Re: NS.- Have you had proplems with fatigue? - belltown_mac

[Guest guest]

Tracie,

I hear what you're saying but it makes me very sad. I feel defeated by what my life has become with this illness. I'm at a loss as to how to proceed. I thought if I did certain things I could cure myself. I thought if I sat still and waited it would pass. I tried to convince myself that it wasn't real.

I've been waiting for almost three years now and I'm still sick. I don't know how to live with this. I've been fighting it with everything I have for 3 years. I don't know how to deal with the ups and downs of this. I don't know how to deal with the uncertainty of everyday. I don't know how to handle not knowing where my life is going.

Re: NS.- Have you had proplems with fatigue? - belltown_mac

Matt,Fatigue with this disease is huge. More rest, more fluids, more rest-- is how most of us get thru this. It becomes all about pacing yourself, instead of making that extra stop at the 2nd grocery place, and then a quick stop at the mall, and stop to gas up the car-=- many of us have to make the grocery stop and go home. Then on a different day, we go to the mall or to the MD's and go home. Then we make a stop for gas-- and go home. It may not be as effective as what we used to do when we could multi-task-- but it does make it so we can get thru each day a bit easier.As far as SSDI info-- check the archives, this is a subject that comes up over and over, and there is alot of info there.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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]

Kim,

I think I'm going through a flare now. I'm confused about it. I was really sick and could get out of bed. Then I got better. Now I don't feel so hot. It's funny I don't feel like eating or drinking anything. I feel like I'm in some sort of stupor. My ears ache, my toes hurt, blah,, blah...

Re: NS.- Have you had proplems with fatigue? - belltown_mac

Dear :I have dealt with extreme fatigue from the beginningof my wonderful neurosarc experience. before themeds, and then again after them. so i know theneurosarc was the cause before the meds and it wasthose times that the fatigue was the worst, it was a"sick unhealthy fatigue" that i have learned very wellto distinguish from med fatigue. with some meds ithink they cause fatigue at the beginning of theirtreatments but that it "wears off" as you getaccustomeed to taking them, like neurontin or topomax,etc. others like the immunosuppresents or chemos, ithink that fatigue sticks around and is more adraining fatigue. during flare ups i experience myinitial overall complete exhaustion like i had priorto any meds. no amount of rest or sleep will quenchthat exhaustion. i think it is common to neurosarcand probably autoimmune diseases in general. the onlyway i have found to deal with it is to listen to mybody and rest, other wise i end up in a flareup thatit takes forever to get control of, kind of like i amgoing through irght now. just have to learn to paceyoruself and stick to your new set of self limitationseven when you feeling "OK" so as overtime you do notend up tiring yourself out. look at the picture overthe course of the week and balance your rest time thatway if you have to. if you know on monday you havethis adn this and this, okay, be active on monday, butthen on tuesday wednesday, and thursday do nothing. iguess thats how i balance myself now. hope that was helpful.take care, and i dont have experience with the ssdi. sorry.--- belltown_mac wrote:> > I was wondering if other people were experiencing> extreme fatigue> from either the meds > or the NS, I find that I have some days were I can> barely get out of> bed in the morning I > feel so drained. If others are experiencing this> problem how do they> deal with it. > On another subject, was also wondering if anyone> else is having> trouble getting SSDI, and > what they are doing about it. Any advice on either> of these subjects> would be greatly > appreciated. > > > > __________________________________ Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web http://birthday.yahoo.com/netrospective/

[Guest guest]

Fatigue is always huge to deal with...Being on the

meds it is so much better. There are days whhen

sleeping or lounging around is all you can do.

--- belltown_mac wrote:

>

> I was wondering if other people were experiencing

> extreme fatigue

> from either the meds

> or the NS, I find that I have some days were I can

> barely get out of

> bed in the morning I

> feel so drained. If others are experiencing this

> problem how do they

> deal with it.

> On another subject, was also wondering if anyone

> else is having

> trouble getting SSDI, and

> what they are doing about it. Any advice on either

> of these subjects

> would be greatly

> appreciated.

>

>

>

>

__________________________________

Celebrate Yahoo!'s 10th Birthday!

