Question

[Guest guest]

Rose, the neurosurgeon said he would be because of increased cranial pressure as it would be controlled by a microchip this time and it would take time for then to get it regulate it out and a month is generally the time period that is needed to figure out what pressure I can deal with. Also they will need to keep the inflammation down from the sarcoid with my higher dose of methotrexate. He gives me phenergan but then I want to sleep all the time, I will just have to see how it goes. My son went with me this last time to the doctor and bless his heart he is 18 an really does not know what to ask I don't guess. I knew I forget easily, I should have wrote it down. I have to go for a EKG Monday and I am going to drop by his office and get a sheet on everything. Your friendly Texan Jeana

Question

Good morning, I think, I have a question???? Do any of you know if they have come out with any definitive tests on cerebrospinal fluid or MRI that can help them in determing the difference between MS or NS. They are supposed to set me up with a neurologist while I am in the hospital or do I need another doctor with the neurosurgeon. Oh yeah did I mention I also have gall stones. I know they aren't going to mess with them right now but I will have to have them taken care of later on. You would think I have never had surgery before as anxious as I am. I think because this time is the first time the neurosurgeon has told me I was really going to be sick for about a month, I feel like I have already been sick enough so what does he mean by I am really going to be sick, oh yea so I get to be sicker than usual with my stomach, nausea blah blah blah. Any one out there with info on the tests I mentioned please let me know and what the levels should or should not be. I hope everyone is feeling great today and can have a really enjoyable day. Your friendly Texan Jeanna ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives and Digest Attachment Pictures:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:-Add a website URL you have found useful.http://groups.yahoo.com/group/Neurosarcoidosis/linksPersonal Complaints or problems:-Please email the moderatorsmailto:Neurosarcoidosis-owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email.To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/joinTo subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you!~~~~ *** ~~~ *** ~~~ *** ~~~~Come stand by my side where I am going,Take my hand if I should stumble and fall,It's the strength and love that you share,That gives me what I need most of all.- Hoyt Axton~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

I

HATE the “you need to get some exercise” line. I find the same thing; I try and then pay for

it. I wish I had the answer to that one

too. My exercise is just getting through

the day. Today I walked my daughter to a

party, like 3 houses away, but then stood in the sun talking with a neighbor

for about 45 mins.

then came home and slept for 3 hours, I’m sure it was more the sun

thing then the walk, but those are just daily things we should be able to take

for granted??

I get

terrible “FACE” sweats, anyone hear of or have that?? I have heard of the temp, but have never had

a problem with that, even when I am very, very sick I rarely run a temp. good luck in finding your answers and

if you do, share them with us.

Love

and prayers,

Marla

Question

Hi

Group,

again. My neuro told me I should get some exercise. I told him that

I had not really exercised in 2 years. And that when I did I would get

terribly sick.. You know - achy, fatigue, low grade fever. He said that

since I had not worked out in a long time it was sort of like " working

the kinks out " . To just keep at it. Well, I went for a walk last

Mon. ( just around the corner mind you ) and was in bed for almost 2 days with

fever of 99.7. I told him this and he of course had not explanation for

it. What should I do ? Should I see a Rheum or Immun ? I printed

Aisha's information on NS to give to my neurologist. He does have other

NS patients. What makes your fingers and toes ache specifically ?

What causes the low-grade fever ? Can it be stopped ? Stupid

question ?

~~~~ *** ~~~ ***

~~~ *** ~~~~

The Neurosarcoidosis Community

Live Group Chat:-

Mondays & Fridays 10pm EST USA

http://www.elderwyn.com/neurosarcoidosis/chat.php

Message Archives and Digest Attachment Pictures:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant

messengers.

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

Bookmarks:-

Add a website URL you have found useful.

http://groups.yahoo.com/group/Neurosarcoidosis/links

Personal Complaints or problems:-

Please email the moderators

mailto:Neurosarcoidosis-owner

Subscription Details:-

1) Individual email - means that every email sent

to the list you receive.

2) Daily Digest - sends you 25 messages in one single

email for you to browse. This is an excellent option if you receive alot of

email.

