RE: encaphalopathy question

[Guest guest]

Hi ,

Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.

I haven't been diagnosed with it but haven't been tested for it either. The signs are certainly

there.

If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio because

listening to both is just too difficult somehow. Unless I turn off the radio I can't understand the

other person without intensely concentrating. I have similar issues in loud places like bars. In

a bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too much

signal to process. I like to get things in writing nowadays. Otherwise people will explain something

to me in detail and halfway through the conversation I'll realize I was supposed to be listening.

Even when everything is quiet and I'm sitting by myself as I am now I just feel like there's extra

space between my ears and I'm a bit out of it.

I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)

but it comes in spurts. I use my good moments well and put them together with other good moments.

Something I might have been able to do in one shot before I might break up into pieces, doing each

one at a time I feel good.

It is hard to tell the difference between encephalopathy and fatigue without physical testing but the

results of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, muscle

spasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms?

If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencing

the results of severe fatigue? It can be so disabling with similar results.

Just hoping the best for you.

Cheers,

Darrin

To: Neurosarcoidosis From: shannon.stemple@...Date: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

,

I can totally relate. What has helped me was the plaquenil-- it did make it so I could function a bit more clearly-- but also it took away some of the inflammation in my spine-- so I suspect that I am having some inflammation in the spinal fluid.

When we added the Remicade-- it was amazing-- I was able to really see a difference for a 3 of the 4 wks between infusions.

One of the ways I've learned to cope with this is to play Mahjongg on my computer. AARP has some excellant free games-- jigsaw puzzles, find a word, cards, etc. The concentration practice helps.

I also find that too much sound stimulus, and I'm literally in a panic. But I do find myself up at all hours of the night-- so it is a good time to read. The tv, dogs, husband are all asleep, and I can sit in total silence and actually comprehend what I'm reading. I've also found that when I'm on overload, if I come back into my "cave" and make some beaded jewelry. I don't do much of the advanced stuff, but I do have some great bracelets and necklaces that are made from some wonderful gems and minerals and glass beads. It seems to calm me down, and you really can't screw up-- if you do, it's "free-form!"

Fatigue does make it so much worse-- so pacing myself is very important.

In the Message Archives, is an article by Epilepsy docs-- and really addresses the seizures and brain fog issues we experience.

Much of it is from vasculitis-- when the blood vessels and nerves are inflammed, whatever the vessel is pressing on- is impaired while that inflammation is there- it also makes for it to be an intermittent problem.

Here is the site"

http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html

Anything you can do to find that you are working your brain-- will help keep the signals working better-- so even if you have to start with the simple puzzles, etc-- do it! Have someone help you with paying bills, etc-- if that becomes a problem. I know that was one of the hardest things for me, to surrender the finances, but it had to be for awhile, so that I wasn't bouncing checks.

Take care,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis " <neurosarcoidosis >Sent: Thu, February 25, 2010 8:05:34 AMSubject: RE: encaphalopathy question

Hi , Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.I haven't been diagnosed with it but haven't been tested for it either. The signs are certainlythere. If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio becauselistening to both is just too difficult somehow. Unless I turn off the radio I can't understand theother person without intensely concentrating. I have similar issues in loud places like bars. Ina bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too muchsignal to process. I like to get things in writing nowadays. Otherwise people will explain somethingto me in detail and halfway through the conversation I'll realize I was supposed to be listening.Even when everything is quiet and I'm sitting by myself as I am now I

just feel like there's extraspace between my ears and I'm a bit out of it. I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)but it comes in spurts. I use my good moments well and put them together with other good moments.Something I might have been able to do in one shot before I might break up into pieces, doing eachone at a time I feel good. It is hard to tell the difference between encephalopathy and fatigue without physical testing but theresults of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, musclespasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms? If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencingthe results of severe fatigue? It can be so disabling with

similar results. Just hoping the best for you. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: shannon.stemple@ yahoo.comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/ stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

Hmmm all of these symptoms that you speak of: The tremors, the brain fog the spasms of muscles. deals with all of those and no one has ever spoken about encaphalopathy.MattSubject: RE: encaphalopathy questionTo: "neurosarcoidosis " <neurosarcoidosis >Date: Thursday, February 25, 2010, 11:05 AM

Hi ,

Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.