Yahoo! Netrospective: 100 Moments of the Web

http://birthday.yahoo.com/netrospective/

[Guest guest]

Hi ,

Yes, the extreme fatigue is part of the Sarc Monster! I have really extreme fatigue

and the only thing I know of for treatment is REST. I have always needed only about

4 to 5 hours sleep at night and never slept through the day (all my life) until I got this

Sarc Monster. Now, whether it is the Sarc Monster or the meds ------I am exhausted

after being up about 2 hours and a 2 hour nap in the afternoon is becoming more and more

common with me. Glad to see you posting. The archives has lots of info in it so feel

free to browse and I am sure you will get lots of replies from our members.

Take care.......

Hugs,

Darlene Arney

Co-Owner/Moderator

NS.- Have you had proplems with fatigue? - belltown_mac

I was wondering if other people were experiencing extreme fatiguefrom either the meds or the NS, I find that I have some days were I can barely get out ofbed in the morning I feel so drained. If others are experiencing this problem how do theydeal with it. On another subject, was also wondering if anyone else is havingtrouble getting SSDI, and what they are doing about it. Any advice on either of these subjectswould be greatly appreciated. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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]

,

This is Lynne Z. here. As Lynne M. said fatigue is a great big theing with all of us. I als osuffer from neuro sarc, and I have been to the point of drained also. In the morning, try to get yourself in the shower, with a cup of coffee, if you don't drink coffee, try to keep the juices flowing. Orange juice, apple juice & whatever you like. Try to make this a routine, as you r body needs to be redirected now. Also, make this "your time". If you like to sit in the tub, then do so, reading a daily Bible passage, or whatever makes you relax.

Believe it or not, helping your body to relax will actually give you more energy, b/c you let your tired aching musclesrelax without much pain while your body tries to catch up. Again,,,"your time". Hope this helps.

Lots of Love

LynneLynne wrote:

Fatigue is always huge to deal with...Being on themeds it is so much better. There are days whhensleeping or lounging around is all you can do.--- belltown_mac wrote:> > I was wondering if other people were experiencing> extreme fatigue> from either the meds > or the NS, I find that I have some days were I can> barely get out of> bed in the morning I > feel so drained. If others are experiencing this> problem how do they> deal with it. > On another subject, was also wondering if anyone> else is having> trouble getting SSDI, and > what they are doing about it. Any advice on either> of these

subjects> would be greatly > appreciated. > > > > __________________________________ Celebrate Yahoo!'s 10th Birthday! Yahoo! Netrospective: 100 Moments of the Web http://birthday.yahoo.com/netrospective/~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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]

Matt, PLEASE listent to Tracie and the rest of us, you can not let yourself feel defeated by this or any other diesease. It is okay, ALWAYS OKAY, to come to us as friends and vent, rant, rave, shout, cry, and utililize any emotion that will get you through the moment. But remember YOU ARE NOT your DISEASE. You are MATT. And right now Matt is in pain and hurting, and fot that I am sorry. I was diagnosed with lupus and fibromyalgia 10 years ago. For the last four years I have been in neurologic limbo (the cleanest word I can think of this early in the morning) while the doctors discuss NA, NS, MS, and even more less desirable neurodegenerative diseases. There are days I don't want to get out of bed, days I can't, day's I won't, day's I do. But the most important, is I have days, and no matter what the doctors eventually call this monster I have, I will still be me, and I will still have to find a way to get through the

days. So Matt, don't give up, don't despair, you are not alone. Come to us anytime, we understand, we have been there. I am a firm believer in the saying "You can not lead where you have not been". So while the doctors may give us medicines that help the symptoms, your friends here, in this groups, will help your soul, we have been, are there, we understand, won't tell you your time is up, won't tell you it's in your head, and we'll be here.

So heads up, if it doesn't hurt, and know that there are a lot of people out here who care. Given all of this, how can you dispair? Just remember, rant to us, we have ranted to others and have lived to tell about it!!

Cherokee wrote:

Tracie,

I hear what you're saying but it makes me very sad. I feel defeated by what my life has become with this illness. I'm at a loss as to how to proceed. I thought if I did certain things I could cure myself. I thought if I sat still and waited it would pass. I tried to convince myself that it wasn't real.

I've been waiting for almost three years now and I'm still sick. I don't know how to live with this. I've been fighting it with everything I have for 3 years. I don't know how to deal with the ups and downs of this. I don't know how to deal with the uncertainty of everyday. I don't know how to handle not knowing where my life is going.

