Re: Skin biopsy, Sjorgens,e tc

[Guest guest]

Barb, your skin biopsy was taken from a spot where they felt a granuloma would appear. You got lucky, they hit the right spot.

Small nerve fiber neuropathy is actually diagnosed via the EMS and EEG tests. What happens is that they send an electrical impulse from one spot to another and time the reaction-- or the non-reaction. Delayed reaction shows them that the nerve pathways are damaged-- and this leads to the diagnosis.

The symptoms of small nerve fiber neuropathy is a sensation of burning, itching, stinging-- sometimes to the extreme of pain when just the air touches your skin. Then add a bit of time in the sun-- and what would be a simple mild sunburn can feel like absolute fire.

Small nerve fiber neuropathy is due to the myelin sheat that covers the ends of the nerves being injured-- and is part of the demyelination that begins at the ends of our nerves for those of us with NS-- and can work it's way up to the spine-- where in MS -- the demyelination starts at the spinal cord and brain and works outward.

One of the most soothing remedies is Neutrogenia's Norwegian Formula body lotion. You can get it at any drug store for about $7.00 for a 14oz bottle.

Dry mouth issues can be addressed with Biotine-- there is a mouthwash, toothpaste, oral gel, and gum. Again-- any drugstore-- Walmart, Longs, CVS-- etc. They too are inexpensive- and will help to save your teeth by preventing tooth decay from the dry mouth issues.

I am sending an article on Small Nerve Fiber Neuropathy on a seperate email-- please read it and since some of it is in medspeak--ask and we'll decipher.

Do take care

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, May 21, 2010 4:40:41 AMSubject: Re: Suggestions?

hi darrin, have they done a skin biopsy on you to check for small fiber neuropathy? that is how i was diagnosed with neurosarc of the central nervous system. i would ask your neuro doctor to do this. also with the dry eyes and mouth have they tested you for shogren's syndrome google both of these things and you will surprised. we as patients sometimes have to demand these test! be a voice and speak up! good luck to you and let us know how it goes! ~~~~~~~~~barb

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Thu, May 20, 2010 10:30:58 PMSubject: Suggestions?

Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very

severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and

otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

[Guest guest]

Tracie, back in 2002 when I first saw Dr. Stern at Emory U., my EMG, etc. had been normal. He suggested that I consider a nerve biopsy at some point, but that I needed treatment anyway, so not a pressing need. Since then I've had 2 more EMGs, which showed "mild-moderate" neuropathy. That kind of pissed me off, since I have "severe" pain, but my neuro & the IU sarc guy calmed me down, saying that the testing does not necessarily correlate with symptoms. I've never seen any point in a biopsy, since I've done all the recommended stuff for it anyway, but maybe for some people it might help with diagnosis. Then ago, that was 8 years ago, so maybe that approach isn't even recommended now. Stern was one of the top NS guys in the country back then, but he switched his focus to strokes in young women (I think) & moved to land, so what the heck did he know?!?

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: tiodaat2001@...Date: Fri, 21 May 2010 14:47:22 -0700Subject: Re: Skin biopsy, Sjorgens,e tc

Barb, your skin biopsy was taken from a spot where they felt a granuloma would appear. You got lucky, they hit the right spot.

Small nerve fiber neuropathy is actually diagnosed via the EMS and EEG tests. What happens is that they send an electrical impulse from one spot to another and time the reaction-- or the non-reaction. Delayed reaction shows them that the nerve pathways are damaged-- and this leads to the diagnosis.

The symptoms of small nerve fiber neuropathy is a sensation of burning, itching, stinging-- sometimes to the extreme of pain when just the air touches your skin. Then add a bit of time in the sun-- and what would be a simple mild sunburn can feel like absolute fire.

Small nerve fiber neuropathy is due to the myelin sheat that covers the ends of the nerves being injured-- and is part of the demyelination that begins at the ends of our nerves for those of us with NS-- and can work it's way up to the spine-- where in MS -- the demyelination starts at the spinal cord and brain and works outward.

One of the most soothing remedies is Neutrogenia's Norwegian Formula body lotion. You can get it at any drug store for about $7.00 for a 14oz bottle.

Dry mouth issues can be addressed with Biotine-- there is a mouthwash, toothpaste, oral gel, and gum. Again-- any drugstore-- Walmart, Longs, CVS-- etc. They too are inexpensive- and will help to save your teeth by preventing tooth decay from the dry mouth issues.

