RE: Peripheral neuropathy

[Guest guest]

Thanks for the welcome Rose, and to comfort your memory, I kind of snuck in here so it is the first official welcome. I was a bit afraid to join, but given what's going on with my husband and family, I realize I need this group for my sarc stuff

Thanks for the camp stool idea; I will get one because I end up places where I need to put up my feet (elevation helps, and I have tremendous edema, too) and this is a practical, inexpensive and light solution.

I've developed some interesting positions at home, too!!

Thanks again; will join chat sometime soon but life a little busy here these days . . .

Cheers,

To: neurosarcoidosis From: mamadogrose@...Date: Fri, 6 May 2011 19:09:07 -0400Subject: Peripheral neuropathy

Hi, . I don't think I have welcomed you (wouldn't guarantee it; memory's in a sad state), but I know that others have. Sounds like you have been through the ringer in the short time since diagnosis. And a brain biopsy. Yikes. I can't imagine how scary that would be. I too have the peripheral neuropathy, much worse in the feet than in the hands. I have found that elevating my feet, even if it's only straight out, reduces the pain. I carry a 3-legged camp stool everywhere I go, so I can use it as a footstool. At home most of the time I raise my feet up much higher. In my recliner I use a partially-inflated exercise ball; works much better than a stack of pillows. For bed I've taken some foam rubber & rolled it up, then covered with a sheet. Most days by the time I go to bed I can't stand anything touching my feet, but I also have to keep them warm or the pain is worse. So I made a "tent" over my feet by bending a wire shelf (like a fridge shelf) into a U shape. I put that on top of the foam rubber & a couple of folded fleece blankets over it, then my covers! Looks mighty strange, but it works for me. I also have a couple of heated rice sox that I put in the little tent to warm it up & keep it warm. I also take Lyrica, but that alone wouldn't be enough. Keeping my feet up & warm makes a big difference. If I have to have my feet dependent (not walking, but just down, like driving) for more than 30 min. or so, they begin to feel huge & tight (feels like a tight b/p cuff), but there's no swelling. They also get more numb, even though they hurt more. It hurts to press on the gas & brake, yet I have a hard time knowing how hard I'm pressing. It feels like there are thick pieces of foam on the bottoms of my feet. It's a bizarre feeling. On the highway, if I don't use cruise control, I will realize that everyone is passing me & I'm only going 50 mph. That's why I don't drive anymore than necessary. So one thing about the sarc monster: it's brought out my creative side! Again, welcome to the group & I hope you can make it to the chatroom tonight. It's 9p EDT (NYC time). Watch for the reminder with the link. Oh, and I wanted to clarify a couple of the meds you mentioned, so no one gets confused. I'm a retired nurse & have trouble remembering the generic names. Remicade is infliximab; Azithioprine is Imuran.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Tue, 26 Apr 2011 21:01:22 +0000Subject: RE: New to Neurosarcoidocis

Good day: I, too, am relatively new to Neurosarc (diagnosis confirmed by brain biopsy on April 23 last year), with a fairly swift onset of multiple symptoms despite large doses of prednisone. I have been treated with Cyclopohsamide (cytoxan/chemo); aziathoprine (?) in hopes of being able to reduce the steroid and its side-effects but without success. I am currently on CellCept (it appears to be helpful, given reduced areas of inflammation in brain on most recent MRI) and am waiting to begin complementary treatment with Imuran (remicaide) -- hopefully in next couple of weeks!! (Just learned today Merck/Schering, the manufacturer has approved my case under compassionate access program; I live in the Niagara area of Ontario, Canada and this particular "off-book" use is not approved by Health Canada so no private or public drug benefit program will give approval for or cover cost of these treatments . . .However, to 's issue/question, and the reason I am weighing in today: I, too, have incredible tingling/peripheral neuropathy, as well as trigemenal nerve involvement. I have found success with Gabapentin; this reduces the tingling and pain, but I have not experienced the side effects I did with Lyrica (tried two nights and had horrible dreams) . .. The Gabapentin also helps with the burning. I know it makes a difference because I have missed doses on occasion; despite relatively severe symptoms I am still taking a relatively low dose; do have some room to "grow" if necessary. I am also on hydromorphone (time release) for pain but the neuropathy is a separate issue, as most of you probably understand . .. Hope this helps, and all the best to everyone in this group.--the Canuck!