Re: NS.- Have you had proplems with fatigue? - belltown_mac

Matt,Fatigue with this disease is huge. More rest, more fluids, more rest-- is how most of us get thru this. It becomes all about pacing yourself, instead of making that extra stop at the 2nd grocery place, and then a quick stop at the mall, and stop to gas up the car-=- many of us have to make the grocery stop and go home. Then on a different day, we go to the mall or to the MD's and go home. Then we make a stop for gas-- and go home. It may not be as effective as what we used to do when we could multi-task-- but it does make it so we can get thru each day a bit easier.As far as SSDI info-- check the archives, this is a subject that comes up over and over, and there is alot of info there.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for

now.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]

Matt, PLEASE listent to Tracie and the rest of us, you can not let yourself feel defeated by this or any other diesease. It is okay, ALWAYS OKAY, to come to us as friends and vent, rant, rave, shout, cry, and utililize any emotion that will get you through the moment. But remember YOU ARE NOT your DISEASE. You are MATT. And right now Matt is in pain and hurting, and fot that I am sorry. I was diagnosed with lupus and fibromyalgia 10 years ago. For the last four years I have been in neurologic limbo (the cleanest word I can think of this early in the morning) while the doctors discuss NA, NS, MS, and even more less desirable neurodegenerative diseases. There are days I don't want to get out of bed, days I can't, day's I won't, day's I do. But the most important, is I have days, and no matter what the doctors eventually call this monster I have, I will still be me, and I will still have to find a way to get through the

days. So Matt, don't give up, don't despair, you are not alone. Come to us anytime, we understand, we have been there. I am a firm believer in the saying "You can not lead where you have not been". So while the doctors may give us medicines that help the symptoms, your friends here, in this groups, will help your soul, we have been, are there, we understand, won't tell you your time is up, won't tell you it's in your head, and we'll be here.

So heads up, if it doesn't hurt, and know that there are a lot of people out here who care. Given all of this, how can you dispair? Just remember, rant to us, we have ranted to others and have lived to tell about it!!

Cherokee wrote:

Tracie,

I hear what you're saying but it makes me very sad. I feel defeated by what my life has become with this illness. I'm at a loss as to how to proceed. I thought if I did certain things I could cure myself. I thought if I sat still and waited it would pass. I tried to convince myself that it wasn't real.

I've been waiting for almost three years now and I'm still sick. I don't know how to live with this. I've been fighting it with everything I have for 3 years. I don't know how to deal with the ups and downs of this. I don't know how to deal with the uncertainty of everyday. I don't know how to handle not knowing where my life is going.

Re: NS.- Have you had proplems with fatigue? - belltown_mac

Matt,Fatigue with this disease is huge. More rest, more fluids, more rest-- is how most of us get thru this. It becomes all about pacing yourself, instead of making that extra stop at the 2nd grocery place, and then a quick stop at the mall, and stop to gas up the car-=- many of us have to make the grocery stop and go home. Then on a different day, we go to the mall or to the MD's and go home. Then we make a stop for gas-- and go home. It may not be as effective as what we used to do when we could multi-task-- but it does make it so we can get thru each day a bit easier.As far as SSDI info-- check the archives, this is a subject that comes up over and over, and there is alot of info there.Tracie ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for

now.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]

Hi ,

I think all of us have fatigue issues ... and it is caused by both, the meds and the disease.

I deal with it by sleeping when I have to. It became a real problem when I was working since I would fall sound asleep right in the middle of working. I have been out of work since last April. I am currently seeking SSDI via an attorney. You must get an attorney!...at least that is what I have been told -- I've been told by my doctors that "you will never get SSDI without an attorney and a psychiatrist ... don't ask me why the latter, but I got one ... and meet with her next week for the first time -- I had to see the counselor first who makes the determination if you need to see the dr. -- which I do, if nothing more than med management ... the counselor is good to have ... very good, since most of us, if not all, are depressed, trying to live and cope with a chronic illness that no one understands except those of us with it. SSDI attorneys do not charge anything up front (if you find one that does, go elsewhere!) ... however, they do take a portion of the money once you get a win. I have been told that if under 50, one is almost always denied SSI the first time around; when appealed, most likely denied the second time around; and then when in front of the judge with your attorney, the judge will usually grant SSDI assuming the judge has all medical documentation verifying you are sick and unable to work. I hope others respond with other info I may not have include and do not know myself!