3) Web only/No mail - means that you can pop into

eGroups at your convenience and receive no email.

To modify your subscription settings please

visit:-

http://groups.yahoo.com/group/Neurosarcoidosis/join

To subscribe email

neurosarcoidosis-subscribe

To unsubscribe email

neurosarcoidosis-unsubscribe

The moderators will not be doing it for you!

~~~~ *** ~~~ *** ~~~ *** ~~~~

Come stand by my side where I am going,

Take my hand if I should stumble and fall,

It's the strength and love that you share,

That gives me what I need most of all.

- Hoyt Axton

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

What makes your fingers and toes ache specifically ? Probably granulomas in the joints, or just increased inflammation. Also, when on pred, is leaches the calcium from your system, so -for me, the bone and joint, muscle pain increases.

What causes the low-grade fever ? Inflammation, primarily. Our body thinks that something is in it that it needs to attack, so the immune system starts cooking--with fever--sending white cells to wherever it thinks it needs them, and is now in hyperdrive.

Can it be stopped ? Honestly, I've run a fever for the last 3 years, constantly. I use ibuprofen, Tylenol, Methotrexate, Plaquenil, and my system hasn't yet surrendered. But it will, don't know when- . Stupid question ? Nope. We don't have any stupid questions--we ocme up with some whopper of answers, but no stupid questions.

With compassion,

Tracie

____________________

Tracie is not a medical professional. I am a nice lady, with a love for gnomes. The info I share here is what I've learned on my journey, and should not be used to replace what your MD suggests you do. May your journey be gentle.

[Guest guest]

Hi Group,I had a big scare last week and I'm still a little confused. I was having chest pain and heart palpitations (still am) and my neuro sent me for a CT of the chest. It came back with something called blebs and bulla (air pockets in the lung). I was assured this was not sarcoidosis. He said it sort of looked like emphysema but it didnt really fit the pattern of that disease. He sent me to a pulmonlogist. He said the same and that my lmyph nodes were a little inflammed, but no sarc. He said the sacs were at the top of my lungs. We did a pulmonary function test and he then said my breathing was fine and I did not have emphysema. He said that sometimes you just have these things in your lungs. He said they could be genetic. He said they could have always been there and may be aggravated by smoking. I told him I only smoke 3-5 cigarettes a day. Anyway, I am currently on 17 1/2 mg of pred. I currently have a small lesion at the skull base. Has anyone ever heard of anything like this ? I mean - why did'nt the doctors at MD say anything about this when they did a CT 2 years ago ? S.P.S. I am going to see a cardio next week.

[Guest guest]

Tammy~

I was dx'd with RRMS in 1985. In 1999, that's when I started noticing that the MS had started to progress. I had a relapse, had to stop working and still haven't gone back. Not for lack of trying. I'm still trying.

My neuro told me last Nov. that I had progressed into PPMS. Then, in Feb. when I went back to see him, he told me it was RRMS. Of course that was *after* he had gotten my records from a previous neuro I had fired. I should never have let him send for those records. One of the reasons I fired her was because she had a revolving door policy. I didn't feel like she was listening to me or trying to help. She was just so happy to see me waddle into her office and fork over her $65.00 for the 5 minute session that she allotted me. And though that may sound like an exaggeration, I can assure you, it isn't.

So, I have now hired me a GP. I'm having every test in the book done, a complete physical. Of course, he'll know I have MS, but I'm hoping that I may get a good referral for a neuro while I'm at it.

The good news is. IF I haven't progressed...I will have had RRMS for 22yrs. Also, if I haven't progressed, I'm hoping they'll find the reason why I have all these other symptoms that I've been chalking up to MS. Maybe, it will be curable! LOL

I don't how to mentally prepare for what lies ahead, except keep yourself informed and learn as much as you can about your own body. Then, you'll know when there something "not right".

Love and blessings...Val

question