I am sending an article on Small Nerve Fiber Neuropathy on a seperate email-- please read it and since some of it is in medspeak--ask and we'll decipher.

Do take care

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, May 21, 2010 4:40:41 AMSubject: Re: Suggestions?

hi darrin, have they done a skin biopsy on you to check for small fiber neuropathy? that is how i was diagnosed with neurosarc of the central nervous system. i would ask your neuro doctor to do this. also with the dry eyes and mouth have they tested you for shogren's syndrome google both of these things and you will surprised. we as patients sometimes have to demand these test! be a voice and speak up! good luck to you and let us know how it goes! ~~~~~~~~~barb

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Thu, May 20, 2010 10:30:58 PMSubject: Suggestions?

Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.

[Guest guest]

YEah, mine came back showing "minor" deficits-- the eeg anyway. The EMG showed moderate to severe lack of reaction-- and I had the hot/cold sensation deficit. At that time, I could pick up a boiling cup of water in a cup-- and not realize that I was getting burned. Cold was intolerable-- the pain sent me thru the roof.

The site I sent in a seperate email is a pretty complete explanation of this problem, and with all of us having been on pred and later dx with diabetes-- the neuropathy is often explained away as a blood sugar issue. Too bad our docs won't acknowledge that it is secondary to the steroids and the demyelination from the sarc.

Thanks for the feedback,

Tracie

To: neurosarcoidosis Sent: Fri, May 21, 2010 5:05:01 PMSubject: RE: Skin biopsy, Sjorgens,e tc

Tracie, back in 2002 when I first saw Dr. Stern at Emory U., my EMG, etc. had been normal. He suggested that I consider a nerve biopsy at some point, but that I needed treatment anyway, so not a pressing need. Since then I've had 2 more EMGs, which showed "mild-moderate" neuropathy. That kind of pissed me off, since I have "severe" pain, but my neuro & the IU sarc guy calmed me down, saying that the testing does not necessarily correlate with symptoms. I've never seen any point in a biopsy, since I've done all the recommended stuff for it anyway, but maybe for some people it might help with diagnosis. Then ago, that was 8 years ago, so maybe that approach isn't even recommended now. Stern was one of the top NS guys in the country back then, but he switched his focus to strokes in young women (I think) & moved to land, so what the heck did he know?!?

Ramblin' RoseModerator

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Fri, 21 May 2010 14:47:22 -0700Subject: Re: Skin biopsy, Sjorgens,e tc

Barb, your skin biopsy was taken from a spot where they felt a granuloma would appear. You got lucky, they hit the right spot.

Small nerve fiber neuropathy is actually diagnosed via the EMS and EEG tests. What happens is that they send an electrical impulse from one spot to another and time the reaction-- or the non-reaction. Delayed reaction shows them that the nerve pathways are damaged-- and this leads to the diagnosis.

The symptoms of small nerve fiber neuropathy is a sensation of burning, itching, stinging-- sometimes to the extreme of pain when just the air touches your skin. Then add a bit of time in the sun-- and what would be a simple mild sunburn can feel like absolute fire.

Small nerve fiber neuropathy is due to the myelin sheat that covers the ends of the nerves being injured-- and is part of the demyelination that begins at the ends of our nerves for those of us with NS-- and can work it's way up to the spine-- where in MS -- the demyelination starts at the spinal cord and brain and works outward.

One of the most soothing remedies is Neutrogenia' s Norwegian Formula body lotion. You can get it at any drug store for about $7.00 for a 14oz bottle.

Dry mouth issues can be addressed with Biotine-- there is a mouthwash, toothpaste, oral gel, and gum. Again-- any drugstore-- Walmart, Longs, CVS-- etc. They too are inexpensive- and will help to save your teeth by preventing tooth decay from the dry mouth issues.

I am sending an article on Small Nerve Fiber Neuropathy on a seperate email-- please read it and since some of it is in medspeak--ask and we'll decipher.

Do take care

Tracie

NS Co-owner/moderator

From: Barbara Weber <beautybarnweber@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Fri, May 21, 2010 4:40:41 AMSubject: Re: Suggestions?

hi darrin, have they done a skin biopsy on you to check for small fiber neuropathy? that is how i was diagnosed with neurosarc of the central nervous system. i would ask your neuro doctor to do this. also with the dry eyes and mouth have they tested you for shogren's syndrome google both of these things and you will surprised. we as patients sometimes have to demand these test! be a voice and speak up! good luck to you and let us know how it goes! ~~~~~~~~~barb

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Thu, May 20, 2010 10:30:58 PMSubject: Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty

walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely

walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.

