Re: (unknown)

[Guest guest]

Will do !!! I plan on doing a lot of nothing !!!!

[Guest guest]

So glad your first day went so well! Make sure and get some rest in this

weekend.

Hugs,

Cari and - JDMS

>From: catzmeowz@...

>Reply-To: OurMyositisegroups

>To: OurMyositisegroups

>Subject: Re: (unknown)

>Date: Thu, 4 Jan 2001 22:43:04 EST

>

>I survived my first day back with no setbacks !! It was really nice to see

>everyone again and feel like Im more than someone's Mom for 6 hours.

>Getting

>off at 2:00 rocks !!! I got a lot accomplished at home and was able to

>have

>dinner at a respectable hour. My energy level finally gave out about 8:00

>tonight and Im off to bed now so Ill be able to perform my encore tomorrow

>!!!

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

How odd! Glad I'm back to " normal " , so to speak! Computers definitely have

a mind of their own LOL.

Hugs, Cari

>From: TeddiFromOK@...

>Reply-To: OurMyositisegroups

>To: OurMyositisegroups

>Subject: Re: (unknown)

>Date: Thu, 4 Jan 2001 22:46:38 -0600 (CST)

>

>Hey Cari

>

>hehehehe....guess what?...you are back to

>normal size...who knows why?

>

>

>Teddi

>mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

How odd! Glad I'm back to " normal " , so to speak! Computers definitely have

a mind of their own LOL.

Hugs, Cari

>From: TeddiFromOK@...

>Reply-To: OurMyositisegroups

>To: OurMyositisegroups

>Subject: Re: (unknown)

>Date: Thu, 4 Jan 2001 22:46:38 -0600 (CST)

>

>Hey Cari

>

>hehehehe....guess what?...you are back to

>normal size...who knows why?

>

>

>Teddi

>mailto:teddifromok@...

>

>

>

>

>

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Glad to hear your first day back was a good one. I hope next week goes as well.

~~God Bless, Sherry~~

>From: catzmeowz@... >Reply-To: OurMyositisegroups >To: OurMyositisegroups >Subject: Re: (unknown) >Date: Thu, 4 Jan 2001 22:43:04 EST > >I survived my first day back with no setbacks !! It was really nice to see >everyone again and feel like Im more than someone's Mom for 6 hours. Getting >off at 2:00 rocks !!! I got a lot accomplished at home and was able to have >dinner at a respectable hour. My energy level finally gave out about 8:00 >tonight and Im off to bed now so Ill be able to perform my encore tomorrow !!! > Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

... your right.... the weather man needs to watch the weather

channel... It poured here today....

Hope everyone had a great day

Vicki

[Guest guest]

Well now, what I do at school with a couple of my students that share the same name is call them by their last name. Stein vs Old J ~~ I think I like Stein better. There is something about the word old that depresses me.

Love, Sherry

>From: "julie steinmuller"

>Reply-To: OurMyositisegroups >To: OurMyositisegroups >Subject: (unknown) >Date: Sat, 06 Jan 2001 20:02:53 -0000 > >Oh OKKKKKKKK. Old J. > Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi Sherry and ,

I agree with Sherry. Don't use the word " old "

with your name. It sounds so frumpy. Nobody should

sound frumpy. Hey, you could call me by my middle name

Lynn if that makes it easier. Get back to me. Jules or

Lynn?

---

__________________________________________________

[Guest guest]

Hi Fern, I'm so glad you finally posted. I have been so worried about

you. I'm so darn sorry you've been as sick as you are and for so long.

I hope the antibiotics work on you fast to bring you some relief. With

our immune systems being lowered you can pick up everything.

For years I have gotten kidney infections and was told to drink

Cranberry juice once a week. But it does work. I haven't had to get

any medication for it in a very long time. I know when it's coming on

and then drink the Cranberry juice for a couple days...until the bottle

is gone. By that time I'm back to normal.

I do feel for you... it's no fun being sick all the time. Number one

reason I try to stay at home most of the time. I'm so use to it right

now that I find it horrible to have to leave my property.... Hermit

comes to mind...

Anyway, take care of yourself.

Vicki

[Guest guest]

,

That is funny that two people thought was yours. He is indeed,

wholeheartedly mine.

Fern,

Great to hear from you. Hate that you have been having such a very hard

time. I hope the antibiotics work wonders for you. Keep us posted. We

have all been so worried.

