Re: New to Neurosarcoidocis & Vining

[Guest guest]

Thanks, Connie and thanks all: really good to know you are out there. I am on top of the dental issues -- with breathing problems have mouth open a lot (not really a change for me, except I say less !!) and am using both a flouride and "dry mouth" mouthwash as part of regular routine.

Now for the "Vining" -- my blend of venting and whining . . .

I am still waiting to start the Remicaide -- see from others that, like most of these drugs it works some of the time, and some times not. Hope my liver will withstand; that was issue with Aziathropine and cyclophosamide. While on methotrexate I got a lot worse -- on the CellCept I seem, finally, to be getting better but have not be weaned of pred so the 'real" test hasn't happened.

But pressure is on now for me to get better and get off disability and back to work as my husband -- history of (congenital) heart problems and stroke, and a 40+-year-old mechanical valve -- was this diagnosed with an aortic aneurysm and is now himself off on short-term disability for unknown period of time.

And this isn't going into the family issues (his ex and a couple of adult children) . .. not to mention my unemployed, but educated, adult son and his wife who are expecting their first child (and my first grandchild) in the fall...

Why does it seem -- from so many of the group -- that on top of what we bear, our immediate families are also either burdened themselves with serious health problems and or are an additional burden, just when we need it the least.

Please bear with me: this is a bad symptom day for me, and I have so much I must do when all I want to do is lay down and sleep . . . (our closet fell apart the other night; I must fix this today)

Thanks again; it helps so much to know I am not alone in what I am experiencing; I know this is a "weird" disease but thank God, I do have a great medical team (rheumatologist, neurologist, optho-neurologist)--specialists who are working together in my care, along with several others, all of whom are accessible, just an hour away; and a great GP here in my home region.

Cheers,

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 4 May 2011 20:08:38 -0700Subject: Re: New to Neurosarcoidocis

Be careful to keep up with your dental care if you use Neurontin (gabapentin), it can cause issues sometimes

To: neurosarcoidosis Sent: Tue, April 26, 2011 5:01:22 PMSubject: 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 NeurosarcoidocisHi , 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]

, love the new term "Vining!"

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

To: neurosarcoidosis From: wluce50@...Date: Thu, 5 May 2011 16:47:32 +0000Subject: RE: New to Neurosarcoidocis & "Vining"

Thanks, Connie and thanks all: really good to know you are out there. I am on top of the dental issues -- with breathing problems have mouth open a lot (not really a change for me, except I say less !!) and am using both a flouride and "dry mouth" mouthwash as part of regular routine.Now for the "Vining" -- my blend of venting and whining . . .I am still waiting to start the Remicaide -- see from others that, like most of these drugs it works some of the time, and some times not. Hope my liver will withstand; that was issue with Aziathropine and cyclophosamide. While on methotrexate I got a lot worse -- on the CellCept I seem, finally, to be getting better but have not be weaned of pred so the 'real" test hasn't happened.But pressure is on now for me to get better and get off disability and back to work as my husband -- history of (congenital) heart problems and stroke, and a 40+-year-old mechanical valve -- was this diagnosed with an aortic aneurysm and is now himself off on short-term disability for unknown period of time.And this isn't going into the family issues (his ex and a couple of adult children) . .. not to mention my unemployed, but educated, adult son and his wife who are expecting their first child (and my first grandchild) in the fall...Why does it seem -- from so many of the group -- that on top of what we bear, our immediate families are also either burdened themselves with serious health problems and or are an additional burden, just when we need it the least.Please bear with me: this is a bad symptom day for me, and I have so much I must do when all I want to do is lay down and sleep . . . (our closet fell apart the other night; I must fix this today)Thanks again; it helps so much to know I am not alone in what I am experiencing; I know this is a "weird" disease but thank God, I do have a great medical team (rheumatologist, neurologist, optho-neurologist)--specialists who are working together in my care, along with several others, all of whom are accessible, just an hour away; and a great GP here in my home region.Cheers,

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 4 May 2011 20:08:38 -0700Subject: Re: New to Neurosarcoidocis

Be careful to keep up with your dental care if you use Neurontin (gabapentin), it can cause issues sometimes