I haven't been diagnosed with it but haven't been tested for it either. The signs are certainly

there.

If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio because

listening to both is just too difficult somehow. Unless I turn off the radio I can't understand the

other person without intensely concentrating. I have similar issues in loud places like bars. In

a bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too much

signal to process. I like to get things in writing nowadays. Otherwise people will explain something

to me in detail and halfway through the conversation I'll realize I was supposed to be listening.

Even when everything is quiet and I'm sitting by myself as I am now I just feel like there's extra

space between my ears and I'm a bit out of it.

I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)

but it comes in spurts. I use my good moments well and put them together with other good moments.

Something I might have been able to do in one shot before I might break up into pieces, doing each

one at a time I feel good.

It is hard to tell the difference between encephalopathy and fatigue without physical testing but the

results of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, muscle

spasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms?

If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencing

the results of severe fatigue? It can be so disabling with similar results.

Just hoping the best for you.

Cheers,

Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: shannon.stemple@ yahoo.comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/ stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

H Matt,

'Encephalopathy' is a literal catch-all that means 'brain disease'. Dozens to hundreds of diseases,

injuries, and toxins can cause it. The key seems to be that damage is diffused throughout the

brain rather than localized in one specific area.

Encephalopathy can cause those symptoms. So can brain or spinal granulomas, injuries, and a lot

of other things which are localized rather than diffused.

I'd be interested to hear what physical tests were used to produce a dx of encephalopathy.

Darrin

To: Neurosarcoidosis From: dmatt1960@...Date: Thu, 25 Feb 2010 15:22:59 -0800Subject: RE: encaphalopathy question

Hmmm all of these symptoms that you speak of: The tremors, the brain fog the spasms of muscles. deals with all of those and no one has ever spoken about encaphalopathy.Matt

Subject: RE: encaphalopathy questionTo: "neurosarcoidosis " <neurosarcoidosis >Date: Thursday, February 25, 2010, 11:05 AM

Hi , Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.I haven't been diagnosed with it but haven't been tested for it either. The signs are certainlythere. If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio becauselistening to both is just too difficult somehow. Unless I turn off the radio I can't understand theother person without intensely concentrating. I have similar issues in loud places like bars. Ina bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too muchsignal to process. I like to get things in writing nowadays. Otherwise people will explain somethingto me in detail and halfway through the conversation I'll realize I was supposed to be listening.Even when everything is quiet and I'm sitting by myself as I am now I just feel like there's extraspace between my ears and I'm a bit out of it. I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)but it comes in spurts. I use my good moments well and put them together with other good moments.Something I might have been able to do in one shot before I might break up into pieces, doing eachone at a time I feel good. It is hard to tell the difference between encephalopathy and fatigue without physical testing but theresults of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, musclespasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms? If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencingthe results of severe fatigue? It can be so disabling with similar results. Just hoping the best for you. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: shannon.stemple@ yahoo.comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/ stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

The symptoms you describe are all tht I have no one has ever mentioned Encaphalopathy. What test do they do?

To: Neurosarcoidosis Sent: Thu, February 25, 2010 5:22:59 PMSubject: RE: encaphalopathy question

Hmmm all of these symptoms that you speak of: The tremors, the brain fog the spasms of muscles. deals with all of those and no one has ever spoken about encaphalopathy.Matt

Subject: RE: encaphalopathy questionTo: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Date: Thursday, February 25, 2010, 11:05 AM

Hi , Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.I haven't been diagnosed with it but haven't been tested for it either. The signs are certainlythere. If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio becauselistening to both is just too difficult somehow. Unless I turn off the radio I can't understand theother person without intensely concentrating. I have similar issues in loud places like bars. Ina bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too muchsignal to process. I like to get things in writing nowadays. Otherwise people will explain somethingto me in detail and halfway through the conversation I'll realize I was supposed to be listening.Even when everything is quiet and I'm sitting by myself as I am now I

just feel like there's extraspace between my ears and I'm a bit out of it. I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)but it comes in spurts. I use my good moments well and put them together with other good moments.Something I might have been able to do in one shot before I might break up into pieces, doing eachone at a time I feel good. It is hard to tell the difference between encephalopathy and fatigue without physical testing but theresults of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, musclespasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms? If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencingthe results of severe fatigue? It can be so disabling with

similar results. Just hoping the best for you. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: shannon.stemple@ yahoo.comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/ stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

's Neurosarc is in the brain as granulomas and all of the symptoms that people have been speaking about the past couple days. Back long before they decided she had neurosarc they did a brain test where they put a cather up into her brain and tested brain functions of what she recognized both visually and with speech. Then they did the spatial tests etc. I just never knew that there was a name to cover the symptoms.