Hugs,

Cari and - JDMS

>

>Reply-To: OurMyositisegroups

>To: OurMyositisegroups

>Subject: (unknown)

>Date: Sun, 07 Jan 2001 23:55:53 -0000

>

>So good to hear from you Fern!! I think of you daily and you're in my

>prayers. It sure would be interesting to see how you do eventually if

>you can take the doxy long term, as Connie said.

>BTW- I'd LOVE as a son, but I do think he belongs

>wholeheartedly to Cari, not me! stein (have to get used to

>that!)

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Stein,

Opps, fibro fog strikes again. I still get people mixed ups sometimes and I do know who you are. It is so crazy. I do appreciate your prayers. I do plan to ask the doctor about long term antibiotic therapy.

Gentle hugs,

Fern

[Guest guest]

Vicki,

My problem with catching the infection before it gets bad is that mine don't start with bladder symptoms and by the time my kidney is infected, it is too late to stop it without antibiotics. My body always does things the weird and backwards way. It is really frustrating. I eat a lot of cranberry sauce, but I am not too crazy about the juice.

I am obviously picking up everything right now. I have been staying home as much as possible even when I feel good so that I don't come into contact with anyone who is sick. The problem is that my children go to school and bring home every bug that is going around. My whole family has been fighting colds and flu bugs like crazy this year. It figures, the year I need them not to bring home bugs, is the year they catch everything that comes along. And trying to take care of sick males when you are sick is NO picnic!!!

Gentle hugs,

Fern

[Guest guest]

> ,

> That is funny that two people thought was yours. He is

indeed,

> And guess what, Cari?? I have not mentioned it yet, but just to

confuse matters more---- I DO have a stepson named ! He is 23

and a sweetheart. S.

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

> Stein,

>

> Opps, fibro fog strikes again. I still get people mixed ups

sometimes and I do know who you are. It is so crazy. I do

appreciate your prayers. I do plan to ask the doctor about long term

antibiotic therapy.

>

> Oh Fern, I am the same way and seem to be getting worse- re:

people mix-ups and forgetfulness and at times struggling to find the

right word for something. Terrible! People probably think I am wacky

or " on " something. Love S.

[Guest guest]

If his name is I am sure he is the sweetest 23 year old around! What

a coincidence.

Cari

>

>Reply-To: OurMyositisegroups

>To: OurMyositisegroups

>Subject: Re: (unknown)

>Date: Mon, 08 Jan 2001 13:09:05 -0000

>

>

> > ,

> > That is funny that two people thought was yours. He is

>indeed,

> > And guess what, Cari?? I have not mentioned it yet, but just to

>confuse matters more---- I DO have a stepson named ! He is 23

>and a sweetheart. S.

> > >

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at http://explorer.msn.com

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Yeah thats it !!! And i think Im going to heed those words too !!!!

My cats knead me !!!!

[Guest guest]

I have sufficently recovered from my enormous victory. Thank you.

I am coaching a minor girls league now, and we are 3-1. Yeah. The one team we

thought for sure we would beat, we lost to. (Overconfidence) But we'll get

them next time. I have a great set of girls on this team and they are working

well together. Its a real pleasure to be a part of.

My kdis have been sick, and you know what that means, I am now sick too.

Can't shake this bug. Hopefully, I am starting the road to recovery from this

one though. I can't take much more.

My youngest had been sick for a week, then my oldest got sick for the 2nd

time, took her to urgent care and she has a throat infection. poor thing is

miserable. I can't sit with her because I can't run the risk of catching it,

although I think I may have. So I bought masks and stuff to be around her for

short periods of time.

Its all a part of parenting I guess.

Hope all is well.

D

[Guest guest]

Hello Everyone!!

First I must start off by saying that I too am a bit worried about most of you. I have not seen this group so quiet. I'm new here I know, but up till recently everyone was quite "chatty". I hope and pray everyone is doing ok.

I got some more news on my Mother today. I'm not too sure if I like the results or not, if that makes sense. I'm glad they think it is something other than the IBM however not too sure I like the reason for her sudden weakness. This diagnosis is not confirmed as of yet, she had an MRI and an EEG test and then one more I cant remember the name, they sent shocks to the muscles and put pins in the legs to test the "noise" the muscles make. Anyhow they think at this point she has on top of the IBM and Fibermyalga (not sure how to spell that one) she is also suffering from Multiple Sclerosis. If this is true they feel it is far advanced at this point. Which I don't know how to take.