To: neurosarcoidosis Sent: Tue, April 26, 2011 5:01:22 PMSubject: 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 NeurosarcoidocisHi , 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, Rose:

Here's another new term-- my husband and I saw his cardiovascular surgeon yesterday and took a radiology report from his CT scan here in Niagara, which included a medical term we've never seen/heard before, and which has us laughing (in the face of death, literally); the Dr described his aortic aneurysm as "giant". Later, after a follow-up scan at Hamilton General Hospital (about an hour from Niagara Falls, in Ontario, Canada to help you with geography) the CT technician only whistled after doing 's scan, then refused to let him leave hosptial before checking with the Dr office.

We're getting through this weekend, while Dr develops a plan of attack -- has had 4 prior open heart surgeries -- and we wait til Mon for a couple more tests to be booked; then he will have his 5th open heart that will -- all going well -- release/fix the giant aneurysm and also include an aortic valvle replacement.

This man is a trooper, and a fighter, and I feel all will be well; I love him and need him in my life.

So, my remicaide treatments are to start in next week or so; I am counting on this to help my recovery so I can be strong for . Let's hope I don't experience side effects.

Best wishes to all the Moms out there on Mother's Day tomorrow.

To: neurosarcoidosis From: mamadogrose@...Date: Fri, 6 May 2011 19:46:58 -0400Subject: RE: New to Neurosarcoidocis & "Vining"

, love the new term "Vining!"

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

To: neurosarcoidosis From: wluce50@...Date: Thu, 5 May 2011 16:47:32 +0000Subject: RE: New to Neurosarcoidocis & "Vining"

Thanks, Connie and thanks all: really good to know you are out there. I am on top of the dental issues -- with breathing problems have mouth open a lot (not really a change for me, except I say less !!) and am using both a flouride and "dry mouth" mouthwash as part of regular routine.Now for the "Vining" -- my blend of venting and whining . . .I am still waiting to start the Remicaide -- see from others that, like most of these drugs it works some of the time, and some times not. Hope my liver will withstand; that was issue with Aziathropine and cyclophosamide. While on methotrexate I got a lot worse -- on the CellCept I seem, finally, to be getting better but have not be weaned of pred so the 'real" test hasn't happened.But pressure is on now for me to get better and get off disability and back to work as my husband -- history of (congenital) heart problems and stroke, and a 40+-year-old mechanical valve -- was this diagnosed with an aortic aneurysm and is now himself off on short-term disability for unknown period of time.And this isn't going into the family issues (his ex and a couple of adult children) . .. not to mention my unemployed, but educated, adult son and his wife who are expecting their first child (and my first grandchild) in the fall...Why does it seem -- from so many of the group -- that on top of what we bear, our immediate families are also either burdened themselves with serious health problems and or are an additional burden, just when we need it the least.Please bear with me: this is a bad symptom day for me, and I have so much I must do when all I want to do is lay down and sleep . . . (our closet fell apart the other night; I must fix this today)Thanks again; it helps so much to know I am not alone in what I am experiencing; I know this is a "weird" disease but thank God, I do have a great medical team (rheumatologist, neurologist, optho-neurologist)--specialists who are working together in my care, along with several others, all of whom are accessible, just an hour away; and a great GP here in my home region.Cheers,

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 4 May 2011 20:08:38 -0700Subject: Re: New to Neurosarcoidocis

Be careful to keep up with your dental care if you use Neurontin (gabapentin), it can cause issues sometimes

To: neurosarcoidosis Sent: Tue, April 26, 2011 5:01:22 PMSubject: 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 NeurosarcoidocisHi , 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]

Best wishes and prayers for your family.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: New to NeurosarcoidocisHi , 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; we will pull through, I am sure.

To: Neurosarcoidosis From: shadowme810@...Date: Sat, 7 May 2011 18:15:51 -0500Subject: Re: New to Neurosarcoidocis & "Vining"

Best wishes and prayers for your family.

Jackie

Today I broke my Personal Record;;;;;;;; I am STILL ALIVE............

