Re: Tysabri..how are you doing?

January 11, 2008

I promise to be good Sharon - I am spending the weekend on the couch under the quilt - the visit to the neuro pooped me out - it also did something the the hemangioma and the last three days have been rough - I am calling to tell him - so a quiet week end for me.

Tysabri..how are you doing?

how is anyone on Tysabri doing. I guess I'm about to start. on metho for five days and will start Tysabri in a couple weeks. had a brain mri this morning and the dr. called me an hour later. wow. basically got me in by noon and showed me all the new lesions. He basially said "we gotta do something and do something now" and I was thinking...hmmm.. no shit. Just kidding. I love my neuro. he heMindy

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January 11, 2008

Doing ok Mindy on Tysabri. I notice that for 2 wks after I have it,

I real good, then the 2nd 2 wks, I go down hill. Like now, I'm

waiting for infusion next Friday and feel I'm in a flare up right

now. Hands and arms tingling and numb from elbows down and

clumsy and hard to type. I can barely play my guitar, and I'm

supposed to play on Sunday in the band. Left leg is like not there.

Can barely feel it or my foot. It's a 'drag' ha! rofl! no shit sherlock!

bless you dear, love, Kate

Tysabri..how are you doing?

how is anyone on Tysabri doing. I guess I'm about to start. on metho for five days and will start Tysabri in a couple weeks. had a brain mri this morning and the dr. called me an hour later. wow. basically got me in by noon and showed me all the new lesions. He basially said "we gotta do something and do something now" and I was thinking...hmmm.. no shit. Just kidding. I love my neuro. he heMindy

January 11, 2008

At least you HAVE a Neuro...there is NO local Neuro who will take my insurance, if I want one I will have to go to GB (that's Green Bay, not Great Britain) so I told them that'll have to wait till Spring, I am housebound with the ice outside (even Rob slipped on it!) So I guess I just have to hurt till then, since the GP said she won't help my pain and there is nobody else. Hopefully I *can* still walk by then, this ankle gets worse daily, it seems...it is like walking on a broken ankle...so guess I'm s.o.l. till then... Ask Kate about tysabri. Hugs Akiba -- Tysabri..how are you doing? how is anyone on Tysabri doing. I guess I'm about to start. on metho for five days and will start Tysabri in a couple weeks. had a brain mri this morning and the dr. called me an hour later. wow. basically got me in by noon and showed me all the new lesions. He basially said "we gotta do something and do something now" and I was thinking...hmmm.. no shit. Just kidding. I love my neuro. he heMindy

January 11, 2008

My gosh, You have to wait till spring? I am so sorry for you. And then you can get anything for the pain. I think you must demand it or go to the hospital, they will probably give you something via IV an scripts bcs you dont have anything. I wish you the best of luck and let me know what happens pls. Hugs, :)Akiba wrote: At least you HAVE a Neuro...there is NO local Neuro who will take my insurance, if I want one I will have to go to GB (that's Green Bay, not Great Britain) so I told them that'll have to wait till Spring, I am housebound with the ice outside (even Rob slipped on it!) So I guess I just have to hurt till then, since the GP said she won't help my pain and there is nobody else. Hopefully I *can* still walk by then, this ankle gets worse daily, it seems...it is like walking on a broken ankle...so guess I'm s.o.l. till then... Ask Kate about tysabri. Hugs Akiba -- Tysabri..how are you doing? how is anyone on Tysabri doing. I guess I'm about to start. on metho for five days and will start Tysabri in a couple weeks. had a brain mri this morning and the dr. called me an hour later. wow. basically got me in by noon and showed me all the new lesions. He basially said "we gotta do something and do something now" and I was

thinking...hmmm.. no shit. Just kidding. I love my neuro. he heMindy Peace, Love and Hugs, D.

