypothalmus and pituatary glands-- as well as the adrenal insufficiency from years of steroids--- it all makes sense- and if I can get the MD to step up- I do believe these are issues that will have answers. Take care, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 Tracie,This makes total sense. For the past few weeks I have had left leg/foot pain (even to have clothes touch me) in the late afternoon (I take my prednisone around 4-5AM so must be wearing down by 12 hours later). Sometimes it will hurt so bad I will cry. That is the same leg that is jerky. Back in 2005 I had numbness (suddenly) to my right thumb and first two fingers that lasted about 2 months but there was no sensitivity like with my leg...I would have pain but it was the same pain I had been experiencing for a long time: a joint/muscular type pain. A few yrs ago I had a head CT and it showed a "partially empty sella"...yrs before that I was dx with hypothyroidism (long before my dx of sarcoid).....sure sounds like hypothalamus stuff r/t the sarcoid.Blessings,Beckytiodaat@... wrote: I find that any changes in the seasons is hard on me. My sarcoid-induced arthritis really goes nuts with barometric pressure changes. This last week my thumb on my left hand has gone back to being numb, except on the out-side of it. If I even touch that area even with my finger-- I am going thru the roof. I have a feeling that the myelin sheath has broken thru---- and that it's raw nerve ending there. Damn. I also find that hot weather wipes me out-- but come winter, I cna't tolerate the cold below 50 degrees. Funny thing is, if I put on my slippers because my feet are cold-- within minutes the burning sensation of each individual nerve is nuts. Go figure. From what I've been reading on NS and the hypothalmus and pituatary glands-- as well as the adrenal insufficiency from years of steroids--- it all makes sense- and if I can get the MD to step up- I do believe these are issues that will have answers. Take care, Tracie NS Co-owner/moderator Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2006 Report Share Posted October 10, 2006 I too find changes in the season are hard on me. The hot and humid weather can make me feel achy and blah. But as you said Tracie, as the temperature drops the physical pain increases all over. I also have emotional changes as winter comes too. The early darkness and the cold make me feel depressed and withdrawn which in turn makes me dwell on my physical pain which in turn makes me feel depressed and then turns into a viscious circle! Before I was diagnosed with sarcoid 4 years ago, I was 40 years old and was just being taught how to ski for the first time. I received a whole new ski package - skis, boots, etc. and lessons. I didn't care if it was cold or not. My kids thought it was a riot. "Old Mom was gonna ski" I was just getting the hang of it and really enjoyed it being able to spend time with them. Then I got sick. Now my skis are gathering dust on the rafters on the porch. I don't know if they will ever be used again. Who knows? One can only hope.Debbie T.Moderator tiodaat@... wrote: I find that any changes in the seasons is hard on me. My sarcoid-induced arthritis really goes nuts with barometric pressure changes. This last week my thumb on my left hand has gone back to being numb, except on the out-side of it. If I even touch that area even with my finger-- I am going thru the roof. I have a feeling that the myelin sheath has broken thru---- and that it's raw nerve ending there. Damn. I also find that hot weather wipes me out-- but come winter, I cna't tolerate the cold below 50 degrees. Funny thing is, if I put on my slippers because my feet are cold-- within minutes the burning sensation of each individual nerve is nuts. Go figure. From what I've been reading on NS and the hypothalmus and pituatary glands-- as well as the adrenal insufficiency from years of steroids--- it all makes sense- and if I can get the MD to step up- I do believe these are issues that will have answers. Take care, Tracie NS Co-owner/moderator Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2006 Report Share Posted October 11, 2006 Debbie T., Wow...I could easily have written...word for word...every word of the first two paragraphs of your post. The pain has come back with a vengance and it's more than I can wrap my mind around at times. I just lay in bed...covered up...resting, sleeping and achey and feel like crying. I had a few relatively good months and then this crap again. July and August weren't too bad for me. But now...SHIT....I hurt so bad. I'm upping my MSM and will probably have to see the doc again. Who wants to join the....'I'm so sick of this crap club ?!!?'