Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 Hi, They dxed my sarc the first time due to my saliva glands. I didn't have any saliva and my glands swelled up. I was in the ENt ward for 3 weeks. They were hard as a rock and finally after not knowing what to do, they wanted to take a bniopsy of the cheek which really scared me. The day before, a dr. that had just come back from specializing in the u.s. heard about my case and came over to me and said that he knows what's wrong andf not to do the biop. He said if i agree, he'll do one in my lungs and will help me. Of course I agreed. He was the one who knew what lung sarc is. The whole hospital it seems did not know a thing about it. I also have real bad leg pain when it gets real cold, as if it's in my bone. I also had the crawley feeling as if ants were all iover my face. My neuro just didn't pay attention and said live with it! Pomy To: Neurosarcoidosis From: mary_s777@...Date: Thu, 28 Feb 2008 10:09:49 -0800Subject: Re: seizures Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Looking for last minute shopping deals? Find them fast with Yahoo! Search. Express yourself instantly with MSN Messenger! MSN Messenger Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 Hi Pomy, I had it when they say just live with it, I get real deep pain in my legs too, my doc says he's sure it's the sarc just not sure if it's neuro or bone, then my neurologist suggested because it's a burning pain probably neuro. I get the crawly feeling all over too, sometimes i feel like I have something there that I can't get off, it'll drive me crazy sometimes, again the neuro said it's the sarc coming from the nerve ends, not fun. I also have restless leg syndrome, that feels that way too, only my legs do jump. I take something that really helps the legs, but doesn't help the other nerve feelings. so many drugs, lol Marl a Hi, They dxed my sarc the first time due to my saliva glands. I didn't have any saliva and my glands swelled up. I was in the ENt ward for 3 weeks. They were hard as a rock and finally after not knowing what to do, they wanted to take a bniopsy of the cheek which really scared me. The day before, a dr. that had just come back from specializing in the u.s. heard about my case and came over to me and said that he knows what's wrong andf not to do the biop. He said if i agree, he'll do one in my lungs and will help me. Of course I agreed. He was the one who knew what lung sarc is. The whole hospital it seems did not know a thing about it. I also have real bad leg pain when it gets real cold, as if it's in my bone. I also had the crawley feeling as if ants were all iover my face. My neuro just didn't pay attention and said live with it! Pomy To: Neurosarcoidosis From: mary_s777@...Date: Thu, 28 Feb 2008 10:09:49 -0800 Subject: Re: seizures Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums, face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back up to my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn't working? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). Looking for last minute shopping deals? Find them fast with Yahoo! Search. Express yourself instantly with MSN Messenger! MSN Messenger -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 Marla, I have the feeling that my lower legs and feet are in a fire ant bed and I'm being bitten. I couldn't sleep when they would do this and nothing helped, then my doctor put me on Lyrica due to trigeminal neuralgia but it also stopped the terrible stinging and itchy feeling in my legs and feet. Alot of doctors are using Lyrica now for neuropathy and nerve types of pain, it really works. Maybe this will help....ConnieMarla Bramer wrote: Hi Pomy, I had it when they say just live with it, I get real deep pain in my legs too, my doc says he's sure it's the sarc just not sure if it's neuro or bone, then my neurologist suggested because it's a burning pain probably neuro. I get the crawly feeling all over too, sometimes i feel like I have something there that I can't get off, it'll drive me crazy sometimes, again the neuro said it's the sarc coming from the nerve ends, not fun. I also have restless leg syndrome, that feels that way too, only my legs do jump. I take something that really helps the legs, but doesn't help the other nerve feelings. so many drugs, lol Marl a On Mon, Mar 3, 2008 at 11:53 AM, Moish Pomeranc <moishpomeranc (AT) hotmail (DOT) com> wrote: Hi, They dxed my sarc the first time due to my saliva glands. I didn't have any saliva and my glands swelled up. I was in the ENt ward for 3 weeks. They were hard as a rock and finally after not knowing what to do, they wanted to take a bniopsy of the cheek which really scared me. The day before, a dr. that had just come back from specializing in the u.s. heard about my case and came over to me and said that he knows what's wrong andf not to do the biop. He said if i agree, he'll do one in my lungs and will help me. Of course I agreed. He was the one who knew what lung sarc is. The whole hospital it seems did not know a thing about it. I also have real bad leg pain when it gets real cold, as if it's in my bone. I also had the crawley feeling as if ants were all iover my face. My neuro just didn't pay attention and said live with it!Pomy To: Neurosarcoidosis From: mary_s777 (AT) yahoo (DOT) comDate: Thu, 28 Feb 2008 10:09:49 -0800Subject: Re: seizures Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer <mebramer (AT) gmail (DOT) com> wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla On Thu, Feb 28, 2008 at 6:23 PM, wendy_cidp <wendy_cidp (AT) yahoo (DOT) ca> wrote: Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to seethe GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Whytake Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer 29:11, For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV). Looking for last minute shopping deals? Find them fast with Yahoo! Search. Express yourself instantly with MSN Messenger! MSN Messenger -- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay.com/mbramer Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2008 Report Share Posted March 3, 2008 Hi Connie, My legs use to do that, they don't anymore, but I am Lyrica for the deep pain in my legs, which must be nerve because of this medication, it