To: Neurosarcoidosis From: mebramer@...Date: Tue, 26 Apr 2011 11:21:30 -0600Subject: Re: New to Neurosarcoidocis

Hi , Welcome, I'm sorry you had to find us, but there is a lot of information from many wonderful, caring, people here that have been through many things. I use to have the tingling and pins and needles feeling, esp my left side, now I just have a numb feeling, every once in awhile if I forget I'm sitting on my left leg, it will tingle, with needles for a few minutes, then it goes back to being numb. I am numb from the top of my head, left side all the way down to my toes, it's a strange feeling, but better then the tingling, pins and needles feeling, can't say I remember if one med took it away, or it just progressed to that point, I think it was not helped at the time with any meds. I've taken several different meds for the nerve pain, which is not the needles and pins, it's more intense burning like pain, and that was helped first with neurontin, then Lyrica, and now on Cymbalta, not on all, just the Cymbalta right now. feel more numbness with it, but less pain, I'll take numbness over pain any day. Hope this was helpful, but probably not, hope someone else has better info for you. feel free to ask any questions. Were here to help. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

After suffering for some time with so many different symptoms my husband finally got diagnosed with neurosarcoidocis last year. With the many different symptoms he is having the worst one for him is the tingling like pins and needles from the waist down to his toes .None of his medication is helping at this time and i was just wondering (hoping actually) if anyone has had any improvement with this symptom. Any suggestions or advice would be greatly appreciated.thank you

[Guest guest]

, I don't know if you have WalMart there, but I got mine for $8-10 a few years back. It has a little velcro strip to hold it closed & a carry strap. Practically everywhere I go I have my purse, water jug (another shoulder strap) & the footstool. I've had lots of people, especially in doctors' waiting rooms ask me where I got it. I could probably set up in a busy waiting room with a few stools & make a few bucks!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sat, 7 May 2011 17:05:23 +0000Subject: RE: Peripheral neuropathy

Thanks for the welcome Rose, and to comfort your memory, I kind of snuck in here so it is the first official welcome. I was a bit afraid to join, but given what's going on with my husband and family, I realize I need this group for my sarc stuff :)Thanks for the camp stool idea; I will get one because I end up places where I need to put up my feet (elevation helps, and I have tremendous edema, too) and this is a practical, inexpensive and light solution.I've developed some interesting positions at home, too!!Thanks again; will join chat sometime soon but life a little busy here these days . . .Cheers,

To: neurosarcoidosis From: mamadogrose@...Date: Fri, 6 May 2011 19:09:07 -0400Subject: Peripheral neuropathy

Hi, . I don't think I have welcomed you (wouldn't guarantee it; memory's in a sad state), but I know that others have. Sounds like you have been through the ringer in the short time since diagnosis. And a brain biopsy. Yikes. I can't imagine how scary that would be. I too have the peripheral neuropathy, much worse in the feet than in the hands. I have found that elevating my feet, even if it's only straight out, reduces the pain. I carry a 3-legged camp stool everywhere I go, so I can use it as a footstool. At home most of the time I raise my feet up much higher. In my recliner I use a partially-inflated exercise ball; works much better than a stack of pillows. For bed I've taken some foam rubber & rolled it up, then covered with a sheet. Most days by the time I go to bed I can't stand anything touching my feet, but I also have to keep them warm or the pain is worse. So I made a "tent" over my feet by bending a wire shelf (like a fridge shelf) into a U shape. I put that on top of the foam rubber & a couple of folded fleece blankets over it, then my covers! Looks mighty strange, but it works for me. I also have a couple of heated rice sox that I put in the little tent to warm it up & keep it warm. I also take Lyrica, but that alone wouldn't be enough. Keeping my feet up & warm makes a big difference. If I have to have my feet dependent (not walking, but just down, like driving) for more than 30 min. or so, they begin to feel huge & tight (feels like a tight b/p cuff), but there's no swelling. They also get more numb, even though they hurt more. It hurts to press on the gas & brake, yet I have a hard time knowing how hard I'm pressing. It feels like there are thick pieces of foam on the bottoms of my feet. It's a bizarre feeling. On the highway, if I don't use cruise control, I will realize that everyone is passing me & I'm only going 50 mph. That's why I don't drive anymore than necessary. So one thing about the sarc monster: it's brought out my creative side! Again, welcome to the group & I hope you can make it to the chatroom tonight. It's 9p EDT (NYC time). Watch for the reminder with the link. Oh, and I wanted to clarify a couple of the meds you mentioned, so no one gets confused. I'm a retired nurse & have trouble remembering the generic names. Remicade is infliximab; Azithioprine is Imuran.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Tue, 26 Apr 2011 21:01:22 +0000Subject: RE: New to Neurosarcoidocis