..... LET'S ALL HOPE OUR BODIES READJUST SOON. HUGS mARY s.Debbie wrote: I too find changes in the season are hard on me. The hot and humid weather can make me feel achy and blah. But as you said Tracie, as the temperature drops the physical pain increases all over. I also have emotional changes as winter comes too. The early darkness and the cold make me feel depressed and withdrawn which in turn makes me dwell on my physical pain which in turn makes me feel depressed and then turns into a viscious circle! Before I was diagnosed with sarcoid 4 years ago, I was 40 years old and was just being taught how to ski for the first time. I received a whole new ski package - skis, boots, etc. and lessons. I didn't care if it was cold or not. My kids thought it was a riot. "Old Mom was gonna ski" I was just getting the hang of it and really enjoyed it being able to spend time with them. Then I got sick. Now my skis are gathering dust on the rafters on the porch. I don't know if they will ever be used again. Who knows? One can only hope.Debbie T.Moderator tiodaat (AT) aol (DOT) com wrote: I find that any changes in the seasons is hard on me. My sarcoid-induced arthritis really goes nuts with barometric pressure changes.This last week my thumb on my left hand has gone back to being numb, except on the out-side of it. If I even touch that area even with my finger-- I am going thru the roof. I have a feeling that the myelin sheath has broken thru---- and that it's raw nerve ending there. Damn.I also find that hot weather wipes me out-- but come winter, I cna't tolerate the cold below 50 degrees. Funny thing is, if I put on my slippers because my feet are cold-- within minutes the burning sensation of each individual nerve is nuts. Go figure. From what I've been reading on NS and the hypothalmus and pituatary glands-- as well as the adrenal insufficiency from years of steroids--- it all makes sense- and if I can get the MD to step up- I do believe these are issues that will have answers.Take care,TracieNS Co-owner/moderator Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2006 Report Share Posted October 28, 2006 Debbie, I live in Colorado and use to ski all the time with the family too, now even though I live at 5000 ft. when we go up into the mts. About all I do is sleep while the family ski’s. I too can’t take this cold, I hurt all over to with the cold weather! Marl a From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Tuesday, October 10, 2006 4:31 PM To: Neurosarcoidosis Subject: Re: Seasonal flares I too find changes in the season are hard on me. The hot and humid weather can make me feel achy and blah. But as you said Tracie, as the temperature drops the physical pain increases all over. I also have emotional changes as winter comes too. The early darkness and the cold make me feel depressed and withdrawn which in turn makes me dwell on my physical pain which in turn makes me feel depressed and then turns into a viscious circle! Before I was diagnosed with sarcoid 4 years ago, I was 40 years old and was just being taught how to ski for the first time. I received a whole new ski package - skis, boots, etc. and lessons. I didn't care if it was cold or not. My kids thought it was a riot. " Old Mom was gonna ski " I was just getting the hang of it and really enjoyed it being able to spend time with them. Then I got sick. Now my skis are gathering dust on the rafters on the porch. I don't know if they will ever be used again. Who knows? One can only hope. Debbie T. Moderator tiodaat (AT) aol (DOT) com wrote: I find that any changes in the seasons is hard on me. My sarcoid-induced arthritis really goes nuts with barometric pressure changes. This last week my thumb on my left hand has gone back to being numb, except on the out-side of it. If I even touch that area even with my finger-- I am going thru the roof. I have a feeling that the myelin sheath has broken thru---- and that it's raw nerve ending there. Damn. I also find that hot weather wipes me out-- but come winter, I cna't tolerate the cold below 50 degrees. Funny thing is, if I put on my slippers because my feet are cold-- within minutes the burning sensation of each individual nerve is nuts. Go figure. From what I've been reading on NS and the hypothalmus and pituatary glands-- as well as the adrenal insufficiency from years of steroids--- it all makes sense- and if I can get the MD to step up- I do believe these are issues that will have answers. Take care, Tracie NS Co-owner/moderator Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 Really hot weather makes me sick and achy (and swell). Tracie, you said something that made me think: sometimes when my left leg/foot hurts to an almost unbearable degree, it even hurts to have my clothes touch my skin in that area. It's a "deep inside" achiness that will bring me to tears. Doesn't affect both legs, just the left one so my pcp said couldn't be restless leg syndrome. I know it has something to do with the sarcoid and nerve involvement. My left side is affected in many ways: leg/foot pain/jerkiness, ocular, subq nodules in thigh, breast mass. I do have the bilateral lung involvement, cardiac, skin, a sarcoid liver lesion, and pain in my right side too (joints) but just not as bad with the pain as my left leg. Since this all came out of nowhere like a burgler in the night I can only hope that it slips right back out the same door...no good-byes necessary, just leave enough of me to be