Matt

Subject: RE: encaphalopathy questionTo: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Date: Thursday, February 25, 2010, 11:05 AM

Hi , Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.I haven't been diagnosed with it but haven't been tested for it either. The signs are certainlythere. If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio becauselistening to both is just too difficult somehow. Unless I turn off the radio I can't understand theother person without intensely concentrating. I have similar issues in loud places like bars. Ina bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too muchsignal to process. I like to get things in writing nowadays. Otherwise people will explain somethingto me in detail and halfway through the conversation I'll realize I was supposed to be listening.Even when everything is quiet and I'm sitting by myself as I am now I

just feel like there's extraspace between my ears and I'm a bit out of it. I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)but it comes in spurts. I use my good moments well and put them together with other good moments.Something I might have been able to do in one shot before I might break up into pieces, doing eachone at a time I feel good. It is hard to tell the difference between encephalopathy and fatigue without physical testing but theresults of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, musclespasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms? If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencingthe results of severe fatigue? It can be so disabling with

similar results. Just hoping the best for you. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: shannon.stemple@ yahoo.comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/ stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

, Are you on any meds?  I found that mentally I improved on the Remicade, however do still have some cognitive problems, I don't think I will ever be the same.  Congrats on the Disability, one less thing to worry about.

I am still trying to run my in home business which I call my sanity. Blessings, Marla

 

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to get

input from others. Well for the good news, yesterday I finally

received approval for Social Security permanent disability based on Neurosarcoid/stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.

Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

Funny that so many mention that they cannot concentrate when so much is going on, I have that too, bad, my husband gets mad at me when he starts talking while I'm listening to TV, and he says " your going deaf "   yet I really don't feel hearing is the issue. 

So I think I must have this problem too,  man when I'm tired, it's hard to concentrate on anything, if I'm reading I find that I just read a whole page and don't have a clue what I read, so have to

reread the page again.  Hmmm, Marla

 

Hi ,

 

Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.

I haven't been diagnosed with it but haven't been tested for it either. The signs are certainly

there.

 

If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio because

listening to both is just too difficult somehow. Unless I turn off the radio I can't understand the

other person without intensely concentrating. I have similar issues in loud places like bars. In

a bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too much

signal to process. I like to get things in writing nowadays. Otherwise people will explain something

to me in detail and halfway through the conversation I'll realize I was supposed to be listening.

Even when everything is quiet and I'm sitting by myself as I am now I just feel like there's extra

space between my ears and I'm a bit out of it.

 

I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)

but it comes in spurts. I use my good moments well and put them together with other good moments.

Something I might have been able to do in one shot before I might break up into pieces, doing each

one at a time I feel good.

 

It is hard to tell the difference between encephalopathy and fatigue without physical testing but the

results of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, muscle

spasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms?

 

If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencing

the results of severe fatigue? It can be so disabling with similar results.

 

Just hoping the best for you.

 

 

Cheers,

Darrin 

To: Neurosarcoidosis From: shannon.stemple@...Date: Thu, 25 Feb 2010 08:18:05 +0000

Subject: encaphalopathy question 

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.

Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

Tracie, I am having terrible spine pain, starts at the base of my brain and goes down, I thought it was the cold, but my doctor reduced my plaquenil in half, after he put me back on the methotrexate, do you think that could be the spine pain??? 

I relate the Plaquenil to my skin and lungs, and my lungs are good, but my skin is going crazy, lesions popping up all over, and now the spine pain. Are you on all 3 drugs, that is what scares my doc.  Blessings,

Marla

 

,

I can totally relate.  What has helped me was the plaquenil-- it did make it so I could function a bit more clearly-- but also it took away some of the inflammation in my spine-- so I suspect that I am having some inflammation in the spinal fluid. 