Hope that helps,

Joan

I was wondering if other people were experiencing extreme fatiguefrom either the meds or the NS, I find that I have some days were I can barely get out ofbed in the morning I feel so drained. If others are experiencing this problem how do theydeal with it. On another subject, was also wondering if anyone else is havingtrouble getting SSDI, and what they are doing about it. Any advice on either of these subjectswould be greatly appreciated.

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

[Guest guest]

, Joan, and Kim,

Since I am still new to all of this, are all of you saying that NS has flares similiar to those I experience with my lupus? I haven't been eating recently, mostly because I don't remember to eat, and secondly because it hurts to swallow. I am remembering to drink water and lots of organic green tea, but then of course my brain doesn't get the message that my bladder is full, so I have to wear a timer around my neck to remind me to go potty every to hours while I am awake. But, I literally am not hungry, everything aches, I have a cough that won't go away, and an elephant in sitting on my chest. Does this sound like a NS flare to the three of you?

Cherokeepickstands@... wrote:

,

You forgot a few more "...blah, blah, blah's" ... all of my flares leave me with lots of "this hurts, that hurts, I never felt that hurt before....great a new part of the body to add to each flare ... blah, blah, blah ...

damn, this ugly diseae...

, you really do need to force yourself to drink ... lots of water, maybe some milk thistle tea (thank you Tracie!...I've been drinking a cup every night), and at least some soup and crackers ... I know the thought of food just makes you feel one more "blah", but you do need to keep some kind of nutrients in your body so that you can, at some point, slowly pull yourself up and "live" ... before the next flare...

(When I am feeling the way you are, I have my dad or husband fix me some chicken noodle soup or tomato soup, some applesauce, a piece of toast or crackers, and a cup of tea ... you just have to eat and drink something...pleae.)

Joan

Kim,

I think I'm going through a flare now. I'm confused about it. I was really sick and could get out of bed. Then I got better. Now I don't feel so hot. It's funny I don't feel like eating or drinking anything. I feel like I'm in some sort of stupor. My ears ache, my toes hurt, blah,, blah...

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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]

cherokee,

this is probably an ignorant question or maybe you

wrote about it before. but, how have they ruled out

neuro involvement of your lupus?

--- cherokeetlingit wrote:

> , Joan, and Kim,

>

> Since I am still new to all of this, are all of you

> saying that NS has flares similiar to those I

> experience with my lupus? I haven't been eating

> recently, mostly because I don't remember to eat,

> and secondly because it hurts to swallow. I am

> remembering to drink water and lots of organic green

> tea, but then of course my brain doesn't get the

> message that my bladder is full, so I have to wear a

> timer around my neck to remind me to go potty every

> to hours while I am awake. But, I literally am not

> hungry, everything aches, I have a cough that won't

> go away, and an elephant in sitting on my chest.

> Does this sound like a NS flare to the three of you?

>

> Cherokee

>

> pickstands@... wrote:

> ,

>

> You forgot a few more " ...blah, blah, blah's " ...

> all of my flares leave me with lots of " this hurts,

> that hurts, I never felt that hurt before....great a

> new part of the body to add to each flare ... blah,

> blah, blah ...

>

> damn, this ugly diseae...

>

> , you really do need to force yourself to

> drink ... lots of water, maybe some milk thistle tea

> (thank you Tracie!...I've been drinking a cup every

> night), and at least some soup and crackers ... I

> know the thought of food just makes you feel one

> more " blah " , but you do need to keep some kind of

> nutrients in your body so that you can, at some

> point, slowly pull yourself up and " live " ... before

> the next flare...

>

> (When I am feeling the way you are, I have my dad or

> husband fix me some chicken noodle soup or tomato

> soup, some applesauce, a piece of toast or crackers,

> and a cup of tea ... you just have to eat and drink

> something...pleae.)

>

> Joan

>

> In a message dated 3/3/2005 3:34:59 A.M. Eastern

> Standard Time, darrow123@... writes:

> Kim,

>

> I think I'm going through a flare now. I'm confused

> about it. I was really sick and could get out of

> bed. Then I got better. Now I don't feel so hot.

> It's funny I don't feel like eating or drinking

> anything. I feel like I'm in some sort of stupor.

> My ears ache, my toes hurt, blah,, blah...