January 11, 2008

I have Motrin 800's. That'll just have to do I guess till then. And my script for Lyrica is in, just a matter of getting there to Get them... There's always the liquor store in town (tee-hee me so bad...) hugs Akiba -- Tysabri..how are you doing? how is anyone on Tysabri doing. I guess I'm about to start. on metho for five days and will start Tysabri in a couple weeks. had a brain mri this morning and the dr. called me an hour later. wow. basically got me in by noon and showed me all the new lesions. He basially said "we gotta do something and do something now" and I was thinking...hmmm.. no shit. Just kidding. I love my neuro. he heMindy Peace, Love and Hugs, D.

January 11, 2008

AM so sorry. Try to demand something or go to the hospital or another doctor for your pain pls. Hugs, :)Akiba wrote: I have Motrin 800's. That'll just have to do I guess till then. And my script for Lyrica is in, just a matter of

getting there to Get them... There's always the liquor store in town (tee-hee me so bad...) hugs Akiba -- Tysabri..how are you doing? how is anyone on Tysabri doing. I guess I'm about to start. on metho for five days and will start Tysabri in a couple weeks. had a brain mri this morning and the dr. called me an hour later. wow. basically got me in by noon and showed me all the new lesions. He basially said "we gotta do something and

do something now" and I was thinking...hmmm.. no shit. Just kidding. I love my neuro. he heMindy Peace, Love and Hugs, D. Peace, Love and Hugs, D.

January 11, 2008

It is an ice skating rink outside. If I fall, I WILL have to go to the hospital. So if I can't do it on the phone or the net, I can't DO it till the thaw. Hugs Akiba -- Tysabri..how are you doing? how is anyone on Tysabri doing. I guess I'm about to start. on metho for five days and will start Tysabri in a couple weeks. had a brain mri this morning and the dr. called me an hour later. wow. basically got me in by noon and showed me all the new lesions. He basially said "we gotta do something and do something now" and I was thinking...hmmm.. no shit. Just kidding. I love my neuro. he heMindy Peace, Love and Hugs, D. Peace, Love and Hugs, D.

January 11, 2008

LoL! I loved your lil smilies! Think they may be a bit tipsey? Hehe.

How far do you gotta go to get the Lyrica? Im goin on Tegretol tomorow.

Hope theres no side effects.take care k.

luv n hugz,cassy

Tysabri..how

are you doing? how is anyone on Tysabri doing. I guess I'm about

to start. on metho

for five days and will start Tysabri in a couple weeks. had a brain

mri this morning and the dr. called me an hour later. wow. basically

got me in by noon and showed me all the new lesions. He basially

said " we gotta do something and do something now " and I was

thinking...hmmm.. no shit.

Just kidding. I love my neuro. he he

Mindy

Peace, Love and Hugs, D.

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January 11, 2008

It's a 30 mile r.t. to get them (only 3m to the likker-store *hic*) Just kidding...aside from occasional glass of wine or a beer...(or 3). Hopefully Rob will be able to go tomorrow, or Mon. Hugs Akiba -- Tysabri..how are you doing? how is anyone on Tysabri doing. I guess I'm about to start. on methofor five days and will start Tysabri in a couple weeks. had a brainmri this morning and the dr. called me an hour later. wow. basicallygot me in by noon and showed me all the new lesions. He basiallysaid "we gotta do something and do something now" and I wasthinking...hmmm.. no shit.Just kidding. I love my neuro. he heMindyPeace, Love and Hugs, D. #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2__________________________________________________________More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com

January 11, 2008

I hope so! But hey! 3 is way better then 30! Lol. If I didnt take so

much meds id love to have a few drinks. Miss being able to.

hugz,cassy

Tysabri..how

are you doing? how is anyone on Tysabri doing. I guess I'm about

to start. on metho

for five days and will start Tysabri in a couple weeks. had a brain

mri this morning and the dr. called me an hour later. wow. basically

got me in by noon and showed me all the new lesions. He basially

said " we gotta do something and do something now " and I was

thinking...hmmm.. no shit.

Just kidding. I love my neuro. he he

Mindy

Peace, Love and Hugs, D.