Good day: I, too, am relatively new to Neurosarc (diagnosis confirmed by brain biopsy on April 23 last year), with a fairly swift onset of multiple symptoms despite large doses of prednisone. I have been treated with Cyclopohsamide (cytoxan/chemo); aziathoprine (?) in hopes of being able to reduce the steroid and its side-effects but without success. I am currently on CellCept (it appears to be helpful, given reduced areas of inflammation in brain on most recent MRI) and am waiting to begin complementary treatment with Imuran (remicaide) -- hopefully in next couple of weeks!! (Just learned today Merck/Schering, the manufacturer has approved my case under compassionate access program; I live in the Niagara area of Ontario, Canada and this particular "off-book" use is not approved by Health Canada so no private or public drug benefit program will give approval for or cover cost of these treatments . . .However, to 's issue/question, and the reason I am weighing in today: I, too, have incredible tingling/peripheral neuropathy, as well as trigemenal nerve involvement. I have found success with Gabapentin; this reduces the tingling and pain, but I have not experienced the side effects I did with Lyrica (tried two nights and had horrible dreams) . .. The Gabapentin also helps with the burning. I know it makes a difference because I have missed doses on occasion; despite relatively severe symptoms I am still taking a relatively low dose; do have some room to "grow" if necessary. I am also on hydromorphone (time release) for pain but the neuropathy is a separate issue, as most of you probably understand . .. Hope this helps, and all the best to everyone in this group.--the Canuck!

To: Neurosarcoidosis From: mebramer@...Date: Tue, 26 Apr 2011 11:21:30 -0600Subject: Re: New to Neurosarcoidocis

Hi , Welcome, I'm sorry you had to find us, but there is a lot of information from many wonderful, caring, people here that have been through many things. I use to have the tingling and pins and needles feeling, esp my left side, now I just have a numb feeling, every once in awhile if I forget I'm sitting on my left leg, it will tingle, with needles for a few minutes, then it goes back to being numb. I am numb from the top of my head, left side all the way down to my toes, it's a strange feeling, but better then the tingling, pins and needles feeling, can't say I remember if one med took it away, or it just progressed to that point, I think it was not helped at the time with any meds. I've taken several different meds for the nerve pain, which is not the needles and pins, it's more intense burning like pain, and that was helped first with neurontin, then Lyrica, and now on Cymbalta, not on all, just the Cymbalta right now. feel more numbness with it, but less pain, I'll take numbness over pain any day. Hope this was helpful, but probably not, hope someone else has better info for you. feel free to ask any questions. Were here to help. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

After suffering for some time with so many different symptoms my husband finally got diagnosed with neurosarcoidocis last year. With the many different symptoms he is having the worst one for him is the tingling like pins and needles from the waist down to his toes .None of his medication is helping at this time and i was just wondering (hoping actually) if anyone has had any improvement with this symptom. Any suggestions or advice would be greatly appreciated.thank you

[Guest guest]

Thanks; will check out Wal-Marts in this neck of the woods; we have several.

To: neurosarcoidosis From: mamadogrose@...Date: Sun, 8 May 2011 00:34:56 -0400Subject: RE: Peripheral neuropathy

, I don't know if you have WalMart there, but I got mine for $8-10 a few years back. It has a little velcro strip to hold it closed & a carry strap. Practically everywhere I go I have my purse, water jug (another shoulder strap) & the footstool. I've had lots of people, especially in doctors' waiting rooms ask me where I got it. I could probably set up in a busy waiting room with a few stools & make a few bucks!

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Sat, 7 May 2011 17:05:23 +0000Subject: RE: Peripheral neuropathy

Thanks for the welcome Rose, and to comfort your memory, I kind of snuck in here so it is the first official welcome. I was a bit afraid to join, but given what's going on with my husband and family, I realize I need this group for my sarc stuff :)Thanks for the camp stool idea; I will get one because I end up places where I need to put up my feet (elevation helps, and I have tremendous edema, too) and this is a practical, inexpensive and light solution.I've developed some interesting positions at home, too!!Thanks again; will join chat sometime soon but life a little busy here these days . . .Cheers,

To: neurosarcoidosis From: mamadogrose@...Date: Fri, 6 May 2011 19:09:07 -0400Subject: Peripheral neuropathy