>

>

>

>

>

>

> " I believe that friends are quiet angels who lift us

> to our feet when our wings have trouble remembering

> how to fly. "

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

> NS CHAT:- Has been cancelled for now.

>

> 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]

,

no question is ignorant. They haven't ruled out anything. The rheumatologists are CONVINCED, based on who knows what, that this is not related to my lupus, the neurologists just don't have a clue. I am in the land of no one wants to step up to the plate and take the lead in diagnosing my very challenging, their words - not mine- case. According to the rheumatologist the lupus is in remission, she has me on only 3mg of pred a day and 200mg tid of plaquenil.

Cherokeekimberly alostad wrote:

cherokee,this is probably an ignorant question or maybe youwrote about it before. but, how have they ruled outneuro involvement of your lupus? --- cherokeetlingit wrote:> , Joan, and Kim,> > Since I am still new to all of this, are all of you> saying that NS has flares similiar to those I> experience with my lupus? I haven't been eating> recently, mostly because I don't remember to eat,> and secondly because it hurts to swallow. I am> remembering to drink water and lots of organic green> tea, but then of course my brain doesn't get the> message that my bladder is full, so I have to wear a> timer around my neck to remind me to go potty every> to hours while I am awake. But, I literally am

not> hungry, everything aches, I have a cough that won't> go away, and an elephant in sitting on my chest. > Does this sound like a NS flare to the three of you?> > Cherokee> > pickstands@... wrote:> ,> > You forgot a few more "...blah, blah, blah's" ...> all of my flares leave me with lots of "this hurts,> that hurts, I never felt that hurt before....great a> new part of the body to add to each flare ... blah,> blah, blah ...> > damn, this ugly diseae...> > , you really do need to force yourself to> drink ... lots of water, maybe some milk thistle tea> (thank you Tracie!...I've been drinking a cup every> night), and at least some soup and crackers ... I> know the thought of food just makes you feel one> more "blah", but you do need to keep some kind of> nutrients in your body

so that you can, at some> point, slowly pull yourself up and "live" ... before> the next flare...> > (When I am feeling the way you are, I have my dad or> husband fix me some chicken noodle soup or tomato> soup, some applesauce, a piece of toast or crackers,> and a cup of tea ... you just have to eat and drink> something...pleae.)> > Joan> > > Kim,> > I think I'm going through a flare now. I'm confused> about it. I was really sick and could get out of> bed. Then I got better. Now I don't feel so hot. > It's funny I don't feel like eating or drinking> anything. I feel like I'm in some sort of stupor. > My ears ache, my toes hurt, blah,, blah...> > > >

> > > "I believe that friends are quiet angels who lift us> to our feet when our wings have trouble remembering> how to fly." > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > NS CHAT:- Has been cancelled for now.> > 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]

, Joan, and Kim,

Since I am still new to all of this, are all of you saying that NS has flares similiar to those I experience with my lupus? YES!..all of sarc comes and goes in "flares"...some have flares that last weeks, months, even years. I haven't been eating recently, mostly because I don't remember to eat, and secondly because it hurts to swallow. Use that timer to remind you to eat!...Sarc causes swallowing issues in some as well ... I had a swallowing problem when my pulm. sarc was active ... thus far, with NS, I haven't had the problem. I am remembering to drink water and lots of organic green tea, but then of course my brain doesn't get the message that my bladder is full, so I have to wear a timer around my neck to remind me to go potty every to hours while I am awake. Have you had an MRI on your Thoracic Spine?...there could be several issues causing your bladder problems...you should have a T-Spine MRI to be safe it isn't something very serious! But, I literally am not hungry, everything aches, I have a cough that won't go away, and an elephant in sitting on my chest. Does this sound like a NS flare to the three of you? When you describe the above, this is what I experience during a Pulmonary Sarc flare.