As soon as I got off the phone with my Mother I of coarse started researching MS.

And a lot of things made sense I guess. It is an autoimmune (again my spelling is real impressive) disease. Witch of coarse is also IBM. I believe it attacks the nerves instead of the muscles. So she would have one thing attacking her muscles and another attacking her nerves. Does anyone else have something similar to this? I have no clue most of the time but it seems to me that if you have your cells and stuff (real technical term there) attacking the muscle that they too could attack the nerves? I don't know if I'm making any sense to any of you. My mind I think works differently than most sometimes. She has had most of the testing required for diagnosing MS however now it seems she needs a spinal tap. She is terrified of doing this. Other things the look and test for are your reflexes, muscle strength, muscle tone, and sensation to heat, touch pain and vibration. They also observe your gait, posture, coordination and balance. Along with Clarity, thinking judgment and memory.

My Mothers reflexes are almost none existing, she obviously has little muscle strength left now, and muscle tone. She is in quit abit of pain lately as well. She has terrible posture. The first time I gave her a shower I couldn't believe my eyes with her back. Her back goes down OK tell you get to about where your bra strap would go and then curves almost straight out and then down again. She does not have osteoporosis however I wonder about scoliosus. Once again, please excuse the spelling. This would be explained by MS. Her coordination has gone down hill quit rapidly and her balance is poor right now as well. Her walking on the sides of her feet does not help that at all. She seems clear headed and alert to me, memory is OK as far as I know. And judgment, how knows, I have never thought her judgment was the best hence her husband that she stays with even though he refuses to help her. But I think her judgment is OK.

When I was researching today I came across the treatment and medicine for MS and I was wondering what your opinion is on some of these as to maybe the chance of them helping with her IBM. I know there are a few nurses in the group and was hoping for your input. The first of coarse are some already given to some IBM patients and my Mother has already been asking to receive them. Apparently the IVIG Intravenous Immunoglobulin is helpful with MS and I believe are somewhat helpful with IBM. Her doctors at this point have refused to give it to my Mom due to cost and effectiveness on her advanced IBM. I am hoping now they will think twice and try it on her. I am not the one paying for this expensive test but I just think that if there is even a remote possibility of it helping her I sure wish they would give it to them. The other is plasma exchange. I don't know if this would help her IBM. Then they mentioned the muscle relaxant Zanaflex. It stops muscle spasms and the pain in the legs. Another one is Corticosteroids which reduces the inflammation in nerve tissue and shorten the flare ups of the MS, wouldn't that be helpful with patience with myositis that have inflamed muscle tissue? And the last one I was wondering was Glatiramer Acetate that blocks the attacks in your immune systems. Sounds a lot like it too would be helpful with IBM. Anyhow I don't know a thing about this stuff but the treatment seems to sound like they could help with patience with myositis. Whats your opinion on these.

They last thing I was wondering is if it is MS will she get much better. I know there is no cure for MS but it can be "managed" and I am hopeful she can maybe gain some strength in her muscles back. Is this possible? She has gotten so bad, yesterday when she was having the test done she started crying from the pain and a nurse handed her a few tissues to wipe her tears and while she was lying down she was unable to get her hand to her face to wipe them. I haven't seen her in at least a week now due to my car is acting up but when talking to her Physical therapist this morning she is worse then ever and seems to be getting worse by the day. If anyone has any info on MS I sure would appreciate your input.

I am sorry this is so long once again, I seem to get more frustrated by the day and have no one to "vent" to except my Mom and I don't want to upset her. I have to remain the positive one for her. I need to cut this message short.....LOL...my kids school is in lockdown due to those fugitives from Texas are somewhere in the vicinity they believe, scary huh?

I need to go pick up the kids. Thanks for listening to me.

Sandy

[Guest guest]

,

Yes, I still have the twinkle in both of my eyes! Even, the gal that

delivers my meals on wheels, last Friday--she noticed also. I wished I felt

as good as my friends say I look!!!!Anyway, I guess, you are never too old to

need someone to Love you--Yeah!!He is coming to visit, me Feb.2nd. and I'm

counting the days now--won't be long!!!

Love,

Ev.

