Guest guest Posted December 1, 2010 Report Share Posted December 1, 2010 La, I know that several of us have this lovely problem. It's been happening to me for probably 7-8 years. Any exertion (like putting on my sox) will increase the flushing & perspiring, but I can also be just sitting reading or watching TV & I feel my cheeks getting hot. It feels like a sunburn. Sometimes it's so hot I have to rub ice cubes on my face or often in restaurants I'll hold cold drinks glasses against my cheeks. Nobody has a definite answer; the assumption seems to be that my hypothalamus was damaged by the sarc, so that my thermostat is busted. Interestingly, my psychiatrist recently wondered if I might be experiencing serotonin syndrome, which is a reaction between the SSRI group of antidepressants (Prozac, Paxil, etc.) and other drugs. In my case, he looked at the Klonopin I take for PMLD (Periodic Limb Movement Disorder; a neurological disorder similar to Restless Legs) and Ritalin that I take basically to stay awake. We decided to switch my antidepressant from Effexor to Welbutrin, which is not prone to causing serotonin syndrome. Since the switch, my daughters & I all think that the flushing has improved; could be a placebo effect, but I'll take it. The cooler weather shouldn't be a factor, as winter has it's own problems--like the crazy people who heat their houses & stores! Anyway, I'll attach a photo of myself a few years ago with ice bags attached to my face with my bra! If you can't open it, it's in the Rose's World album in Photos on the NS website. You can find the website at the bottom of all group messages, including this one. Click on the archives or members database. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: ladyt19119@...Date: Wed, 1 Dec 2010 22:16:53 -0800Subject: Re: Another Health/Disease Related Question I am sorry I have so many questions everyone. I am just trying to get a handle on this. My cheeks are always getting hot and flushed and red. Is that normal for the disease? I know that is a symptom of Lupus. But can this also occur for Sarc patients as well? To: Neurosarcoidosis Sent: Thu, December 2, 2010 12:43:59 AMSubject: Re: Disability La, You are in a very difficult time of the disease process, and all your feelings are very common. I also believe that just about everyone gets denied the first time. I am one very blessed women, My Husband takes good care of me, I don't have to work, but since I've worked all my life, it's hard for me to do nothing, since I left Nursing (Labor and delivery) I've tired teaching at the community college, and that got to be too much for me. I've been selling Kay Cosmetics since I left too, and I love that, and wanted to go up the ranks and become a Director, and after 7 years, I realized I just don't have the energy it takes to do that either, I do some home health for a small company, I do there certifications for there home care providers, and some teaching, it's less then a 1/4 time job. My husband just started a new business and I try to help him out too. I guess what I'm saying is, it's just plain hard to know what to do, try and work again? or try for Disability again? I still keep thinking I should be working more, try the hospital again, then look for what jobs they have, as there's always nursing positions posted, then see 12 hour shift, there's NO Way I could do that, so I let it go for awhile.What ever you decide will be the right thing for you, I will keep you in my prayers, and hope God will guide you. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. 1 of 1 Photo(s) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 First, Do Not be sorry, that is what we all are here for, as this disease effects everyone different. and Yes this is a common symptom, I have it almost all the time now, especially when I'm tired. I was told once by a specialist in a University Hospital that having Neurosarcoidosis, is like having Lupus, MS and cancer and there is No cure for it, I think she hit it right on the nose, I had a local Dermatologist try and tell me I had Lupus once, in the end she agreed it was just part of Sarcoid. Please feel free to ask away, and never ever feel sorry, or bad about it, we are here for you:) MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) I am sorry I have so many questions everyone. I am just trying to get a handle on this. My cheeks are always getting hot and flushed and red. Is that normal for the disease? I know that is a symptom of Lupus. But can this also occur for Sarc patients as well? To: Neurosarcoidosis Sent: Thu, December 2, 2010 12:43:59 AMSubject: Re: Disability La, You are in a very difficult time of the disease process, and all your feelings are very common. I also believe that just about everyone gets denied the first time. I am one very blessed women, My Husband takes good care of me, I don't have to work, but since I've worked all my life, it's hard for me to do nothing, since I left Nursing (Labor and delivery) I've tired teaching at the community