When we added the Remicade-- it was amazing-- I was able to really see a difference for a 3 of the 4 wks between infusions. 

One of the ways I've learned to cope with this is to play Mahjongg on my computer. AARP has some excellant free games-- jigsaw puzzles, find a word, cards, etc.  The concentration practice helps.

I also find that too much sound stimulus, and I'm literally in a panic.  But I do find myself up at all hours of the night-- so it is a good time to read.  The tv, dogs, husband are all asleep, and I can sit in total silence and actually comprehend what I'm reading.  I've also found that when I'm on overload, if I come back into my " cave " and make some beaded jewelry.  I don't do much of the advanced stuff, but I do have some great bracelets and necklaces that are made from some wonderful gems and minerals and glass beads.  It seems to calm me down, and you really can't screw up-- if you do, it's " free-form! "  

Fatigue does make it so much worse-- so pacing myself is very important. 

In the Message Archives, is an article by Epilepsy docs-- and really addresses the seizures and brain fog issues we experience. 

Much of it is from vasculitis-- when the blood vessels and nerves are inflammed, whatever the vessel is pressing on- is impaired while that inflammation is there- it also makes for it to be an intermittent problem. 

Here is the site "

http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html

 

Anything you can do to find that you are working your brain-- will help keep the signals working better-- so even if you have to start with the simple puzzles, etc-- do it!  Have someone help you with paying bills, etc-- if that becomes a problem.  I know that was one of the hardest things for me, to surrender the finances, but it had to be for awhile, so that I wasn't bouncing checks. 

 

Take care,

Tracie

NS Co-owner/moderator

To: " neurosarcoidosis " <neurosarcoidosis >

Sent: Thu, February 25, 2010 8:05:34 AMSubject: RE: encaphalopathy question

 

Hi , Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.I haven't been diagnosed with it but haven't been tested for it either. The signs are certainly

there.  If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio becauselistening to both is just too difficult somehow. Unless I turn off the radio I can't understand the

other person without intensely concentrating. I have similar issues in loud places like bars. Ina bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too muchsignal to process. I like to get things in writing nowadays. Otherwise people will explain something

to me in detail and halfway through the conversation I'll realize I was supposed to be listening.Even when everything is quiet and I'm sitting by myself as I am now I

just feel like there's extraspace between my ears and I'm a bit out of it.  I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)but it comes in spurts. I use my good moments well and put them together with other good moments.

Something I might have been able to do in one shot before I might break up into pieces, doing eachone at a time I feel good.  It is hard to tell the difference between encephalopathy and fatigue without physical testing but the

results of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, musclespasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms?

 If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencingthe results of severe fatigue? It can be so disabling with

similar results. Just hoping the best for you.  Cheers,Darrin 

To: Neurosarcoidosis@ yahoogroups. comFrom: shannon.stemple@ yahoo.comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

 

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/ stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.

Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

That sounds so, so familiar.

Cheers,

Darrin

To: Neurosarcoidosis From: mebramer@...Date: Fri, 26 Feb 2010 18:15:55 -0700Subject: Re: encaphalopathy question

Funny that so many mention that they cannot concentrate when so much is going on, I have that too, bad, my husband gets mad at me when he starts talking while I'm listening to TV, and he says "your going deaf" yet I really don't feel hearing is the issue. So I think I must have this problem too, man when I'm tired, it's hard to concentrate on anything, if I'm reading I find that I just read a whole page and don't have a clue what I read, so have to reread the page again. Hmmm, Marla

Hi , Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.I haven't been diagnosed with it but haven't been tested for it either. The signs are certainlythere. If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio becauselistening to both is just too difficult somehow. Unless I turn off the radio I can't understand theother person without intensely concentrating. I have similar issues in loud places like bars. Ina bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too muchsignal to process. I like to get things in writing nowadays. Otherwise people will explain somethingto me in detail and halfway through the conversation I'll realize I was supposed to be listening.Even when everything is quiet and I'm sitting by myself as I am now I just feel like there's extraspace between my ears and I'm a bit out of it. I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)but it comes in spurts. I use my good moments well and put them together with other good moments.Something I might have been able to do in one shot before I might break up into pieces, doing eachone at a time I feel good. It is hard to tell the difference between encephalopathy and fatigue without physical testing but theresults of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, musclespasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms? If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencingthe results of severe fatigue? It can be so disabling with similar results. Just hoping the best for you. Cheers,Darrin

To: Neurosarcoidosis From: shannon.stemple (AT) yahoo (DOT) comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

I am on 400 mg of Plaquenil daily, 15mg of Methotrexate once a week, then the Remicade every 28 days.