Hi, . I don't think I have welcomed you (wouldn't guarantee it; memory's in a sad state), but I know that others have. Sounds like you have been through the ringer in the short time since diagnosis. And a brain biopsy. Yikes. I can't imagine how scary that would be. I too have the peripheral neuropathy, much worse in the feet than in the hands. I have found that elevating my feet, even if it's only straight out, reduces the pain. I carry a 3-legged camp stool everywhere I go, so I can use it as a footstool. At home most of the time I raise my feet up much higher. In my recliner I use a partially-inflated exercise ball; works much better than a stack of pillows. For bed I've taken some foam rubber & rolled it up, then covered with a sheet. Most days by the time I go to bed I can't stand anything touching my feet, but I also have to keep them warm or the pain is worse. So I made a "tent" over my feet by bending a wire shelf (like a fridge shelf) into a U shape. I put that on top of the foam rubber & a couple of folded fleece blankets over it, then my covers! Looks mighty strange, but it works for me. I also have a couple of heated rice sox that I put in the little tent to warm it up & keep it warm. I also take Lyrica, but that alone wouldn't be enough. Keeping my feet up & warm makes a big difference. If I have to have my feet dependent (not walking, but just down, like driving) for more than 30 min. or so, they begin to feel huge & tight (feels like a tight b/p cuff), but there's no swelling. They also get more numb, even though they hurt more. It hurts to press on the gas & brake, yet I have a hard time knowing how hard I'm pressing. It feels like there are thick pieces of foam on the bottoms of my feet. It's a bizarre feeling. On the highway, if I don't use cruise control, I will realize that everyone is passing me & I'm only going 50 mph. That's why I don't drive anymore than necessary. So one thing about the sarc monster: it's brought out my creative side! Again, welcome to the group & I hope you can make it to the chatroom tonight. It's 9p EDT (NYC time). Watch for the reminder with the link. Oh, and I wanted to clarify a couple of the meds you mentioned, so no one gets confused. I'm a retired nurse & have trouble remembering the generic names. Remicade is infliximab; Azithioprine is Imuran.

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: neurosarcoidosis From: wluce50@...Date: Tue, 26 Apr 2011 21:01:22 +0000Subject: RE: New to Neurosarcoidocis

Good day: I, too, am relatively new to Neurosarc (diagnosis confirmed by brain biopsy on April 23 last year), with a fairly swift onset of multiple symptoms despite large doses of prednisone. I have been treated with Cyclopohsamide (cytoxan/chemo); aziathoprine (?) in hopes of being able to reduce the steroid and its side-effects but without success. I am currently on CellCept (it appears to be helpful, given reduced areas of inflammation in brain on most recent MRI) and am waiting to begin complementary treatment with Imuran (remicaide) -- hopefully in next couple of weeks!! (Just learned today Merck/Schering, the manufacturer has approved my case under compassionate access program; I live in the Niagara area of Ontario, Canada and this particular "off-book" use is not approved by Health Canada so no private or public drug benefit program will give approval for or cover cost of these treatments . . .However, to 's issue/question, and the reason I am weighing in today: I, too, have incredible tingling/peripheral neuropathy, as well as trigemenal nerve involvement. I have found success with Gabapentin; this reduces the tingling and pain, but I have not experienced the side effects I did with Lyrica (tried two nights and had horrible dreams) . .. The Gabapentin also helps with the burning. I know it makes a difference because I have missed doses on occasion; despite relatively severe symptoms I am still taking a relatively low dose; do have some room to "grow" if necessary. I am also on hydromorphone (time release) for pain but the neuropathy is a separate issue, as most of you probably understand . .. Hope this helps, and all the best to everyone in this group.--the Canuck!

To: Neurosarcoidosis From: mebramer@...Date: Tue, 26 Apr 2011 11:21:30 -0600Subject: Re: New to Neurosarcoidocis

Hi , Welcome, I'm sorry you had to find us, but there is a lot of information from many wonderful, caring, people here that have been through many things. I use to have the tingling and pins and needles feeling, esp my left side, now I just have a numb feeling, every once in awhile if I forget I'm sitting on my left leg, it will tingle, with needles for a few minutes, then it goes back to being numb. I am numb from the top of my head, left side all the way down to my toes, it's a strange feeling, but better then the tingling, pins and needles feeling, can't say I remember if one med took it away, or it just progressed to that point, I think it was not helped at the time with any meds. I've taken several different meds for the nerve pain, which is not the needles and pins, it's more intense burning like pain, and that was helped first with neurontin, then Lyrica, and now on Cymbalta, not on all, just the Cymbalta right now. feel more numbness with it, but less pain, I'll take numbness over pain any day. Hope this was helpful, but probably not, hope someone else has better info for you. feel free to ask any questions. Were here to help. Marla "Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours." - Irish Proverb

After suffering for some time with so many different symptoms my husband finally got diagnosed with neurosarcoidocis last year. With the many different symptoms he is having the worst one for him is the tingling like pins and needles from the waist down to his toes .None of his medication is helping at this time and i was just wondering (hoping actually) if anyone has had any improvement with this symptom. Any suggestions or advice would be greatly appreciated.thank you