college, and that got to be too much for me. I've been selling Kay Cosmetics since I left too, and I love that, and wanted to go up the ranks and become a Director, and after 7 years, I realized I just don't have the energy it takes to do that either, I do some home health for a small company, I do there certifications for there home care providers, and some teaching, it's less then a 1/4 time job. My husband just started a new business and I try to help him out too. I guess what I'm saying is, it's just plain hard to know what to do, try and work again? or try for Disability again? I still keep thinking I should be working more, try the hospital again, then look for what jobs they have, as there's always nursing positions posted, then see 12 hour shift, there's NO Way I could do that, so I let it go for awhile. What ever you decide will be the right thing for you, I will keep you in my prayers, and hope God will guide you. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 I have had this problem with flushing in the butterfly rash pattern of Lupus for most of my adult life. My immunologist still looks at it every time I go and thinks Lupus not Sarcoidosis. I also have red hair and always thought it was a red-head thing before I heard people on this list describe it I have also had intense sensitivity to sun and heat since I was an infant. Go figure! Vivien Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 I too have intense sensitivity to heat and the sun. When I am in the sun for a long time I get extremely fatigue and my cheeks get really hot and turn red. My dr thought it was Lupus as well but none of my blood test came out positive. So they leaned more towards Sarc because of the hi sed rate of 150, the inflammation in my eyes and brain and the CSF spinal fluid build up. How long has anyone lived with a shunt? I have only had mine since March. I am always worried that it is working properly. Does anyone know what happens if it stops working correctly? The bottom of my feet have been hurting. What is that about? To: Neurosarcoidosis Sent: Thu, December 2, 2010 11:32:11 AMSubject: Re: Re: Another Health/Disease Related Question I have had this problem with flushing in the butterfly rash pattern of Lupus for most of my adult life. My immunologist still looks at it every time I go and thinks Lupus not Sarcoidosis. I also have red hair and always thought it was a red-head thing before I heard people on this list describe it I have also had intense sensitivity to sun and heat since I was an infant. Go figure! Vivien Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 Thank you so much. It has been a pleasure sharing with all of you and everyone understands what I am talking about. When I tell my family (when they ask how I feel) how I feel, they look at me confused and strange. They do not understand how I feel and what I am experiencing. It is so frustrating. But when I talk to everyone here, you get me. Thanks Not having a good day today. Extremely fatigue and my legs and feet hurt. I have been lowering my dosage of prednisone every ten days. I am now at 35 mg. Could my body be getting used to the meds because the fatigue and pain are coming back. Does this happen sometimes? To: Neurosarcoidosis Sent: Thu, December 2, 2010 10:10:22 AMSubject: Re: Re: Another Health/Disease Related Question First, Do Not be sorry, that is what we all are here for, as this disease effects everyone different. and Yes this is a common symptom, I have it almost all the time now, especially when I'm tired. I was told once by a specialist in a University Hospital that having Neurosarcoidosis, is like having Lupus, MS and cancer and there is No cure for it, I think she hit it right on the nose, I had a local Dermatologist try and tell me I had Lupus once, in the end she agreed it was just part of Sarcoid. Please feel free to ask away, and never ever feel sorry, or bad about it, we are here for you:) MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) I am sorry I have so many questions everyone. I am just trying to get a handle on this. My cheeks are always getting hot and flushed and red. Is that normal for the disease? I know that is a symptom of Lupus. But can this also occur for Sarc patients as well? To: Neurosarcoidosis Sent: Thu, December 2, 2010 12:43:59 AMSubject: Re: Disability La, You are in a very difficult time of the disease process, and all your feelings are very common. I also believe that just about everyone gets denied the first time. I am one very blessed women, My Husband takes good care of me, I don't have to work, but since I've worked all my life, it's hard for me to do nothing, since I left Nursing (Labor and delivery) I've tired teaching at the community college, and that got to be too much for me. I've been selling Kay Cosmetics since I left too, and I love that, and wanted to go up the ranks and become a Director, and after 7 years, I realized I just don't have the energy it takes to do that either, I do some home health for a small company, I do there certifications for there home care providers, and some teaching, it's less then a 1/4 time job. My husband just started a new business and I try to help him out too. I guess what I'm saying is, it's just plain hard to know what to do, try and work again? or try for Disability again? I still keep thinking I should be working more, try the hospital again, then look for what jobs they have, as there's always nursing positions posted, then see 12 hour shift, there's NO Way I could do that, so I let it go for awhile.What ever you decide will be the right thing for you, I will keep you in my prayers, and hope God will guide you. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:) Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2010 Report Share Posted December 2, 2010 The bottoms of my feet hurt all the time too, I've had it for years. I gather it's a type of neuropathic pain. I've started on Lyrica and that seems to be helping, my foot pain levels are now more like 2/10, rather than 7-9 out of 10, quite bearable - it took a good 10 days to adjust to the Lyrica, though, I nearly gave up, I felt like such a zombie initially! Cheers, .................................................................................\ ........................ http://sutherland-studios.com.au Dummies author : http://tinyurl.com/CodesandCryptograms http://tinyurl.com/WordSearches .................................................................................\ ........................ > > I too have intense sensitivity to heat and the sun. When I am in the sun for a long time I get extremely fatigue and my cheeks get really hot and turn red. My dr thought it was Lupus as well but none of my blood test came out positive. So they leaned more towards Sarc because of the hi sed rate of 150, the inflammation in my eyes and brain and the CSF spinal fluid build up. > > How long has anyone lived with a shunt? I have only had mine since March. I am always worried that it is working properly. Does anyone know what happens if it stops working correctly? > > The bottom of my feet have been hurting. What is that about? > > > To: Neurosarcoidosis > Sent: Thu, December 2, 2010 11:32:11 AM > Subject: Re: Re: Another Health/Disease Related Question > > > I have had this problem with flushing in the butterfly rash pattern of Lupus for most of my adult life. My immunologist still looks at it every time I go and thinks Lupus not Sarcoidosis. I also have red hair and always thought it was a red-head thing before I heard people on this list describe it I have also had intense sensitivity to sun and heat since I was an infant. Go figure! > > Vivien > > > > Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 I've had this also as well as swelling in the feet and ankles. I take Cymbalta but not Lyrica. However, in September I stopped Crestor (cholesterol drug) because I had a hunch. Foot pain and swelling reduced by 70% so far, other joint and muscle pain reduced by 50%, overall energy increased by at least 50% as well as clarity of thinking and other cognitive functions. The difference is PROFOUND. By husband and others are stunned by how much better I am. This drug was making me a nearly bed-ridden. I feel SO much better and, looking back, I felt like I was being poisoned. As I said to my PCP, what good is a cholesterol of 92 if I cannot function at all! Just my experience. Your mileage may vary. Vivien > > Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here.> > > > > > > > > > > ------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis Community 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 December 3, 2010 Report Share Posted December 3, 2010 Latanya,Many of us have pain in our feet, as well as burning in other parts of the body. I have neuralgia pretty bad all over, but sometimes it gets so bad in my feet that I have to put three pairs of socks on just to walk around in my slippers.Medication is different for everyone, but I think many of us take Neurontin or Lyrica for these problems.To: Neurosarcoidosis Sent: Thu, December 2, 2010 6:36:40 PMSubject: Re: Re: Another Health/Disease Related Question I too have intense sensitivity to heat and the sun. When I am in the sun for a long time I get extremely fatigue and my cheeks get really hot and turn red. My dr thought it was Lupus as well but none of my blood test came out positive. So they leaned more towards Sarc because of the hi sed rate of 150, the inflammation in my eyes and brain and the CSF spinal fluid build up. How long has anyone lived with a shunt? I have only had mine since March. I am always worried that it is working properly. Does anyone know what happens if it stops working correctly? The bottom of my feet have been hurting. What is that about? To: Neurosarcoidosis Sent: Thu, December 2, 2010 11:32:11 AMSubject: Re: Re: Another Health/Disease Related Question I have had this problem with flushing in the butterfly rash pattern of Lupus for most of my adult life. My immunologist still looks at