#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2

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January 12, 2008

Boy, with the pain I am in iwth this Carpel Tunnel I would drink (even though I don't) if it helped but I am on too many meds too. Feel better! Hugs, :)payngabby@... wrote: I hope so! But hey! 3 is way better then 30! Lol. If I didnt take so much meds id love to have a few drinks. Miss being able to. :(hugz,cassy Tysabri..howare you doing? how is anyone on Tysabri doing. I guess I'm aboutto

start. on methofor five days and will start Tysabri in a couple weeks. had a brainmri this morning and the dr. called me an hour later. wow. basicallygot me in by noon and showed me all the new lesions. He basiallysaid "we gotta do something and do something now" and I wasthinking...hmmm.. no shit.Just kidding. I love my neuro. he heMindyPeace, Love and Hugs, D. #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2__________________________________________________________More new features than ever. Check out the new AOL Mail ! -http://webmail.aol.com#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8__________________________________________________________More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com Peace, Love and Hugs, D.

January 12, 2008

Akiba,

Dr. Shein wont take your insurance? or is it . I can't

remember. I know my neuro is not taking new patients right now (Dr.

).

Do you know anybody that needs some Avonex that maybe has some

insurance problems. I'm all done and have six shots left and we all

know that's like $1800. I could probably go to jail just for

offering..he he.

Chin up!

Mindy

> It's a 30 mile r.t. to get them (only 3m to the likker-store *hic*)

>

> Just kidding...aside from occasional glass of wine or a beer...(or

3).

> Hopefully Rob will be able to go tomorrow, or Mon.

>

> Hugs

>

> Akiba

>

> --

Tysabri..how

>

> are you doing? how is anyone on Tysabri doing. I guess I'm about

>

> to start. on metho

>

> for five days and will start Tysabri in a couple weeks. had a brain

>

> mri this morning and the dr. called me an hour later. wow.

basically

>

> got me in by noon and showed me all the new lesions. He basially

>

> said " we gotta do something and do something now " and I was

>

> thinking...hmmm.. no shit.

>

> Just kidding. I love my neuro. he he

>

> Mindy

>

> Peace, Love and Hugs, D.

>

> #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2

>

> #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2

>

> #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2

>

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>

January 12, 2008

I think it's Shein, that sounds familiar~~~whoever it is, is in IM. I heard nothing about the Avonex "fingers in ears" LALALALALAAAaa. I need pain meds more then anything else, my ankle is like walking on broken glass...and Dr. G passed the buck (and hasn't even called me back!!) Good luck with the Tysabri, if you go that route...Do Your Homework first!! Hugs Akiba -- Tysabri..how > > are you doing? how is anyone on Tysabri doing. I guess I'm about > > to start. on metho> > for five days and will start Tysabri in a couple weeks. had a brain> > mri this morning and the dr. called me an hour later. wow. basically> > got me in by noon and showed me all the new lesions. He basially> > said "we gotta do something and do something now" and I was> > thinking...hmmm.. no shit.> > > > Just kidding. I love my neuro. he he> > > > Mindy> > > > Peace, Love and Hugs, D. > > > > #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2> > > > #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2> > > > #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2> > > > __________________________________________________________> > More new features than ever. Check out the new AOL Mail ! - > > http://webmail.aol.com>

January 13, 2008

Hi Everyone,

Can you guys help me....I'm trying to keep up on the emails but I'm looking at the subject line and it has nothing to do with it and It's hard, having cogniive and all......Is there someone here that asked about Tysabri???? If so make sure the subject line says Tysabri and everyone else make sure they are responding to the subject line...........

-- Tysabri..how > > are you doing? how is anyone on Tysabri doing. I guess I'm about > > to start. on metho> > for five days and will start Tysabri in a couple weeks. had a brain> > mri this morning and the dr. called me an hour later. wow. basically> > got me in by noon and showed me all the new lesions. He basially> > said "we gotta do something and do something now" and I was> > thinking...hmmm.. no shit.> > > > Just kidding. I love my neuro. he he> > > > Mindy> > > > Peace, Love and Hugs, D. > > > > #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2> > > > #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2> > > > #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2> > > > __________________________________________________________> > More new features than ever. Check out the new AOL Mail ! - > > http://webmail.aol.com>

January 13, 2008

Yup. Kinda a shame we cant drink. I wouldnt mind getting the numbing

effects alcohol causes. I was never a big drinker. Would go several

yrs. Without 1 even socially. Never liked the way it made me feel.