I have to ask those of you dx'd with RRMS.....How long before you progressed to PPMS? I know it is different for everyone. Has anyone ever not progressed to PPMS from RRMS and just stayed the same? Is that possible? Or do I need to face reality that eventually I must accept the fate of PPMS or worse? I just need some honesty. The web sites tell you that everyone is different and that their MS progresses differently. I know that. I get that. It's like preganancy, no 2 are alike. I just want to know the possibilities I may face because some of you have already been there. Starting to face some obstacles b/c of this MonSter and I think mentally and emotionally I need to prepare for what lies ahead. Not only for me but for my family.

Thanks for your input!

Tammy, Tx

Need a relaxing massage and think you can't afford it? YES YOU CAN! Email me today and find out just how affordable it is! tamatha_tx

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[Guest guest]

You've been going through this for years now, haven't you? Challis Trista wrote: I would like to know if anyone here gets intermittent low grade fevers, and or swollen and tender lymph nodes? I started out with a low grade fever, and enlarged and tender lymph nodes a few weeks ago. It lasted for about 3 days. And after the lymph nodes went down, I continued to get the fevers every day. I read that this is a sx of CFIDS, and I've had

it before, but just assumed I was coming down with something. Anyone??? ~*Trista*~ CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise! Re: tomorrow >>> Hi Cassy! Gee! I just read about YOUR day with the >>> TTT...and also Akiba's silly and funny mis-read! lol! Now

THAT would be some >>> test, huh? don't think insurance covers> that one Akiba! rofl! >>> I'm glad > your test is over..but more than that--I am >>> > thrilled to hear that they most likely have a definite dx for you--you have >>> been more than patient with this! What a wait! >>> It is a big "phew" that dental stuff is done, at least > >>> that 'chapter'. The pain from having it > pulled, is still, > unfortunately, >>> with me. I'm trying hard to not take the vicodin, but, I'm thinking I might >>> just need to take one. ONly > problem is, it makes me real sleepy.. >>> Church was busy, but I did have help. Singing and guitar >>> playing went pretty well. The coffee 'duty' is a bit more tedious, as >>> besides setting up tables, you have to take them down, take the table cloths >>> off--and bring them home and wash them for next

sunday--although we have >>> many different table cloths at church. Now I'm> home and I'm getting the: >>> 'what are we doing > today'?...ugghh. .I tried > calling my sis who has a >>> condo with a pool! But she hasn't answered my call yet...we'll see bout >>> that! I just wish I could send them all off with my oldest--to go to the >>> town pool, or a movie..just > so I can take my pain med and sleep! love to > >>> > you..keep us posted Cassy--when do you go next to the doc? >>> ~kate >>> >>> >>> HEy Kate. Im so glad the > dentist went ok. And a nice cutie too! lol. >>> Jk. Im glad the nightmare is over. Take it easy. Sounds like you have a busy >>> day today. Have fun and be careful. hugz,cassy >>> . >>> >> ____________ _________ _________ _________ _________ _________ _ >> Pinpoint

customers who are looking for what you sell. >> http://searchmarket ing.yahoo. com/ >> Be a better > Globetrotter. Get better travel > answers from someone who knows. Yahoo! Answers - Check it out. >> > ____________ _________ __________________ _________ _________ _ > Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. > http://autos. yahoo.com/ carfinder/ > Fussy? > Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. > ____________ _________ _________ _________ _________ _________ _ > Pinpoint customers who are looking for what you sell. http://searchmarket ing.yahoo. com/ > Ready for the edge of your seat? > Check out tonight's top picks on Yahoo! TV. > ____________ _________ _________ _________ _________ _________ _ Luggage? GPS? Comic books? Check

out fitting gifts for grads at Yahoo! Search http://search. yahoo.com/ search?fr= oni_on_mail & p=graduation+ gifts & cs= bz > Choose the right car based on your needs. > Check out Yahoo! Autos new Car Finder tool. > ____________ _________ _________ _________ _________ _________ _ Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.http://tv.yahoo. com/collections/ 222 > Luggage? GPS? Comic > books? > Check out fitting gifts for grads at Yahoo! Search. > ____________ _________ _________ _________ _________ _________ _ Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. http://farechase. yahoo.com/ Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out. > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and