it every time I go and thinks Lupus not Sarcoidosis. I also have red hair and always thought it was a red-head thing before I heard people on this list describe it I have also had intense sensitivity to sun and heat since I was an infant. Go figure! Vivien Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 Thank you. I will mention this to the doctor. I am so glad you all understand. To: Neurosarcoidosis Sent: Fri, December 3, 2010 7:47:42 PMSubject: Re: Re: Another Health/Disease Related Question Latanya,Many of us have pain in our feet, as well as burning in other parts of the body. I have neuralgia pretty bad all over, but sometimes it gets so bad in my feet that I have to put three pairs of socks on just to walk around in my slippers.Medication is different for everyone, but I think many of us take Neurontin or Lyrica for these problems. To: Neurosarcoidosis Sent: Thu, December 2, 2010 6:36:40 PMSubject: Re: Re: Another Health/Disease Related Question I too have intense sensitivity to heat and the sun. When I am in the sun for a long time I get extremely fatigue and my cheeks get really hot and turn red. My dr thought it was Lupus as well but none of my blood test came out positive. So they leaned more towards Sarc because of the hi sed rate of 150, the inflammation in my eyes and brain and the CSF spinal fluid build up. How long has anyone lived with a shunt? I have only had mine since March. I am always worried that it is working properly. Does anyone know what happens if it stops working correctly? The bottom of my feet have been hurting. What is that about? To: Neurosarcoidosis Sent: Thu, December 2, 2010 11:32:11 AMSubject: Re: Re: Another Health/Disease Related Question I have had this problem with flushing in the butterfly rash pattern of Lupus for most of my adult life. My immunologist still looks at it every time I go and thinks Lupus not Sarcoidosis. I also have red hair and always thought it was a red-head thing before I heard people on this list describe it I have also had intense sensitivity to sun and heat since I was an infant. Go figure! Vivien Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2010 Report Share Posted December 3, 2010 Wow. I feel so much better. Sometimes the symptoms make me feel like I am loosing it. My grandmother was Irish and Black and my hair turns red in the sun. My family always teases me and says that its the Irish coming out in me ( I am Black). I kept mentioning this to my rheumatologist and she keeps down playing it. But my cheeks get really red and hot when I am tired, or not feeling well, or been in the sun too long, or when I get excited or upset. I am not glad that some of you are going through the same things but it is surely reassuring that its not just me. To: Neurosarcoidosis Sent: Fri, December 3, 2010 4:24:43 PMSubject: Re: Another Health/Disease Related Question I get the redness and flushing very often, even when not on meds. I get it esp. when I am hot or overly fatigued or by too much neuro stimulation (ie. people). It can last for hours. Luckily the family now can see an outward sign of "Mom needs to go lie down and rest now she is over doing it, or we need to leave, Stacie is not well". In a weird way I am thankful there is some outward sign of this monster that rages inside.I was a red head too, before all my hair fell out and came back white and had this Irish red face symptom all my life, but it is a lot worse now since the sarc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2010 Report Share Posted December 4, 2010 Sounds good. Thanks Hope all is well. To: neurosarcoidosis Sent: Sat, December 4, 2010 9:33:38 PMSubject: RE: Re: Another Health/Disease Related Question La said: How long has anyone lived with a shunt? I have only had mine since March. I am always worried that it is working properly. Does anyone know what happens if it stops working correctly? I think that people can live indefinitely with a shunt; I've known a couple of folks who had shunts for 20+ years. As far as knowing if it's working correctly, I would assume that if it began to malfunction, you would notice a return of your original symptoms. I have heard of people getting the shunt revised or replaced. You need to address these concerns with the surgeon who placed the shunt; second choice would be your neurologist. Meanwhile, I'll look for some general info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2010 Report Share Posted December 4, 2010 La, feel free to download & print my photo with the famed "ice bra" and share it with your doctor. I'll attach it here, and it's also in the Rose's World album on the NS website. Just click on either the archives or members database link at the bottom of this & all other group messages; then click Photos & find the album. Many of us have individual/family albums; others are in the NS Family album. It's nice to put faces to names. And those of you who haven't posted photos of yourself, don't be shy! We are all beautiful, before, during or after Pred. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: ladyt19119@...Date: Fri, 3 Dec 2010 22:12:52 -0800Subject: Re: Re: Another Health/Disease Related Question Wow. I feel so much better. Sometimes the symptoms make me feel like I am loosing it. My grandmother was Irish and Black and my hair turns red in the sun. My family always teases me and says that its the Irish coming out in me ( I am Black). I kept mentioning this to my rheumatologist and she keeps down playing it. But my cheeks get really red and hot when I am tired, or not feeling well, or been in the sun too long, or when I get excited or upset. I am not glad that some of you are going through the same things but it is surely reassuring that its not just me. To: Neurosarcoidosis Sent: Fri, December 3, 2010 4:24:43 PMSubject: Re: Another Health/Disease Related Question I get the redness and flushing very often, even when not on meds. I get it esp. when I am hot or overly fatigued or by too much neuro stimulation (ie. people). It can last for hours. Luckily the family now can see an outward sign of "Mom needs to go lie down and rest now she is over doing it, or we need to leave, Stacie is not well". In a weird way I am thankful there is some outward sign of this monster that rages inside.I was a red head too, before all my hair fell out and came back white and had this Irish red face symptom all my life, but it is a lot worse now since the sarc. 1 of 1 Photo(s) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2010 Report Share Posted December 5, 2010 La, this was also in my drafts folder, so I don't know if I already sent it, but here it is, anyway! La, here is a pretty good website on VP shunts. It's directed toward kids with shunts, but has good into. http://www.divideclassic.org/Documents/ShuntInfo.htm Ramblin' RoseModerator It's not that life is so short-------It's that we wait so long to begin. (attributed to Wooden, among others) To: neurosarcoidosis From: mamadogrose@...Date: Sat, 4 Dec 2010 21:33:38 -0500Subject: RE: Re: Another Health/Disease Related Question La said: How long has anyone lived with a shunt? I have only had mine since March. I am always worried that it is working properly. Does anyone know what happens if it stops working correctly? I think that people can live indefinitely with a shunt; I've known a couple of folks who had shunts for 20+ years. As far as knowing if it's working correctly, I would assume that if it began to malfunction, you would notice a return of your original symptoms. I have heard of people getting the shunt revised or replaced. You need to address these concerns with the surgeon who placed the shunt; second choice would be your neurologist. Meanwhile, I'll look for some general info. Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22 To: Neurosarcoidosis From: ladyt19119@...Date: Thu, 2 Dec 2010 16:36:40 -0800Subject: Re: Re: Another Health/Disease Related Question I too have intense sensitivity to heat and the sun. When I am in the sun for a long time I get extremely fatigue and my cheeks get really hot and turn red. My dr thought it was Lupus as well but none of my blood test came out positive. So they leaned more towards Sarc because of the hi sed rate of 150, the inflammation in my eyes and brain and the CSF spinal fluid build up. How long has anyone lived with a shunt? I have only had mine since March. I am always worried that it is working properly. Does anyone know what happens if it stops working correctly? The bottom of my feet have been hurting. What is that about? To: Neurosarcoidosis Sent: Thu, December 2, 2010 11:32:11 AMSubject: Re: Re: Another Health/Disease Related Question I have had this problem with flushing in the butterfly rash pattern of Lupus for most of my adult life. My immunologist still looks at it every time I go and thinks Lupus not Sarcoidosis. I also have red hair and always thought it was a red-head thing before I heard people on this list describe it I have also had intense sensitivity to sun and heat since I was an infant. Go figure! Vivien Is anyone on disability or applied for disability? I have applied but of course was denied. In the process of appealing the decision. Should I keep trying or just try and go back to work. I fear going back to work because of the fatigue and the eye sight problems. I am torn as to what to do because I am only 36. I know none of you can make that decision for me. But I was curious how everyone else is dealing with sarc and working. I do not want to seem like I am using this as an excuse and not wanting to work but I have not gotten a handle on the disease yet and am still in the trial and error stage. I also fear if I go back to work and have to keep taking off for doctors appts and the remicade infusion drips that the my employer will not be as understanding and fire me. Then I will right back where I started. I just dont know what to do and where to go from here. Quote Link to comment Share on other sites More sharing options...
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