Re: New to NeurosarcoidocisHi , 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]

it sounds like maybe your husband is 55 yrs old, or older unless he had the valve put in as a baby. What did he do for a living. What is the size of the aneurysm, and is there any other cardiac or physical problems. The reason I am asking, is I am a MDE for Social Security. Even without knowing all the medical details, with an aneurysm, if your husband is over 55, has already had a mechanical valve, had a medium to heavy type job, and the medical problems are affecting his function. (Function:Fatigue, shortness of breath with exertion, sleeping on multiple pillows at night, trouble walking if he goes more than a very short distance, inability to climb stairs effectively, trouble standing, doing chores, chest pain, etc etc; he probably is a good

candidate for social security disability) If he is 62 he can apply for early retirement and SSD, which will give him more money. Just FYI///Connie

To: neurosarcoidosis Sent: Fri, May 6, 2011 7:46:58 PMSubject: RE: New to Neurosarcoidocis & "Vining"

, love the new term "Vining!"

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

To: neurosarcoidosis From: wluce50@...Date: Thu, 5 May 2011 16:47:32 +0000Subject: RE: New to Neurosarcoidocis & "Vining"Thanks, Connie and thanks all: really good to know you are out there. I am on top of the dental issues -- with breathing problems have mouth open a lot (not really a change for me, except I say less !!) and am using both a flouride and "dry mouth" mouthwash as part of regular routine.Now for the "Vining" -- my blend of venting and whining . . .I am still waiting to start the Remicaide -- see from others that, like most of these drugs it works some of the time, and some times not. Hope my liver will withstand; that was issue with Aziathropine and cyclophosamide. While on methotrexate I got a lot worse -- on the CellCept I seem, finally, to be getting better but have not be weaned of pred so the 'real" test hasn't

happened.But pressure is on now for me to get better and get off disability and back to work as my husband -- history of (congenital) heart problems and stroke, and a 40+-year-old mechanical valve -- was this diagnosed with an aortic aneurysm and is now himself off on short-term disability for unknown period of time.And this isn't going into the family issues (his ex and a couple of adult children) . .. not to mention my unemployed, but educated, adult son and his wife who are expecting their first child (and my first grandchild) in the fall...Why does it seem -- from so many of the group -- that on top of what we bear, our immediate families are also either burdened themselves with serious health problems and or are an additional burden, just when we need it the least.Please bear with me: this is a bad symptom day for me, and I have so much I must do when all I want to do is lay down and sleep . . . (our

closet fell apart the other night; I must fix this today)Thanks again; it helps so much to know I am not alone in what I am experiencing; I know this is a "weird" disease but thank God, I do have a great medical team (rheumatologist, neurologist, optho-neurologist)--specialists who are working together in my care, along with several others, all of whom are accessible, just an hour away; and a great GP here in my home region.Cheers,

To: Neurosarcoidosis From: conaugusta@...Date: Wed, 4 May 2011 20:08:38 -0700Subject: Re: New to Neurosarcoidocis

Be careful to keep up with your dental care if you use Neurontin (gabapentin), it can cause issues sometimes

To: neurosarcoidosis Sent: Tue, April 26, 2011 5:01:22 PMSubject: 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 NeurosarcoidocisHi , 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]

Connie, you are definetly our Secret Weapon! I'm so grateful for the time &

energy you spend to share your knowledge & " tricks of the trade. " Thank you!

Re: New to Neurosarcoidocis & " Vining "

it sounds like maybe your husband is 55 yrs old, or older unless he had

the valve put in as a baby.  What did he do for a living.  What is the size of

the aneurysm, and is there any other cardiac or physical problems.  The reason I

am asking, is I am a MDE for Social Security.  Even without knowing all the

medical details, with an aneurysm, if your husband is over 55, has already had a

mechanical valve, had a medium to heavy type job, and the medical problems are

affecting his function. (Function:Fatigue, shortness of breath with exertion,

sleeping on multiple pillows at night, trouble walking if he goes more than a

very short distance, inability to climb stairs effectively, trouble standing,

doing chores, chest pain, etc etc; he probably is a good candidate for social

security disability)  If he is 62 he can apply for early retirement and SSD,

which will give him more money.  Just FYI///Connie

________________________________

To: neurosarcoidosi

[Guest guest]

Thanks so much Connie: your age guess on is pretty good; he's turning 55 in August (I'm counting on celebrating this birthday); he had the mechanical valve put in at 17.