Except in high school of course.lol. It is those memories that makes me

think it would numb the pain and etc. From this stupid disease. I

remember when I was a teenager the 1st time I ever got drunk.I fell and

busted my arm open it needed stitches badly but i didnt go the

hospital.Anyways,I didnt feel a thing. Here I was with this huge open

wound bleeding all over the place and I was laughing!lol. Still have

that scar.

hugz,cassy

Tysabri..how

are you doing? how is anyone on Tysabri doing. I guess I'm about

to

start. on metho

for five days and will start Tysabri in a couple weeks. had a brain

mri this morning and the dr. called me an hour later. wow. basically

got me in by noon and showed me all the new lesions. He basially

said " we gotta do something and do something now " and I was

thinking...hmmm.. no shit.

Just kidding. I love my neuro. he he

Mindy

Peace, Love and Hugs, D.

#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2

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January 13, 2008

While the "numbing effect" might be nice, the hangover isn't lol...only making the pain wait till morning, and bringing friends...I had a friend in Jr Jigh that dies from alcohol OD, drank himself to death with gin...yukk (can't stand gin) But, yes, I Do partake in a wee tiddly from time to time...(Never "hard stuff" though...only "hard stuff" I even like is jaegermeister, and Rob likes Crown Royal (I like the bags it comes with) Hugs Akiba -- Tysabri..howare you doing? how is anyone on Tysabri doing. I guess I'm abouttostart. on methofor five days and will start Tysabri in a couple weeks. had a brainmri this morning and the dr. called me an hour later. wow. basicallygot me in by noon and showed me all the new lesions. He basiallysaid "we gotta do something and do something now" and I wasthinking...hmmm.. no shit.Just kidding. I love my neuro. he heMindyPeace, Love and Hugs, D. #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2__________________________________________________________More new features than ever. Check out the new AOL Mail ! -http://webmail.aol.com#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8__________________________________________________________More new features than ever. Check out the new AOL Mail ! -http://webmail.aol.comPeace, Love and Hugs, D. #AOLMsgPart_2_b3a9536a-02f0-4922-b68c-c0267c766350#AOLMsgPart_2_b3a9536a-02f0-4922-b68c-c0267c766350#AOLMsgPart_2_b3a9536a-02f0-4922-b68c-c0267c766350__________________________________________________________More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com

January 14, 2008

The bags are cute hu? Lol. Ya.hangovers suck. Im sorry about your

friend Akiba. how sad. Sometimes people dont realize what it can do

to them. I wouldnt mind getn a lil tipsy though. Jus like back in the

day. Well,to late id for sure od with all the meds im on. Not even 1

drink for me id be to scared.lol.

hugz,cassy

Tysabri..how

are you doing? how is anyone on Tysabri doing. I guess I'm about

to

start. on metho

for five days and will start Tysabri in a couple weeks. had a brain

mri this morning and the dr. called me an hour later. wow. basically

got me in by noon and showed me all the new lesions. He basially

said " we gotta do something and do something now " and I was

thinking...hmmm.. no shit.

Just kidding. I love my neuro. he he

Mindy

Peace, Love and Hugs, D.