able to move on. No invite, no key, how rude! Every new obstacle I will fight with all my strength. Even in my darkest nights I will remember I am not alone. That will get me through to another day and another chance to be a better person in this world. Then a peace settles in over me and I am reminded yet again that I do not walk alone.Blessings,BeckyMarla Bramer wrote: Debbie, I live in Colorado and use to ski all the time with the family too, now even though I live at 5000 ft. when we go up into the mts. About all I do is sleep while the family ski’s. I too can’t take this cold, I hurt all over to with the cold weather! Marl a From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Tuesday, October 10, 2006 4:31 PM To: Neurosarcoidosis Subject: Re: Seasonal flares I too find changes in the season are hard on me. The hot and humid weather can make me feel achy and blah. But as you said Tracie, as the temperature drops the physical pain increases all over. I also have emotional changes as winter comes too. The early darkness and the cold make me feel depressed and withdrawn which in turn makes me dwell on my physical pain which in turn makes me feel depressed and then turns into a viscious circle! Before I was diagnosed with sarcoid 4 years ago, I was 40 years old and was just being taught how to ski for the first time. I received a whole new ski package - skis, boots, etc. and lessons. I didn't care if it was cold or not. My kids thought it was a riot. "Old Mom was gonna ski" I was just getting the hang of it and really enjoyed it being able to spend time with them. Then I got sick. Now my skis are gathering dust on the rafters on the porch. I don't know if they will ever be used again. Who knows? One can only hope. Debbie T. Moderator tiodaat (AT) aol (DOT) com wrote: I find that any changes in the seasons is hard on me. My sarcoid-induced arthritis really goes nuts with barometric pressure changes. This last week my thumb on my left hand has gone back to being numb, except on the out-side of it. If I even touch that area even with my finger-- I am going thru the roof. I have a feeling that the myelin sheath has broken thru---- and that it's raw nerve ending there. Damn. I also find that hot weather wipes me out-- but come winter, I cna't tolerate the cold below 50 degrees. Funny thing is, if I put on my slippers because my feet are cold-- within minutes the burning sensation of each individual nerve is nuts. Go figure. From what I've been reading on NS and the hypothalmus and pituatary glands-- as well as the adrenal insufficiency from years of steroids--- it all makes sense- and if I can get the MD to step up- I do believe these are issues that will have answers. Take care, Tracie NS Co-owner/moderator Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Get your email and see which of your friends are online - Right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2006 Report Share Posted October 29, 2006 Hi, Sorry to jump in like this but Marla & Tracie, your e-mails reminded me of both, the swelling summers and the chilly winter zooming in on us here in Washington state. I swell during the hot months (ankles, legs, hands, etc.) but in the winter when it is cold I hate wearing the extra stuff. Hats, coats, gloves drives me up the wall. I think it is the pressure against the skin that does it. At least in the summer there are light weight clothes to wear. Hope you enjoy your Sunday. ClareMac Tosh wrote: Really hot weather makes me sick and achy (and swell). Tracie, you said something that made me think: sometimes when my left leg/foot hurts to an almost unbearable degree, it even hurts to have my clothes touch my skin in that area. It's a "deep inside" achiness that will bring me to tears. Doesn't affect both legs, just the left one so my pcp said couldn't be restless leg syndrome. I know it has something to do with the sarcoid and nerve involvement. My left side is affected in many ways: leg/foot pain/jerkiness, ocular, subq nodules in thigh, breast mass. I do have the bilateral lung involvement, cardiac, skin, a sarcoid liver lesion, and pain in my right side too (joints) but just not as bad with the pain as my left leg. Since this all came out of nowhere like a burgler in the night I can only hope that it slips right back out the same door...no good-byes necessary, just leave enough of me to be able to move on. No invite, no key, how rude! Every new obstacle I will fight with all my strength. Even in my darkest nights I will remember I am not alone. That will get me through to another day and another chance to be a better person in this world. Then a peace settles in over me and I am reminded yet again that I do not walk alone.Blessings,BeckyMarla Bramer <mebramer (AT) gmail (DOT) com> wrote: Debbie, I live in Colorado and use to ski all the time with the family too, now even though I live at 5000 ft. when we go up into the mts. About all I do is sleep while the family ski’s. I too can’t take this cold, I hurt all over to with the cold weather! Marl a From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Tuesday, October 