The aneurysm is 9.5 x 6.2 cm (yes, metric, because we're in Canada -- Niagara area of Ontario to be more specific), so it is pretty big for an aortic aneurysm.

He works as a photcopier service technician, and for past week has been off the job. The good news: he has short term disability through his employer. But he cannot work because of the problems you have mentioned: shortness of breath, etc. and because his cardiologist and the cardiac surgeon have stressed that he must not lift more than 10 lbs, or strain/exert himself, and his toolkit alone is about 25 or 30 lbs, let alone the distance he must walk to get to some clients' offices and copiers. It's fun to hear him talk about his job; amazing how some people are creative about where they locate office machinery and then expect people to service it, while in other cases he gets into dangers you could not imagine on your best day!!) Luckily he is pain-free.

He has an angiogram scheduled for next Mon, May 16, and another test on the 18th, and then surgeon will be in touch regarding "plan of action."

I'm guessing but figure recovery will be 8 to 12-weeks at least. The short term disability lasts for 16 weeks, then he switches to long-term disability (LTD) for up to two years, if necessary. This LTD inclusdes either a return to to work plan, once he is given clearance, or an "alternate work plan", which can include retraining for a "new", heart-friendly career. The employer is not only required to maintain his "place" during this time, but also "accommodate" his disabilities and/or find him alternate but equal employment, and then, only if this cannot be done, and/or if Drs believe he should not work, then he can apply for provincial and federal disability pensions.

The same process applies to me, too. At this point, I am on LTD from my employer.

So, here in Canada, our private insurers are pretty good, and we have provincial and federal gov't programs as fail-safe.

Believe me, I know we are fortunate -- there are problems with health care, but overall, it's pretty good.

Thanks again for your help, and if I can ever be of assistance to anyone here in Ontario or Canada with questions/advide, I have a fair bit of experience in gov't and consumer advocacy.

Sincerely,

> To: conaugusta@...; Neurosarcoidosis > Date: Tue, 10 May 2011 14:22:37 +0000> Subject: Re: New to Neurosarcoidocis & "Vining"> > Connie, you are definetly our Secret Weapon! I'm so grateful for the time & energy you spend to share your knowledge & "tricks of the trade." Thank you!> Re: New to Neurosarcoidocis & "Vining"> > it sounds like maybe your husband is 55 yrs old, or older unless he had > the valve put in as a baby. What did he do for a living. What is the size of > the aneurysm, and is there any other cardiac or physical problems. The reason I > am asking, is I am a MDE for Social Security. Even without knowing all the > medical details, with an aneurysm, if your husband is over 55, has already had a > mechanical valve, had a medium to heavy type job, and the medical problems are > affecting his function. (Function:Fatigue, shortness of breath with exertion, > sleeping on multiple pillows at night, trouble walking if he goes more than a > very short distance, inability to climb stairs effectively, trouble standing, > doing chores, chest pain, etc etc; he probably is a good candidate for social > security disability) If he is 62 he can apply for early retirement and SSD, > which will give him more money. Just FYI///Connie> > > > > ________________________________> > To: neurosarcoidosi> > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

My pleasure

To: "conaugusta@..." ; "Neurosarcoidosis " <Neurosarcoidosis >Sent: Tue, May 10, 2011 10:22:37 AMSubject: Re: New to Neurosarcoidocis & "Vining"Connie, you are definetly our Secret Weapon! I'm so grateful for the time & energy you spend to share your knowledge & "tricks of the trade." Thank you! Re: New to Neurosarcoidocis & "Vining" it sounds like maybe your husband is 55 yrs old, or older unless he had the valve put in as a baby. What did he do for a living. What is the size of the aneurysm, and is there any other cardiac or physical problems. The reason I am asking, is I am a MDE for Social Security. Even without knowing all the medical details, with an aneurysm, if your husband is over 55, has already had a mechanical valve, had a medium to heavy type job, and the medical problems are affecting his function. (Function:Fatigue, shortness of breath with exertion, sleeping on multiple pillows at night, trouble walking if he goes more than a very short distance, inability to climb stairs effectively, trouble standing, doing chores, chest pain, etc etc; he

probably is a good candidate for social security disability) If he is 62 he can apply for early retirement and SSD, which will give him more money. Just FYI///Connie________________________________To: neurosarcoidosi------------------------------------~~~~ *** ~~~ *** ~~~ *** ~~~~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