#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2

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January 14, 2008

None of the meds I am on are the kind you *can't* drink on...if..IF...I ever get some decent pain meds they probably will be, though... Neurontin was one, but I went off it, for two reasons...one, to take enough to *do* anything, I'd have to take it like candy, and two...it made me think bad thoughts and do/say weird things...like I'd have whole discussions with Rob about what he will do when I die...and I'd not remember a word of it later! When I was on a combo of rebif and neurontin, it got SO bad Rob called 911 and I spent a lovely night on suicide watch in the local ER...went to the Neuro a few days later and he took me OFF them as of NOW (this was about 4 years ago), been a bit leery of neurontin ever since... Hugs Akiba -- Tysabri..howare you doing? how is anyone on Tysabri doing. I guess I'm abouttostart. on methofor five days and will start Tysabri in a couple weeks. had a brainmri this morning and the dr. called me an hour later. wow. basicallygot me in by noon and showed me all the new lesions. He basiallysaid "we gotta do something and do something now" and I wasthinking...hmmm.. no shit.Just kidding. I love my neuro. he heMindyPeace, Love and Hugs, D. #AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2#AOLMsgPart_3_40470562-eac3-4630-bc82-5fbf34252ac2__________________________________________________________More new features than ever. Check out the new AOL Mail ! -http://webmail.aol.com#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8#AOLMsgPart_3_a129814f-7c2b-4683-b237-85c21e034fc8__________________________________________________________More new features than ever. Check out the new AOL Mail ! -http://webmail.aol.comPeace, Love and Hugs, D. #AOLMsgPart_2_b3a9536a-02f0-4922-b68c-c0267c766350#AOLMsgPart_2_b3a9536a-02f0-4922-b68c-c0267c766350#AOLMsgPart_2_b3a9536a-02f0-4922-b68c-c0267c766350__________________________________________________________More new features than ever. Check out the new AOL Mail ! -http://webmail.aol.com#AOLMsgPart_3_6c883b5a-2e67-4c99-9c06-60c8ec57acec#AOLMsgPart_3_6c883b5a-2e67-4c99-9c06-60c8ec57acec#AOLMsgPart_3_6c883b5a-2e67-4c99-9c06-60c8ec57acec__________________________________________________________More new features than ever. Check out the new AOL Mail ! - http://webmail.aol.com

January 14, 2008

Neurontin did not work for my peripheral neuropathy, and it

gave me uncontrollable diarrhea! It was not difficult to give

it up!

Glad that you know when and what to say " No! " to, though,

Akiba!

However, pain just IS depressing!

Love to you, and to all in our group having pain,

more love,

more n

> None of the meds I am on are the kind you *can't* drink on...if..IF...I ever

> get some decent pain meds they probably will be, though...

> Neurontin was one, but I went off it, for two reasons...one, to take enough

> to *do* anything, I'd have to take it like candy, and two...it made me think

> bad thoughts and do/say weird things...like I'd have whole discussions with

> Rob about what he will do when I die...and I'd not remember a word of it

> later! When I was on a combo of rebif and neurontin, it got SO bad Rob

> called 911 and I spent a lovely night on suicide watch in the local

> ER...went to the Neuro a few days later and he took me OFF them as of NOW

> (this was about 4 years ago), been a bit leery of neurontin ever since...

> Hugs

> Akiba

January 14, 2008

Wow Akiba! I can see why you dont want to take the neurontin. I wouldnt

take it. You would think the doc knowing this could help you out. How

scary all that musta been. Ambulance and psych ward. Scary,especially

not remembering conversations. Ya.im not to big a fan of neurontin. I

can take a ton and get absolutely NO relief!Sucks. Just got my Tegretol

2 days ago and havnt started yet.I am hesitating due to all the side

effects.My doc went over some but then I got the med insert from the

pharmacy.Says it lowers the blood cells that help fight infecton.My 9

yr.old always brings sumthn from school(colds,flu etc)Also have to have

liver checked,and says it has rarely caused a severe decrease in bone

marrow function.There is literally 10 things under WARNING and a

million possible side effects.Oh and it interferes with birth

control.Im really needing to take it especially for the TN but I am

kinda scared.I have so many health problems already.I dunno.There jus

sitn here till I decide.lol.

hugz,cassy

Tysabri..how

are you doing? how is anyone on Tysabri doing. I guess I'm about

to

start. on metho

for five days and will start Tysabri in a couple weeks. had a brain

mri this morning and the dr. called me an hour later. wow. basically

got me in by noon and showed me all the new lesions. He basially

said " we gotta do something and do something now " and I was

thinking...hmmm.. no shit.

Just kidding. I love my neuro. he he

Mindy

Peace, Love and Hugs, D.

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Re: Tysabri..how are you doing?

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