lay it on us. > ____________ _________> _________ _________ _________ _________ _ Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos & more. http://mobile. yahoo.com/ go?refer= 1GNXIC > Sick sense of humor? Visit Yahoo! TV's > Comedy with an Edge to see what's on, when. > Got a little couch potato? > Check out fun summer activities for kids. > ____________ _________ _________ _________ _________ _________ _ Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink. yahoo.com/ gmrs/yahoo_ panel_invite. asp?a=7 > Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center. > __________________________________________________________Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder

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[Guest guest]

Yes, it started 5 years ago. It comes and goes, like all my other sx's. They seem to like to trade off. It's been awhile since I've had this sx.

~*Trista*~

CFIDS/FM ~ Educate yourself.My disabling chronic illness is more real, than your imaginary medical expertise!

Re: tomorrow >>> Hi Cassy! Gee! I just read about YOUR day with the >>> TTT...and also Akiba's silly and funny mis-read! lol! Now THAT would be some >>> test, huh? don't think insurance covers> that one Akiba! rofl! >>> I'm glad > your test is over..but more than that--I am >>> > thrilled to hear that they most likely have a definite dx for you--you have >>> been more than patient with this! What a wait! >>> It is a big "phew" that dental stuff is done, at least > >>> that 'chapter'. The pain from having it > pulled, is still, > unfortunately, >>> with me. I'm trying hard to not take the vicodin, but, I'm thinking I might >>> just need to take one. ONly > problem is, it makes me real sleepy.. >>> Church was busy, but I did have help. Singing and guitar >>> playing went pretty well. The coffee 'duty' is a bit more tedious, as >>> besides setting up tables, you have to take them down, take the table cloths >>> off--and bring them home and wash them for next sunday--although we have >>> many different table cloths at church. Now I'm> home and I'm getting the: >>> 'what are we doing > today'?...ugghh. .I tried > calling my sis who has a >>> condo with a pool! But she hasn't answered my call yet...we'll see bout >>> that! I just wish I could send them all off with my oldest--to go to the >>> town pool, or a movie..just > so I can take my pain med and sleep! love to > >>> > you..keep us posted Cassy--when do you go next to the doc? >>> ~kate >>> >>> >>> HEy Kate. Im so glad the > dentist went ok. And a nice cutie too! lol. >>> Jk. Im glad the nightmare is over. Take it easy. Sounds like you have a busy >>> day today. Have fun and be careful. hugz,cassy >>> . >>> >> ____________ _________ _________ _________ _________ _________ _ >> Pinpoint customers who are looking for what you sell. >> http://searchmarket ing.yahoo. com/ >> Be a better > Globetrotter. Get better travel > answers from someone who knows. Yahoo! Answers - Check it out. >> > ____________ _________ __________________ _________ _________ _ > Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. > http://autos. yahoo.com/ carfinder/ > Fussy? > Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. > ____________ _________ _________ _________ _________ _________ _ > Pinpoint customers who are looking for what you sell. http://searchmarket ing.yahoo. com/ > Ready for the edge of your seat? > Check out tonight's top picks on Yahoo! TV. > ____________ _________ _________ _________ _________ _________ _ Luggage? GPS? Comic books? Check out fitting gifts for grads at Yahoo! Search http://search. yahoo.com/ search?fr= oni_on_mail & p=graduation+ gifts & cs= bz > Choose the right car based on your needs. > Check out Yahoo! Autos new Car Finder tool. > ____________ _________ _________ _________ _________ _________ _ Sick sense of humor? Visit Yahoo! TV's Comedy with an Edge to see what's on, when.http://tv.yahoo. com/collections/ 222 > Luggage? GPS? Comic > books? > Check out fitting gifts for grads at Yahoo! Search. > ____________ _________ _________ _________ _________ _________ _ Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. http://farechase. yahoo.com/ Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out. > Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. > ____________ _________> _________ _________ _________ _________ _ Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos & more. http://mobile. yahoo.com/ go?refer= 1GNXIC > Sick sense of humor? Visit Yahoo! TV's > Comedy with an Edge to see what's on, when. > Got a little couch potato? > Check out fun summer activities for kids. > ____________ _________ _________ _________ _________ _________ _ Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink. yahoo.com/ gmrs/yahoo_ panel_invite. asp?a=7 > Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center. > __________________________________________________________Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool.http://autos.yahoo.com/carfinder/

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