Cherokee, you should print out your e-mails and take them to your doctor visits ... this way, you won't forget to tell them anything ... take a file of e-mails for them to read ... explain to them that these are your health issues written to your support group ... if they don't want to read them, find new docs!...if you don't want to share the e-mails for any reason, create a list of "medical issues" and pull your symptoms from your e-mails ... add each one to the list and give them to EVERY doctor you see ... since various issues require various Specialist's attention, you don't want any doctor to miss anything. Hope this all helps, ... and set that timer to remind you to eat!...even if is just soup and applesauce!...Joan

Cherokee

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

[Guest guest]

,

no question is ignorant. They haven't ruled out anything. The rheumatologists are CONVINCED, based on who knows what, that this is not related to my lupus, the neurologists just don't have a clue. (What?!?!...a Neuro that doesn't have a clue?...Well, isn't that unusual!!!...Seriously, you are very lucky if your neuro admits he/she has no clue vs. one that claims to and dx'es you incorrectly ... which is what I had a problem with ... as my PCP put it, "Neuro's have a difficult field ... and when they can't pinpoint something, they either guess, usually incorrectly; tell you there is nothing wrong with you; or keep sending you elsewhere, realizing you are out of their league ... Neuro's really do freighten me ... for so many reasons) I am in the land of no one wants to step up to the plate and take the lead in diagnosing my very challenging, their words - not mine- case. (I, too, had the same problem ... all my doc's suspected NS, but since they couldn't find the exact place of it, no one wanted to be the one to tell me ... again, my PCP's words ... my PCP said, "no one wants to be the one to make the dx 1) because it is a horrible dx to give someone; and 2) because if they are wrong, well...no explanation needed." When I found my sarc specialist, she knew immediately and dx'ed it on my first visit ... which my insurance co. scuffled at ... she is a Pulmonary dr. by field, but has been researching and writing papers on NS for years (as is the same with the infamous Dr. Baughmann ... then, she sent me for a brain MRI which my Neuro should have done on my first visit to him, and they found lesions and a previous stroke ... now, we are scuffling at all the doc's and insurance companies ... oh, at least that is what I thought ... until they all said my lesions aren't "typical" of NS ... fortunately, my sarc specialist isn't afraid of her own brain! and is treating me appropriately as if I had NS. Cherokee, this is a very frustrating disease to deal with ... beginning with the initial and proper dx ... I went to Univ. of Pa and saw a neuro there ... this is how "up on NS he is" ... he said, "I can't confirm nor exclude these lesions as NS lesions; and Perhipheral Neuropathy is not associated with NS since it is outside the CNS" ... I got up and walked out of his office at that point ... any dr., any good dr. that is, at least knows that PN IS ABSOLUTELY ASSOCIATED WITH NS!!! ... We all realize that I don't have CNS NS - thank God!, but we all realize I do have NS ... at least my good doc's. -- but that dr. at UofPa really still freightens me ... I hope no one ever takes his word for anything!) According to the rheumatologist the lupus is in remission, she has me on only 3mg of pred a day and 200mg tid of plaquenil. (it sounds like your symptoms have gotten worse after tapering down the prednisone?...that tells you that your body needs Methotrexate to start really battling your NS, assuming that is what you have.)

Cherokee, I hope your visit with Mayo goes well, and that you get a good dr., but I had one of the world's "supposedly" best at UofPa ... and look what happened to me ... fortunately, my sarc specialist is also another one of the world's best at Jefferson University Hospital, also in Philadelphia.

Good Luck,

Joan

Cherokee

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

[Guest guest]

Dear Cherokee:

I certainly have flares iwth my ns, though in between

i dont think i have ever felt really " free " of all

symptoms, especially the nerve pain and other types of

pain i deal with, though there are times that its

worse than others. I dont suffer with lung " symptoms "

as much as others, though I do pulmonary sarc, and

each time i have a ct, my lungs are worse. but i am

also shocked because my lungs are not symptomatic, the

only time they were was prior to my initial diagnosis

and treatment with prednisone. then they were very

very bad. the only thing i ever notice now is

shortness of breath.

but now with flares, my nightsweats, fevers, hairloss,

weightloss, weakness, and other neuro symptoms show up

again.

hope that is helpful.

Kim

--- cherokeetlingit wrote:

> , Joan, and Kim,

>

> Since I am still new to all of this, are all of you

> saying that NS has flares similiar to those I

> experience with my lupus? I haven't been eating

> recently, mostly because I don't remember to eat,

> and secondly because it hurts to swallow. I am

> remembering to drink water and lots of organic green

> tea, but then of course my brain doesn't get the

> message that my bladder is full, so I have to wear a

> timer around my neck to remind me to go potty every

> to hours while I am awake. But, I literally am not

> hungry, everything aches, I have a cough that won't

> go away, and an elephant in sitting on my chest.