has helped me on many symptoms, it really is a good drug. Marla Marla, I have the feeling that my lower legs and feet are in a fire ant bed and I'm being bitten. I couldn't sleep when they would do this and nothing helped, then my doctor put me on Lyrica due to trigeminal neuralgia but it also stopped the terrible stinging and itchy feeling in my legs and feet. Alot of doctors are using Lyrica now for neuropathy and nerve types of pain, it really works. Maybe this will help....Connie Marla Bramer wrote: Hi Pomy, I had it when they say just live with it, I get real deep pain in my legs too, my doc says he's sure it's the sarc just not sure if it's neuro or bone, then my neurologist suggested because it's a burning pain probably neuro. I get the crawly feeling all over too, sometimes i feel like I have something there that I can't get off, it'll drive me crazy sometimes, again the neuro said it's the sarc coming from the nerve ends, not fun. I also have restless leg syndrome, that feels that way too, only my legs do jump. I take something that really helps the legs, but doesn't help the other nerve feelings. so many drugs, lol Marl a Hi, They dxed my sarc the first time due to my saliva glands. I didn't have any saliva and my glands swelled up. I was in the ENt ward for 3 weeks. They were hard as a rock and finally after not knowing what to do, they wanted to take a bniopsy of the cheek which really scared me. The day before, a dr. that had just come back from specializing in the u.s. heard about my case and came over to me and said that he knows what's wrong andf not to do the biop. He said if i agree, he'll do one in my lungs and will help me. Of course I agreed. He was the one who knew what lung sarc is. The whole hospital it seems did not know a thing about it. I also have real bad leg pain when it gets real cold, as if it's in my bone. I also had the crawley feeling as if ants were all iover my face. My neuro just didn't pay attention and said live with it!Pomy To: Neurosarcoidosis From: mary_s777@... Date: Thu, 28 Feb 2008 10:09:49 -0800Subject: Re: seizures Marla and , Just yesterday I posted to Tracie about my gum and salivary glad pain. It was unbelievable pain. Put me in bed for days on massive amounts of pain pills. It turned out that some of it was dry mouth probably from the sarc. I have also had ear pain, though not from infection, from thickened eustation tubes cause by sarc. I take a special nasal spray with steroids in it. I have a lot of scarring from previous ear infections or whatever they 'thought' they were treating me for in the past ever since being a small child. Either i can't hear people correctly or i turn the tv up too loud or suddenly everything puts me in sensory overload. I have also had dry eyes and got drops from the eye doctor. A lot of this is auto immune related from the sarc and they often just treat the symptoms. I've gone in with what i thought was teeth pain and it turned out to be sinuses(or so they think)or inflammed gums. I never knew the pain from that could be so bad. I have to say that was worse pain than I had from sciatica and that was really bad, too. Stress puts me over the edge every time. I get more of the creepy crawly feelings on my face...like there's something there and i wipe at it and there's never anything there. I get that on my face, arms and legs. You know I think a month in Hawaiii would be good for all of us, hey?.....lol. My doctor told me once that you can feel numb on the outside of your skin and feel pain deep within by the muscles, etc. I agree, Marla, that this COLD winter can bring on attacks, too, and also the extreme dryness of a prolonged winter can also bring on many unpleasant symptoms. All in all we are all ready for some of that green grass and blooms Tracie is talking about. Let's all pray in agreement for the winter to END now. The farmers must have enough snow for the melt off for their crops by now, right?.....lol. I need to go to bed cuz I've been up for 20 hours and I'm getting loopy. Hang in there and take a step back and think over your options. we're here for you. hugs Marla Bramer wrote: I'm sorry to hear this , hopefully the Remicade will start helping your symptoms, how long have you been on it. I get those same sx's you are talking about, the whole left side of my face is numb almost all the time, and then I get the pain from time to time, really bad pain, face teeth, ear, I've never had ear aches in my life, but this is the worse ear pain, I just had a bad attack on Monday, when it got cold here and snowed I find that does trigger an attack, was in bed most of the day. I hope you get to feeling better soon, I am still in the appeal process with my insurance company over Remicade, we have a hearing date on March 12. sending you blessings for your day, Marla Yesterday was my third day on a half mg taper off Prednisone. I nowtake 11 and a half mg every other day. For the first time I developedseizures. I also began to suffer from the usual cranial neuropathysymptoms -- numb face, tongue, teeth, scalp & lots of pain in my gums,face and ear. Anybody else get these symptoms? Don't really understandhow I can be numb and in pain at the same time? I am going in to see the GP today, but don't have much hope of any real info. Went back upto my previous dose of Pred. and began taking Tegretol again (hellofuzzy brain). Things are much better this morning but I am SOfrustrated. Taking Remicade was supposed to stop these flare-ups. Why take Remicade and possibly suffer the serious side-effects if it isn'tworking? Grrrrr. --- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer 29:11, For I know the plans I have for you, " declares the Lord, " plans to prosper you and not to harm you, plans to give you hope and a future. " If anyone would come after Me, he must deny himself " ( 16:24 NIV). Looking for last minute shopping deals? Find them fast with Yahoo! Search. Express yourself instantly with MSN Messenger! MSN Messenger -- Marla BramerIndependent Beauty Consultant Kay mbramer@... www.marykay.com/mbramer Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. -- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer Quote Link to comment Share on other sites More sharing options...
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