I have to take 1mg of Folic Acid daily, to keep the anemia at bay. I have a CBC and LFT (Liver Function test) done at every Remicade infusion. My liver counts have never been better-- so I am sure it is the Milk Thistle that keeps that in line. If I don't take it- I do have the flank pain that comes with liver inflammation.

I suspect that what you're feeling is the Plaquenil withdrawal. If they won't let you take that-- then I'd ask about upping the mg/kg on your Remicade. That or get the infusion a bit closer together. Does the spine pain get better after an infusion?

Can you use icepacks on the back of your neck to get that inflammation down? I find that helps me. I do have to be careful-- as too much coldness-- and my lungs go nuts. Our lungs need the warmth-- but can't handle it when it's hot out- go figure...

When they cut out my Plaquenil, it took a week for me to notice that I was going back into brain fog, and my weird random body pain spots lit up like they were on fire. So that told me that it was definately helping.

We cut back the MTX at later time, and I found my lungs went beserk. In fact, it was when I had pneumonia last year and had to stop all the immunosuppresants at once, that I ended up in the trouble I'm in now. I've decided that the inflammation that comes up prior to my infusion-- is more dangerous than taking the immunos when I'm not feeling good- or as now, when my lungs are full of fluid. What is happening is that the lungs are now so fibrosed, they are constantly producing mucus and it has to be coughed up- but it truly feels like I"m coughing up a lung.. So I am hav ing to surrender to a pred 40, 30, 20, 10 (2days at each level) to calm the cough.

Let the doc know that this pain started as you stopped the Plaq-- and make sure he keeps a close eye on your liver functions. Also, get the prescription strength Folc Acid--as it is more likely to be the strength it says it is. Vitamin companies like to tweak the amounts-- so getting it over the counter is not a good idea.

I really need to look up what vitamins/minerals to take together-- as most multi-vitamin supplements are in such a combo that you lose the benefit of alot of them. Schwarzbein addresses that issue very nicely.

Get consistent with the Milk Thistle-- I use LivaTonic-- and it works well for me.

Hugs,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Fri, February 26, 2010 5:19:32 PMSubject: Re: encaphalopathy question

Tracie, I am having terrible spine pain, starts at the base of my brain and goes down, I thought it was the cold, but my doctor reduced my plaquenil in half, after he put me back on the methotrexate, do you think that could be the spine pain??? I relate the Plaquenil to my skin and lungs, and my lungs are good, but my skin is going crazy, lesions popping up all over, and now the spine pain. Are you on all 3 drugs, that is what scares my doc. Blessings, Marla

On Thu, Feb 25, 2010 at 1:34 PM, tracie feldhaus <tiodaat2001@ yahoo.com> wrote:

,

I can totally relate. What has helped me was the plaquenil-- it did make it so I could function a bit more clearly-- but also it took away some of the inflammation in my spine-- so I suspect that I am having some inflammation in the spinal fluid.

When we added the Remicade-- it was amazing-- I was able to really see a difference for a 3 of the 4 wks between infusions.

One of the ways I've learned to cope with this is to play Mahjongg on my computer. AARP has some excellant free games-- jigsaw puzzles, find a word, cards, etc. The concentration practice helps.

I also find that too much sound stimulus, and I'm literally in a panic. But I do find myself up at all hours of the night-- so it is a good time to read. The tv, dogs, husband are all asleep, and I can sit in total silence and actually comprehend what I'm reading. I've also found that when I'm on overload, if I come back into my "cave" and make some beaded jewelry. I don't do much of the advanced stuff, but I do have some great bracelets and necklaces that are made from some wonderful gems and minerals and glass beads. It seems to calm me down, and you really can't screw up-- if you do, it's "free-form!"

Fatigue does make it so much worse-- so pacing myself is very important.