[Guest guest]

> ,

> Yes, I still have the twinkle in both of my eyes! Even, the gal

that

> delivers my meals on wheels, last Friday--she noticed also.

Hi Ev!!!! Now, do you think you two will need a chaperone???? I'm

available At least this all helps take away thinking of our poor

old bodies for a while, does'nt it, and those GOOD brain chemicals

stirred up by romantic and happy feelings can be healing!!!! Love

[Guest guest]

,

I am glad that they found the cause of some of your problems.

I am so excited about exams. Brad has done very well this semester with a GPA of 3.65, the best he has ever had. Of course due to lower grades before now, it is lower when averaged with previous years. had his first exams this week and got a 92 on his English, 92 on math, and an A in Tech Ed (he hasn't gotten the exact number grade because the teacher hasn't graded the extra credit part yet, but he already knows that he didn't miss any questions). I am so proud of him after all the trouble he was having at the beginning of the year. Now we just have to wait and see if he got a high enough grade in Social Studies to pass. That was the one class that he was still struggling with.

I am doing okay, but still struggling. I am down to 5mg of prednisone. My breathing is okay, but not as good as it was. My muscles are definitely weaker than they were a few weeks ago. I just have no energy and all I want to do is sleep.

I am sorry for not updating you all sooner, but we had another go round of computer problems. Our monitor went bad and then we had trouble getting the new one installed properly. It is always something!!!

Gentle hugs,

Fern

[Guest guest]

,

I hpe you are right, about feeling better--so far, its a wonderful feeling,

to know a special someone, Loves you!!!You are always, so upbeat!!!I'm sure

you would be a good conver sational-list. My spelling went out the

window!!!!!

Love you .

Ev.

[Guest guest]

Hi ,

I liked the old format better, too.....not that we are we getting set in our ways? LOL

You mentioned that your internist recommended a neurosurgeon instead of a neurologist. .....my brother recently had surgery on his cervical spine (he had areas that were growing and causing swallowing and breathing problems....everything is lots better since the surgery)....anyway, his doctor/surgeon was a neurosurgeon, too. I'm not exactly sure just what neurologists do, anyway....besides look at your nerves. I don't know if they do surgery, either.

Sounds like things are finally starting to happen for you!.....even the ciggies, go !

take care,

Connie

[Guest guest]

Soooo, you started Zyban...well I'm so proud of you.....I know you can

do it. Maybe that's what I should use if it's going to deaden the taste

buds...lol

Yahoo bought out eGroups so they changed the looks of the board. I

don't like it.... it takes an act of congress to get into it.

Good for you kiddo. I'm so glad you were able to not only get a woman

but an appt. for that soon. If she's really that busy then your pretty

lucky. Is Albany pretty far from your home?

Take care,

Vicki

[Guest guest]

>

>

>

>

> Yup- Zyban. They said to set your quit date a week or 2 after you

begin taking the drug. tomorrow is day 4, and they are not tasting

too great so maybe i'll move that date up! Mouth feels kind of funny-

dry too, but that can be handled. I was very nervous to use this as I

read many neg comments and frankly some frightening ones concerning

Zyban, but so far so good. One thing that seems common is a racing

heart, insomnia- that awful feeling I hate. And more than a few folks

have had pretty severe allergic reactions to it, some after taking it

for a while. So--- will see how it goes!

Albany is about an hour, depending where in the city this office is

located. This place isnt a clinic I dont think- you think an appt. a

month from now is early? I am in no rush, especially if facing an EMG

which wouldn't surprise me in the least. In fact, I'll almost bet on

it. And YOU can bet I WILL try to get out of that one. I have to make

certain they are on our insurance provider's list of course, even

though the office gal said they take our insurance.

I did the nordic track very carefully and slowly with little tension

this evening- made myself stay on it for 20 minutes. Did NOT use the

arm thingys, so it's easier. Right after, my right foot had so many

sharp shooting pains- felt exactly like electrical shocks that

wouldnt stop. That's due to the discs pressing on my sciatic nerve.

Then i felt all weak and my legs were shaking. BUT- I am NOT going to

quit!! Connie, interesting about your brother. Neurologists are

specialists who deal with MS, brain and nervous disease/disorders,

neuromuscular, myopathies, etc. Neurosurgeons are highly trained

(and I hope skilled!) and operate on the brain and spinal cord. And I

assume well versed in neurology too! S.