> Does this sound like a NS flare to the three of you?

>

> Cherokee

>

> pickstands@... wrote:

> ,

>

> You forgot a few more " ...blah, blah, blah's " ...

> all of my flares leave me with lots of " this hurts,

> that hurts, I never felt that hurt before....great a

> new part of the body to add to each flare ... blah,

> blah, blah ...

>

> damn, this ugly diseae...

>

> , you really do need to force yourself to

> drink ... lots of water, maybe some milk thistle tea

> (thank you Tracie!...I've been drinking a cup every

> night), and at least some soup and crackers ... I

> know the thought of food just makes you feel one

> more " blah " , but you do need to keep some kind of

> nutrients in your body so that you can, at some

> point, slowly pull yourself up and " live " ... before

> the next flare...

>

> (When I am feeling the way you are, I have my dad or

> husband fix me some chicken noodle soup or tomato

> soup, some applesauce, a piece of toast or crackers,

> and a cup of tea ... you just have to eat and drink

> something...pleae.)

>

> Joan

>

> In a message dated 3/3/2005 3:34:59 A.M. Eastern

> Standard Time, darrow123@... writes:

> Kim,

>

> I think I'm going through a flare now. I'm confused

> about it. I was really sick and could get out of

> bed. Then I got better. Now I don't feel so hot.

> It's funny I don't feel like eating or drinking

> anything. I feel like I'm in some sort of stupor.

> My ears ache, my toes hurt, blah,, blah...

>

>

>

>

>

>

> " I believe that friends are quiet angels who lift us

> to our feet when our wings have trouble remembering

> how to fly. "

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

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>

> NS CHAT:- Has been cancelled for now.

>

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>

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>

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>

>

>

[Guest guest]

Is blah, blah, blah a synonim (is that right? I used to be a champion speller in my past life.) for yada, yada, yada? Tracie, where do you get milk thistle tea, or do you buy milk thistle & make your own tea? Are health food stores the best place to buy it? Why is the sky blue? What do cicadas think about during the 17 years they are in the ground? You are the Answer Lady, so I thought I'd ask something nonmedical for a change. Rose

Re: NS.- Have you had proplems with fatigue? - belltown_mac

,

You forgot a few more "...blah, blah, blah's" ... all of my flares leave me with lots of "this hurts, that hurts, I never felt that hurt before....great a new part of the body to add to each flare ... blah, blah, blah ...

damn, this ugly diseae...

, you really do need to force yourself to drink ... lots of water, maybe some milk thistle tea (thank you Tracie!...I've been drinking a cup every night), and at least some soup and crackers ... I know the thought of food just makes you feel one more "blah", but you do need to keep some kind of nutrients in your body so that you can, at some point, slowly pull yourself up and "live" ... before the next flare...

(When I am feeling the way you are, I have my dad or husband fix me some chicken noodle soup or tomato soup, some applesauce, a piece of toast or crackers, and a cup of tea ... you just have to eat and drink something...pleae.)

Joan

Kim,

I think I'm going through a flare now. I'm confused about it. I was really sick and could get out of bed. Then I got better. Now I don't feel so hot. It's funny I don't feel like eating or drinking anything. I feel like I'm in some sort of stupor. My ears ache, my toes hurt, blah,, blah...

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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 not an expert on flares. As far as I can figure, I've never had a remission & never got much worse in a short period of time. I feel like for me, it's a slow, steady decline. I can tell you that most of what you describe is like the symptoms I had when the systemic sarc first started. I don't know that I forgot to eat, but I just didn't have the energy to fix, eat & clean up (even a sandwich!). At work I would sleep through my lunch hour. As I kept losing weight, my friends badgered me about not eating lunch, so I took in cans of Boost. I'd slurp down a can, then sleep. At home, I drank milk, ate cereal & lots of microwave chicken pot pies. This went on for months, being blamed on a virus by my family doc. I also had the cough, which I thought was from my b/p med and/or my asthma. I don't remember the chest pressure. But sounds like you need to be evaluated. Rose

Re: NS.- Have you had proplems with fatigue? - belltown_mac

, Joan, and Kim,

Since I am still new to all of this, are all of you saying that NS has flares similiar to those I experience with my lupus? I haven't been eating recently, mostly because I don't remember to eat, and secondly because it hurts to swallow. I am remembering to drink water and lots of organic green tea, but then of course my brain doesn't get the message that my bladder is full, so I have to wear a timer around my neck to remind me to go potty every to hours while I am awake. But, I literally am not hungry, everything aches, I have a cough that won't go away, and an elephant in sitting on my chest. Does this sound like a NS flare to the three of you?