[Guest guest]

Well I can jump in here if you guys don't mind, I am no stranger to Sjorgens.. it is the most difficult thing in the world to have to deal with, the inside of your mouth and nasopharayx can get so dry you can barely move your tongue to speak, then comes the sharp stabbing pains.. it is misserable and I do feel sorry for anyone of you that have to experience it.. Now, I see a ENT(ear,nose, and throat) guy and he was very kind and understands well the misery that it can cause.. So I take Pilocarpine it is articfial salavia and it absolutely works.. I know there are things over the counter you can use but this medication if you take it like its ordered can keep you comfortable.. Ask your doctor about it..

Hugs,

Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.

[Guest guest]

, my dry mouth varies, some days worse than others. Once I was leaving a basketball game with my grandkids & had drank all the water in my jug. I was so dry I absolutely could not wait until we got to a fountain or sink or anything--I picked up a couple of unfinished drinks sitting on the bleachers & drained them! The kids were about to gag. So far I've been able to use the OTC mouth gel (by Oral Care, I think), usually at night when my mouth is so dry I can't go to sleep. Like you say, it sticks together. More misery from the sarc monster. (Good name, Darlene)

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: topdat1@...Date: Sat, 22 May 2010 01:59:37 -0500Subject: Re: Skin biopsy, Sjorgens,e tc

Well I can jump in here if you guys don't mind, I am no stranger to Sjorgens.. it is the most difficult thing in the world to have to deal with, the inside of your mouth and nasopharayx can get so dry you can barely move your tongue to speak, then comes the sharp stabbing pains.. it is misserable and I do feel sorry for anyone of you that have to experience it.. Now, I see a ENT(ear,nose, and throat) guy and he was very kind and understands well the misery that it can cause.. So I take Pilocarpine it is articfial salavia and it absolutely works.. I know there are things over the counter you can use but this medication if you take it like its ordered can keep you comfortable.. Ask your doctor about it..

Hugs,

Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.

Hotmail is redefining busy with tools for the New Busy. Get more from your inbox. See how.

[Guest guest]

Thanks, Rose.........I named this awful disease the Sarc Monster when I had my

first list on Yahoo........

Hugs,

Darlene

Suggestions? Hello, I was operating under the assumption I either had ms or neurosarc.All tests for ms came back negative. They did a chest x ray, then a ct.This led them to follow up with a pet. I have a 2 cm lesion in one lung.It is suspicious for cancer but they can't tell if it really is or it's just anold lesion of some kind. They suggested a follow up ct in the near futureto see whether it is growing. If it's growing it may be something to beconcerned about, otherwise it may just be old news already fixed by myimmune system. They said the pet was not a classical presentation of sarcoidosis apparently meaning it showed nothing consistent with lungsarc. My ms doc finished her ms part of the job and appropriately dumped meback on my family physician. I've been doing much better lately. My moreprofound neuro symptoms such as muscle twitches, severe difficulty walking,pain, confusion, very severe fatigue, etc. have mostly abated leaving mejust weaker and more tired than I used to be, especially when walking. My ACE and calcium levels are elevated and according to the last test stillrising. I'm confused because a spot on my lung, even if it were to turn out to becancerous, doesn't seem to address either the ACE levels (typically associatedwith lymphoma but not mentioned for other cancers) or the neurological issues (though paraneoplastic syndrome could account for those). Nor would itseem to account for the dry eye and mouth issues that've plagued me for yearsalong with a salivary gland that keeps swelling up and then going down again. I'm tired of fighting with the doctors and figure my chances of getting taken seriously while I'm in remission from whatever I have are minimal considering howmuch difficulty I had when I could barely walk. Following up on the ct and otherwiseignoring the rest of it until I have another flare seems like the path of least resistanceat the moment. Sorry for the length of this post but I hate answering questions without backgroundinfo. My question is whether anyone has been through a similar experience or has suggestions as to a course of action if any. Cheers,Darrin

The New Busy is not the too busy. Combine all your e-mail accounts with Hotmail. Get busy.

Hotmail is redefining busy with tools for the New Busy. Get more from your inbox. See how.