In the Message Archives, is an article by Epilepsy docs-- and really addresses the seizures and brain fog issues we experience.

Much of it is from vasculitis-- when the blood vessels and nerves are inflammed, whatever the vessel is pressing on- is impaired while that inflammation is there- it also makes for it to be an intermittent problem.

Here is the site"

http://professional s.epilepsy. com/page/ inflammatory_ sardcoidosis. html

Anything you can do to find that you are working your brain-- will help keep the signals working better-- so even if you have to start with the simple puzzles, etc-- do it! Have someone help you with paying bills, etc-- if that becomes a problem. I know that was one of the hardest things for me, to surrender the finances, but it had to be for awhile, so that I wasn't bouncing checks.

Take care,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Thu, February 25, 2010 8:05:34 AMSubject: RE: encaphalopathy question

Hi , Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.I haven't been diagnosed with it but haven't been tested for it either. The signs are certainlythere. If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio becauselistening to both is just too difficult somehow. Unless I turn off the radio I can't understand theother person without intensely concentrating. I have similar issues in loud places like bars. Ina bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too muchsignal to process. I like to get things in writing nowadays. Otherwise people will explain somethingto me in detail and halfway through the conversation I'll realize I was supposed to be listening.Even when everything is quiet and I'm sitting by myself as I am now I

just feel like there's extraspace between my ears and I'm a bit out of it. I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)but it comes in spurts. I use my good moments well and put them together with other good moments.Something I might have been able to do in one shot before I might break up into pieces, doing eachone at a time I feel good. It is hard to tell the difference between encephalopathy and fatigue without physical testing but theresults of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, musclespasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms? If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencingthe results of severe fatigue? It can be so disabling with

similar results. Just hoping the best for you. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: shannon.stemple@ yahoo.comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/ stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.

[Guest guest]

,

I've been dealing with the brain fog and loss of executive functions for the last 8 yrs. What I have found helped me the most was playing word search games, MahJongg online, and jigsaw puzzles. www.AARP.org has a wonderful free game section-- and you can really find alot of whatever helps you. It's the concentration and repetition that seems to help.

What is interesting to me is that I was the most unartistic person on earth prior to the sarc taking over my brain-- and I had No interest in art. Now, I make some of the most beautiful beaded jewelry, and I love it!

If you want me to make brownies- forget it-- I can screw it up by putting the mix in the baking dish prior to mixing it up (and explain it here that this is what i do) but then I can't figure out how to fix the problem. Since chocolate is part of the "brown" food group-- this is not a good thing!

My guys love it when I tell them I want spaghetti for dinner, and that we have a jar of applesauce in the cupboard--so it's just a matter of heating it up. I guess that one is the "red" food group.

What I did find was that when I got control of my blood sugar, and got control of my pain-- truly by finding the right combo of immunosuppressants for me, and watch that I don't get dehydrated-- alot--ALOT of my brainfog and pain went away. Getting my diabetes in check has helped immensely with the nerve pain issues.

WWW.sarcoidosissharma.com is a great site for info on medication options, dosage, etc. So are the brochures at FSR-- www.stopsarcoidosis.org aka Foundation for sarcoidosis Research. You can get the first one free, then it is a minimal charge for addl copies. Well worth the investment.

One of the major causes of the brain fog is not only the sarcoidosis, but that our pain levels are high, and not appropriately controlled. Antidepressants can really help in pain control, due to the fact that when you are in pain-- you don't sleep. If you don't sleep, your seratonin and norephineprine levels are out of balance, so you feel the depression. Then the depression worsens the pain-- and now you are in a "pain cycle."

Many of us have the brain fog-- but no encephalopathy, and no granulomas on the brain. Many of us do have Peripheral Nervous System involvement. The brain functions with both CNS-- controlling the Central Nervous System, and the PNS-- Peripheral Nervous System.

CNS controls body function, hormones, heartrate, body temperature-- etc. PNS controls nerve function signals to make your extremities function. For me, the PNS is effected and literally my skin can be painful to even air touching it. We've also found that I can pick up a coffee cup-- and have it spill on my hands-- but the reaction to let go is way too slow. I've had to really learn to make myself pay close attention when I'm doing something that can cut or injure me. Alot of sensations are lost-- including (sadly) orgasm. Damn.

You asked if there are answers- and yes-- there is. It is going to require that your docs be willing to put you on DMARDS (Disease Modifing AntiRhematic Drugs) like Imuran, Arava, and Methotrexate. You will probably need more than one.

Generally they start with prednisone-- and have you taper off it-- DO NOT STOP TAKING PRED WITHOUT TAPERING IT DOWN--- EVER! YOU WILL PUT YOURSELF INTO AN ADRENAL CRISIS!

What they know now is that for all of us that started with pred, once they take us off it, we go right back into flare. So they are really looking at needing to add a steroid sparing anti-inflammatory, then a DMARD, then if necessary, a BRM-- Biological Response Modifier--ie. Enbrel, Humira, Cellcept, Remicade.

WWW.arthritistoday.org has a great drug edition that comes out yearly-- and I spend the $20 buck for that alone. The magazine also gives me a wonderful reference of how to manage my sarc and the sarc induced arthritis issues. You can access it online-- and like I said-- it's the BEST!

Realize that as you try each medication-- you'll have some successes and some failures. You have to do it one medication at a time, so that if you have a problem, you know what is causing it. With all these meds, it is best to titrate them up and down-- to withdraw them quickly is so painful. But it does let you know if they were working on something!

Hope this helps,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis " <neurosarcoidosis >Sent: Fri, February 26, 2010 7:30:06 PMSubject: RE: encaphalopathy question

That sounds so, so familiar. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: mebramer (AT) gmail (DOT) comDate: Fri, 26 Feb 2010 18:15:55 -0700Subject: Re: encaphalopathy question

Funny that so many mention that they cannot concentrate when so much is going on, I have that too, bad, my husband gets mad at me when he starts talking while I'm listening to TV, and he says "your going deaf" yet I really don't feel hearing is the issue. So I think I must have this problem too, man when I'm tired, it's hard to concentrate on anything, if I'm reading I find that I just read a whole page and don't have a clue what I read, so have to reread the page again. Hmmm, Marla

Hi , Some of us call it 'cog fog', either because it's easier to type or because it's less threatening.I haven't been diagnosed with it but haven't been tested for it either. The signs are certainlythere. If I'm in the car, someone is speaking, and the radio is on, I have to turn off the radio becauselistening to both is just too difficult somehow. Unless I turn off the radio I can't understand theother person without intensely concentrating. I have similar issues in loud places like bars. Ina bar, even if I'm not having a conversation, I get a bit disoriented as if there's just too muchsignal to process. I like to get things in writing nowadays. Otherwise people will explain somethingto me in detail and halfway through the conversation I'll realize I was supposed to be listening.Even when everything is quiet and I'm sitting by myself as I am now I

just feel like there's extraspace between my ears and I'm a bit out of it. I feel like I'm still capable of what I was before (as long as it doesn't require interaction with others)but it comes in spurts. I use my good moments well and put them together with other good moments.Something I might have been able to do in one shot before I might break up into pieces, doing eachone at a time I feel good. It is hard to tell the difference between encephalopathy and fatigue without physical testing but theresults of each seem to be very similar. Encephalopathy often also involves myoclonic jerks, musclespasms, and tremors, all of which I've had. I'm curious as to whether you've had any of those symptoms? If they did not do physical tests and you don't have the additional symptoms is it possible you're experiencingthe results of severe fatigue? It can be so disabling with

similar results. Just hoping the best for you. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: shannon.stemple@ yahoo.comDate: Thu, 25 Feb 2010 08:18:05 +0000Subject: encaphalopathy question

Hi all. I do not get to visit very often but everyone is in my thoughts. I have good news and bad news. Would like to getinput from others. Well for the good news, yesterday I finallyreceived approval for Social Security permanent disability based on Neurosarcoid/ stroke. Now the bad, I had a neuro psych eval. and my results were consistent with encephalopathy caused by neurosarc. Severe cognitive dysfunction. Well I guess I knew I was getting worse but when a doctor looks at you with shock and says, Im sorry but.... and then shakes his head in a sort of horror ,disbelief, reality becomes harsh.Has anyone else been diagnosed with encephalopathy. I am becoming less capable of executive functions and really hope that it resolves. Any input would be greatly appreciated. I hope everyone is hanging in there.