Cherokeepickstands@... wrote:

,

You forgot a few more "...blah, blah, blah's" ... all of my flares leave me with lots of "this hurts, that hurts, I never felt that hurt before....great a new part of the body to add to each flare ... blah, blah, blah ...

damn, this ugly diseae...

, you really do need to force yourself to drink ... lots of water, maybe some milk thistle tea (thank you Tracie!...I've been drinking a cup every night), and at least some soup and crackers ... I know the thought of food just makes you feel one more "blah", but you do need to keep some kind of nutrients in your body so that you can, at some point, slowly pull yourself up and "live" ... before the next flare...

(When I am feeling the way you are, I have my dad or husband fix me some chicken noodle soup or tomato soup, some applesauce, a piece of toast or crackers, and a cup of tea ... you just have to eat and drink something...pleae.)

Joan

Kim,

I think I'm going through a flare now. I'm confused about it. I was really sick and could get out of bed. Then I got better. Now I don't feel so hot. It's funny I don't feel like eating or drinking anything. I feel like I'm in some sort of stupor. My ears ache, my toes hurt, blah,, blah...

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.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]

When you have one autoimmune disease, you often have others. That's why so

many of us (not me, thank goodness) have fibromyalgia. I'm pretty sure

that's correct. Rose

Re: NS.- Have you had proplems with fatigue? -

belltown_mac

>

> cherokee,

> this is probably an ignorant question or maybe you

> wrote about it before. but, how have they ruled out

> neuro involvement of your lupus?

>

>

> --- cherokeetlingit wrote:

> > , Joan, and Kim,

> >

> > Since I am still new to all of this, are all of you

> > saying that NS has flares similiar to those I

> > experience with my lupus? I haven't been eating

> > recently, mostly because I don't remember to eat,

> > and secondly because it hurts to swallow. I am

> > remembering to drink water and lots of organic green

> > tea, but then of course my brain doesn't get the

> > message that my bladder is full, so I have to wear a

> > timer around my neck to remind me to go potty every

> > to hours while I am awake. But, I literally am not

> > hungry, everything aches, I have a cough that won't

> > go away, and an elephant in sitting on my chest.

> > Does this sound like a NS flare to the three of you?

> >

> > Cherokee

> >

> > pickstands@... wrote:

> > ,

> >

> > You forgot a few more " ...blah, blah, blah's " ...

> > all of my flares leave me with lots of " this hurts,

> > that hurts, I never felt that hurt before....great a

> > new part of the body to add to each flare ... blah,

> > blah, blah ...

> >

> > damn, this ugly diseae...

> >

> > , you really do need to force yourself to

> > drink ... lots of water, maybe some milk thistle tea

> > (thank you Tracie!...I've been drinking a cup every

> > night), and at least some soup and crackers ... I

> > know the thought of food just makes you feel one

> > more " blah " , but you do need to keep some kind of

> > nutrients in your body so that you can, at some

> > point, slowly pull yourself up and " live " ... before

> > the next flare...

> >

> > (When I am feeling the way you are, I have my dad or

> > husband fix me some chicken noodle soup or tomato

> > soup, some applesauce, a piece of toast or crackers,

> > and a cup of tea ... you just have to eat and drink

> > something...pleae.)

> >

> > Joan

> >

> > In a message dated 3/3/2005 3:34:59 A.M. Eastern

> > Standard Time, darrow123@... writes:

> > Kim,

> >

> > I think I'm going through a flare now. I'm confused

> > about it. I was really sick and could get out of

> > bed. Then I got better. Now I don't feel so hot.

> > It's funny I don't feel like eating or drinking

> > anything. I feel like I'm in some sort of stupor.

> > My ears ache, my toes hurt, blah,, blah...

> >

> >

> >

> >

> >

> >

> > " I believe that friends are quiet angels who lift us

> > to our feet when our wings have trouble remembering

> > how to fly. "

> >

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > The Neurosarcoidosis Community

> >

> > NS CHAT:- Has been cancelled for now.

> >

> > 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

> >

> >

> >