10, 2006 4:31 PMTo: Neurosarcoidosis Subject: Re: Seasonal flares I too find changes in the season are hard on me. The hot and humid weather can make me feel achy and blah. But as you said Tracie, as the temperature drops the physical pain increases all over. I also have emotional changes as winter comes too. The early darkness and the cold make me feel depressed and withdrawn which in turn makes me dwell on my physical pain which in turn makes me feel depressed and then turns into a viscious circle! Before I was diagnosed with sarcoid 4 years ago, I was 40 years old and was just being taught how to ski for the first time. I received a whole new ski package - skis, boots, etc. and lessons. I didn't care if it was cold or not. My kids thought it was a riot. "Old Mom was gonna ski" I was just getting the hang of it and really enjoyed it being able to spend time with them. Then I got sick. Now my skis are gathering dust on the rafters on the porch. I don't know if they will ever be used again. Who knows? One can only hope.Debbie T.Moderator tiodaat (AT) aol (DOT) com wrote: I find that any changes in the seasons is hard on me. My sarcoid-induced arthritis really goes nuts with barometric pressure changes.This last week my thumb on my left hand has gone back to being numb, except on the out-side of it. If I even touch that area even with my finger-- I am going thru the roof. I have a feeling that the myelin sheath has broken thru---- and that it's raw nerve ending there. Damn.I also find that hot weather wipes me out-- but come winter, I cna't tolerate the cold below 50 degrees. Funny thing is, if I put on my slippers because my feet are cold-- within minutes the burning sensation of each individual nerve is nuts. Go figure. From what I've been reading on NS and the hypothalmus and pituatary glands-- as well as the adrenal insufficiency from years of steroids--- it all makes sense- and if I can get the MD to step up- I do believe these are issues that will have answers.Take care,TracieNS Co-owner/moderator Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Get your email and see which of your friends are online - Right on the new Yahoo.com Everyone is raving about the all-new Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2006 Report Share Posted November 2, 2006 I know Marla , I would do the same thing . Either sleep or read tons of books.My kids would be in seventh heaven skiing in the Colorada mountains! LOLMarla Bramer wrote: Debbie, I live in Colorado and use to ski all the time with the family too, now even though I live at 5000 ft. when we go up into the mts. About all I do is sleep while the family ski’s. I too can’t take this cold, I hurt all over to with the cold weather! Marl a From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Debbie Sent: Tuesday, October 10, 2006 4:31 PM To: Neurosarcoidosis Subject: Re: Seasonal flares I too find changes in the season are hard on me. The hot and humid weather can make me feel achy and blah. But as you said Tracie, as the temperature drops the physical pain increases all over. I also have emotional changes as winter comes too. The early darkness and the cold make me feel depressed and withdrawn which in turn makes me dwell on my physical pain which in turn makes me feel depressed and then turns into a viscious circle! Before I was diagnosed with sarcoid 4 years ago, I was 40 years old and was just being taught how to ski for the first time. I received a whole new ski package - skis, boots, etc. and lessons. I didn't care if it was cold or not. My kids thought it was a riot. "Old Mom was gonna ski" I was just getting the hang of it and really enjoyed it being able to spend time with them. Then I got sick. Now my skis are gathering dust on the rafters on the porch. I don't know if they will ever be used again. Who knows? One can only hope. Debbie T. Moderator tiodaat (AT) aol (DOT) com wrote: I find that any changes in the seasons is hard on me. My sarcoid-induced arthritis really goes nuts with barometric pressure changes. This last week my thumb on my left hand has gone back to being numb, except on the out-side of it. If I even touch that area even with my finger-- I am going thru the roof. I have a feeling that the myelin sheath has broken thru---- and that it's raw nerve ending there. Damn. I also find that hot weather wipes me out-- but come winter, I cna't tolerate the cold below 50 degrees. Funny thing is, if I put on my slippers because my feet are cold-- within minutes the burning sensation of each individual nerve is nuts. Go figure. From what I've been reading on NS and the hypothalmus and pituatary glands-- as well as the adrenal insufficiency from years of steroids--- it all makes sense- and if I can get the MD to step up- I do believe these are issues that will have answers. Take care, Tracie NS Co-owner/moderator Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Low, Low, Low Rates! Check out Yahoo! Messenger's cheap PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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