[Guest guest]

I'm glad the situation is taken care of so well. It is very different in the US, I can buy short/long term disability but it is null and void until I remain healthy for over 2 years. Needless to say, I didn't bother. My employer is not obligated to me in any way fashion or form, despite who I work for. Don't get me wrong, I am thankful I have the kind of job I do, and can still make it so far. We will be remembering your husband and you, here's praying his recovery amazes his doctors.

To: neurosarcoidosis Sent: Tue, May 10, 2011 1:24:53 PMSubject: RE: New to Neurosarcoidocis & "Vining"

Thanks so much Connie: your age guess on is pretty good; he's turning 55 in August (I'm counting on celebrating this birthday); he had the mechanical valve put in at 17.The aneurysm is 9.5 x 6.2 cm (yes, metric, because we're in Canada -- Niagara area of Ontario to be more specific), so it is pretty big for an aortic aneurysm.He works as a photcopier service technician, and for past week has been off the job. The good news: he has short term disability through his employer. But he cannot work because of the problems you have mentioned: shortness of breath, etc. and because his cardiologist and the cardiac surgeon have stressed that he must not lift more than 10 lbs, or strain/exert himself, and his toolkit alone is about 25 or 30 lbs, let alone the distance he must walk to get to some clients' offices and copiers. It's fun to hear him talk about his job; amazing how some people are creative about where they locate

office machinery and then expect people to service it, while in other cases he gets into dangers you could not imagine on your best day!!) Luckily he is pain-free.He has an angiogram scheduled for next Mon, May 16, and another test on the 18th, and then surgeon will be in touch regarding "plan of action."I'm guessing but figure recovery will be 8 to 12-weeks at least. The short term disability lasts for 16 weeks, then he switches to long-term disability (LTD) for up to two years, if necessary. This LTD inclusdes either a return to to work plan, once he is given clearance, or an "alternate work plan", which can include retraining for a "new", heart-friendly career. The employer is not only required to maintain his "place" during this time, but also "accommodate" his disabilities and/or find him alternate but equal employment, and then, only if this cannot be done, and/or if Drs believe he should

not work, then he can apply for provincial and federal disability pensions.The same process applies to me, too. At this point, I am on LTD from my employer.So, here in Canada, our private insurers are pretty good, and we have provincial and federal gov't programs as fail-safe.Believe me, I know we are fortunate -- there are problems with health care, but overall, it's pretty good.Thanks again for your help, and if I can ever be of assistance to anyone here in Ontario or Canada with questions/advide, I have a fair bit of experience in gov't and consumer advocacy.Sincerely, > To: conaugusta@...; Neurosarcoidosis > Date: Tue, 10 May 2011 14:22:37 +0000> Subject: Re: New to Neurosarcoidocis & "Vining"> > Connie, you are definetly our Secret Weapon! I'm so grateful for the time & energy you spend to

share your knowledge & "tricks of the trade." Thank you!> Re: New to Neurosarcoidocis & "Vining"> > it sounds like maybe your husband is 55 yrs old, or older unless he had > the valve put in as a baby. What did he do for a living. What is the size of > the aneurysm, and is there any other cardiac or physical problems. The reason I > am asking, is I am a MDE for Social Security. Even without knowing all the > medical details, with an aneurysm, if your husband is over 55, has already had a > mechanical valve, had a medium to heavy type job, and the medical problems are > affecting his function. (Function:Fatigue, shortness of breath

with exertion, > sleeping on multiple pillows at night, trouble walking if he goes more than a > very short distance, inability to climb stairs effectively, trouble standing, > doing chores, chest pain, etc etc; he probably is a good candidate for social > security disability) If he is 62 he can apply for early retirement and SSD, > which will give him more money. Just FYI///Connie> > > > > ________________________________> > To: neurosarcoidosi> > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant

messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >