Re: [TMIC]An Article From www.aarp.org re M. Graves

[cherpent]

Thank you Hildred. What a great man - he has accomplished much in his life. He is definitely an inspiration to all of us.

Linda

-- Original message -- From: [EMAIL PROTECTED]  Hildred thought you might be interested in this page on AARP's Web site:   --- Message from Hildred    Do yall remember this guy from a few years ago? He got TM while in Germany and  was sent to the same rehab facility Chris Reeves had been in. I wondered what  had happened to him!   -   Please click the address below, or copy and paste the URL into your Web browser:   http://www.aarp.org/learntech/lifelong/the_unstoppable_genius_of_michael_graves.  html-  AARP's Web site provides the tools, information, and opportunities to help yo!
 u &
gt; get the most out of life. Discover the latest AARP member benefits, discounts  and special offers – including savings on online services.  http://www.aarp.org/  

Re: [TMIC] Re: tmic-digest Digest V2006 #9

[cherpent]

Harold, 
Grace and I have emailed each other for a long time. Suddenly last week my email to her came back to me. I don't know if she has moved - she talked about moving in with a friend in another state - but she hasn't told anyone. The last email I had from her about 10 days ago, she was doing much better after her hospital stay.
Hope we hear from her soon.
Linda (Bothell, WA)

-- Original message -- From: "harold" [EMAIL PROTECTED]  Has anyone heard from Grace, a TM Patient, the last I heard she was going  back into the Hospital. I sure would like to hear something from her we  became good friends through emails. If anyone knows anything please let me  know. thanks Hp   - Original Message -  From: <[EMAIL PROTECTED]> To: <[EMAIL PROTECTED]> Sent: Monday, April 24, 2006 9:56 AM  Subject: tmic-digest Digest V2006 #9   

Re: [TMIC] osteoporosis

[cherpent]

Hi Roger,

Good to hear from you. First of all I notice you are from Kennewick WA. I live in Bothell and worked at Plaza Ins for 31 years. Did you have your insurance with Plaza and do you know Tom Allen?? Small world if you do.

I actually had seizures prior to TM. I also have SjogrensSyndrome (an autoimmune disease I have been treated for since 1988) The seizures continued 3 years into TM. The doctors always related the seizures to the autoimmune disease. I finally had the ambulatory 24-hour test (fun) and it showed that I had a lot of seizure activity during the 24 hours. Therefore I was put on Lamictal, which can be a very dangerous drug, but I was put on it very slowly. I have tolerated it well. And have not had any more seizures since the beginning of the med. Thank goodness. The doctors really don't know for sure - but I had never had a seizure until I had the first autoimmune disease (Sjorgrens). No answers, really. I have learned, unfortunately, that if you have more than 2 seizures you are labled as having epilepsy. Epilepsy only means several seizures during a short period of time. Not one or two over a period of years. My doctors don't know any more than!
  yours! Nice huh. Please write back - I'd like to know if you are the same person we had insured all those years at Plaza Ins.

The best to you with your health
Linda (Cherpeski) Bothell, WA
P.S. How long have you had TM and where are your lesions?

-- Original message -- From: "ROGER C PRATT" [EMAIL PROTECTED] 



Hi Linda, I don't post often, but read all the posts everyday. I don't know how osteoporosis is for men, but I do know about seizures. I had seizures for two years before my TM diagnosis (none since). I was put on a number of medications (Febatol, Tegretol, Dilantin, Depakote) which I had allergic reactions to(rashes) when I tried to get to therapeutic dosages. I was finally put on primidone, and that was discontinued when I was diagnosed with TM. I have often wondered if the seizures were early signs of TM since I only passed out on my first seizure and only had jerking seizures from then on. Once I got steroids by IV for 3 days, the seizures stopped. I've had muscle spasms off and on, but no seizures. My doctors don't know (at least can't explain) what the relationship was between the seizures and TM. Interesting question. Do your doctors have any explanations.

All my best, Roger - Kennewick, WA


- Original Message - 
From: [EMAIL PROTECTED] 
To: [EMAIL PROTECTED] 
Cc: TMIC-list@eskimo.com 
Sent: Monday, April 03, 2006 9:29 PM
Subject: Re: [TMIC] osteoporosis

Well Patti, your post certainly made me think twice. I don't have an answer to your question, but I do know research has come a long way in treating osteoporosis. Do you know our ages, when TM came to live with us and menopause are the same?
I have not had a bone density test and I was having seizures for 2 years prior to being put on seizure medicine (Lamictal) and had no idea that osteo could be caused by anti seizure meds. I have to say now I am a little concerned. I have 2 doctor appts coming up - I will have to ask, I guess to relieve my mind - or give me something else to worry about : - )

Please let us know what the doctor says.

Linda - Bothell, WA

-- Original message -- From: [EMAIL PROTECTED]  I had a bone density test two weeks ago and now have an appointment with an  endocrinologist because of additional bone loss. I've done some research and  read on WebMD of the possibility that osteo can be caused by anti seizure meds.  I haven't found any info on Neurontin/gabapenten regarding osteo.  I have been taking osteo meds since age 48 when a bone density test came back  abnormal. A tests at 50 showed no additional loss and at 52 I had improvement.  TM and menopause happened simultaneously at age 53, my density test at 54 showed  no change. Now, at age 56 the numbers are dropping.  I know menopause can be the culprit, but do any of you know anything about anti  seizure meds and bone loss? What can the endocrinol!
 ! ogist help with (besides  telling me to stop caffeine)?   Patti - Michigan  

Re: [TMIC] More Balance Info

[cherpent]

Thanks Patti - I appreciate that. Yes I am still here and read the posts every night.
Linda - Bothell, WA

-- Original message -- From: [EMAIL PROTECTED]  Hi  I've waited patiently for you to add a comment or two. I was hoping you were  still in the background.  Patti - Michigan   [EMAIL PROTECTED] wrote:   Cora, I totally agree with what Dr. Kerr said. If I close my eyes, I fall over also.  And I always use my cane when I am not inside of my own house. Linda (Bothell, WA) -- Original message --   From: [EMAIL PROTECTED] On Balance: when I went to Dr. Kerr, he said I am compensating for lackof that "neurological noise" by using vision. And it's true. If I closemy eyes, I!
  would fall over!That's why I use my cane a lot, especially when I am out on unfamiliar turf.   Cora

Re: [TMIC] April Birthdays

[cherpent]

Yes! Happy Birthday to all of you having Birthdays in April!! Wishing you good health as well.

Linda (Bothell, WA)

-- Original message -- From: Crystal [EMAIL PROTECTED] 
HAPPY BIRTHDAY TO ALL OF YOU HAVING A BIRTHDAY IN APRIL!!! 

Always A Friend,
Crystal
[EMAIL PROTECTED] wrote:
Happy Birthday:KenKrisDiannaToddSheliaand anyone else lurking out there with an April Birthday!Cora




My MS  TMWebSite 

www.crystalangel.org




Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. 

Re: [TMIC] Shots and cramps

[cherpent]

Well Alton, I truly apologize. Obviously I do not know how to use this list. I thought all of those posts had been sent to everyone on the list. I am truly sorry. You don't need to leave the list because of me.
Linda

-- Original message -- From: Alton Ryder [EMAIL PROTECTED]  Please, good people, when your note is intended for one or two  people, send it directly to them, not to the list. It antagonizes  others and chokes up the archives.   Examples recently   Linda thanking Mary Eden   Linda thanking Krissy   Linda making idle conversation with Dex   What makes these senders think the rest of us give a hoot?   Alton, tempted to get off the list because of this spam  

Re: [TMIC] RE:OT STEELERS VS SEAHAWKS

[cherpent]

Jeff - NO WAY!!

Linda in Bothell, WASHINGTON - GO SEAHAWKS!

-- Original message -- From: jeff bernier [EMAIL PROTECTED] 
OK HERE IT IS,MY YEARLY PREDICTION,BY THE WAY LAST YEAR I WAS DEAD ON WITH THE SCORE.
PITTS 35
SEA 28
 JEFFDIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US.


Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail. 

Re: [TMIC] Shots and cramps

[cherpent]

Mary Eden
Finally somebody in my corner! Thank you. You know I have to root for my home team - this is the best they've done in years. I can remember about 15 years ago, you couldn't get a ticket to any of the games! Everybody had season tickets. Then the Seahawks went through many years of just plain being awful.
But this is going to be fun. Thanks again for your support - I might add, unlike some people, whom I shall not name, are not Seahawks fans : - )
Linda in Bothell, WA

-- Original message -- From: "Mary Eden Cochran" [EMAIL PROTECTED] 

Linda!
I have to go with the Seahawks tooonly because of you.
I don't know diddly squat about either team, but if you like
them, they have to be good.
m.e.

- Original Message - 
From: [EMAIL PROTECTED] 
To: jeff bernier 
Cc: TMIC-list@eskimo.com 
Sent: Saturday, February 04, 2006 12:54 AM
Subject: Re: [TMIC] Shots and cramps

Uh Jeff - I was born and raised in SEATTLE, WASHINGTON - yes in SEAHAWKS territory and I WILL have a good day when you tell me YOU have stocked up on kleenex
Oh what the heck - hugs to you anyway : - )
Linda
GO SEAHAWKS!!!
-- Original message -- From: jeff bernier [EMAIL PROTECTED] 
HELLO!!!
BE CAREFULL WITH THAT BACLOFEN,I TOOK IT FOR 5 YEARS AND IT CAUSED ALOT OFMUSCLE PROBLEMS AND INCREASED WEAKNESS IN MY LEGS AND I WOUND UP IN A WHEELCHAIR,AS FAR AS THE CRAMPS I GOT THE SAME SYMPTOMS BEFORE I GOT HIT WITH FULL BLOWN TM.
BY THE WAY THE COWBOYS RULE,I HOPE YOU SEAHAWK FANS STOCKED UP ON CLENEX LIKE YOU DID WHEN DALLAS LEFT TOWN AND LEFT YOU ALL SOBBING UNCONTROLLABLY,THATS WHY IT RAINS SO MUCH UP THERE.
NOW THAT I WOUND IT UP A BIT.HAVE A GOOD DAY.
nbs! p; JEFF
 CENRAL NY
 USA
PS:DONT STEP IN FRONT OF THE BUS.
 GO STEELERS!Mike  Jill Hammond [EMAIL PROTECTED] wrote:




Well, it has been a while since I have posted anything. I do lurk and read a lot of the postings. I have to weigh in on one subject and ask a question aboput something totally different.

First, while I did not have a flu shot before I came down with TM, I had just recently completed a Hepatitis B series. At that time the doctor told me that this may have also been a possibility. I am not sure what it was, but after a lot of reading about injecti! ons of different types, and especially the contents of a flu shot, I thought that I would rather get the flu than the flu shot. The one flu shot I did get several years before TM made me sick. 

My question concerns cramps. I have been reading some of the postings and still have questions. For some time now I have been having cramps in my feet, mostly at night.The cramps usually are in the ball of the feet. These cramps range from annoying, to feeling like someone dropped an anvil on my foot. At times, the only relief I get is by putting pressure in the opposite direction from the way the cramp seems to want to pull the feet muscles. Has anyone else experienced something like this, and if so, what have you done for it. I still havecramps in various locations in my body and when they get too bad for me I take baclofen for 3 to! 5 days and they subside. Sometimes I can go a month or more without taking baclofen and sometimes it may be several times in a month. Sometime back I posted a question asking if anyone used quinine water to help with cramps and I did not receiv!
 ! e any feedback. I feel that it does help a little. 

Mike in Marysville, Washingtonwhere it is wet, damp, rainy, soggy, mossy, and miserable. Othe than that, SEAHAWKS RULE!!!DIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US. 


Yahoo! Mail - Helps protect you from nasty viruses. 



No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.375 / Virus Database: 267.15.2/251 - Release Date: 2/4/2006

Re: [TMIC] RE:OT STEELERS VS SEAHAWKS

[cherpent]

Jeff, well not to be "mean" or anything, but if your wallet stings a bit tomorrow you could hear a snicker clear from Seattle : - )
Linda - WASHINGTON

-- Original message -- From: jeff bernier [EMAIL PROTECTED] MY WALLET IS TELLING ME SO,OR IM HOPING IT IS,IF NOT IM IN TROUBLE."[EMAIL PROTECTED]" [EMAIL PROTECTED] wrote: 
 PITTS 35 SEA 28 JEFFHOW DO YOU KNOW ???pHDIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US.


Yahoo! Mail - Helps protect you from nasty viruses. 

Re: [TMIC] RE:OT STEELERS VS SEAHAWKS

[cherpent]

Oh Frank - you are absolutely naughty - but a character non the less : - )

Linda - WASHINGTON

-- Original message -- From: "[EMAIL PROTECTED]" [EMAIL PROTECTED]   MY WALLET IS TELLING ME SO,OR IM HOPING IT IS,IF NOT IM IN TROUBLE.   OH,   MY wallet is empty.   I was told many years ago that half my brain was above my neck and half was in  my boxer shorts- and the boxers weren't even mine. they belonged to her.   pH  

RE: [TMIC] February Birthdays

[cherpent]

Well Deb - congratulations are in order
#1 HAPPY 50th - it's a good one!
#2 Big Congratulations on the upcoming Grandma - when is the baby due?
#3 Congratulations for being able to go in the toilet! : - )
Have a Great Birthday - 50 is a special one
Hugs
Linda in Bothell, WA

-- Original message -- From: "Deb Casey" [EMAIL PROTECTED] 



You can add me! Deb Casey, 2/11/56... it's the big 5-0 for me! and I'm going to be a grandma!My big wish for 50 was to go to Hawaii. Now my goal is to go in the toilet. Life sure is full of changes! --- On Wed 02/01, [EMAIL PROTECTED]  [EMAIL PROTECTED]  wrote:
From: [EMAIL PROTECTED] [mailto: [EMAIL PROTECTED]To: tmic-list@eskimo.comDate: Wed, 1 Feb 2006 08:02:29 ESTSubject: [TMIC] February Birthdays
Happy Birthday!!!(Please send any additions or corrections to tmic-list@eskimo.com.)2/2/63 Ursula ([EMAIL PROTECTED])2/2 Lisa in TN ([EMAIL PROTECTED])2/4/94 Isaac Sargent ([EMAIL PROTECTED]) (returned)2-5 Tita in Delaware ([EMAIL PROTECTED] ) 2-6-51 Barbara Alma ([EMAIL PROTECTED]) 2-7-82 Barbara in Texas ([EMAIL PROTECTED])2-9-41 Frank Trascritt ([EMAIL PROTECTED])2-10-55 Sue ([EMAIL PROTECTED]) 2/11/55 Mary ([EMAIL PROTECTED] )02/16/38 David T. Gibson ([EMAIL PROTECTED] )2/16/62 Diane Aja ([EMAIL PROTECTED])2-17-40 JOAN FINK ([EMAIL PROTECTED]2-20 Norma ([EMAIL PROTECTED])21/02/47 Phyllis Pollock ([EMAIL PROTECTED])2/23 Erin ([EMAIL PROTECTED])2/27/53 Cindy ([EMAIL PROTECTED])



No banners. No pop-ups. No kidding.Make My Way your home on the Web - http://www.myway.com 

Re: [TMIC] RE:OT STEELERS VS SEAHAWKS

[cherpent]

You got that right!!! : - )
Linda WASHINGTON
-- Original message -- From: jeff bernier [EMAIL PROTECTED] 
LOL!!!
YOU WILL NEVER LET ME FORGET IT IF IM WRONG.
 JEFF[EMAIL PROTECTED] wrote:

Jeff - NO WAY!!

Linda in Bothell, WASHINGTON - GO SEAHAWKS!

-- Original message -- From: jeff bernier [EMAIL PROTECTED] 
OK HERE IT IS,MY YEARLY PREDICTION,BY THE WAY LAST YEAR I WAS DEAD ON WITH THE SCORE.
PITTS 35
SEA 28
 JEFFDIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US. 


Brings words and photos together (easily) withPhotoMail - it's free and works with Yahoo! Mail. DIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US.


Yahoo! Mail - Helps protect you from nasty viruses. 

Re: [TMIC] Novelty

[cherpent]

Well Dex - I think that just about tops it! : - )

Linda in Bothell, WA

-- Original message -- From: "Dex Packard" [EMAIL PROTECTED] 





HOW ABOUT KITTY LITTER CAKE?

Re: [TMIC] Vision

[cherpent]

Oh Frank - what can I say - respectfully 
Linda : - )

-- Original message -- From: "[EMAIL PROTECTED]" [EMAIL PROTECTED]   none of us have all the answers to anything. And I certainly am one of  those!   Dear Linda, et al,   I would respectfully disagree.   I have all the answers to anything involving me.   Even if I don't have all the facts, I have the answers!!   Thanks for sharing...   pH 

Re: [TMIC] Vision

[cherpent]

Diane,
You are a naughty one- but I say You Go Girl!!
Linda

-- Original message -- From: Diane [EMAIL PROTECTED]  Had to giggle at this. When I think 'age', my tongue just won't stay in my  cheek. I stick it right out !!!  Diane in Canada   Heather  Pieter wrote:Besides TM we have so much to look forward to as we age - don't we??   (said with tongue in cheek) Heather in Calgary - Original Message -   From: "ROBERT COOK" <[EMAIL PROTECTED]>  To: "TMIC"   Sent: Friday, February 03, 2006 7:46 AM   Subject: Re: [TMIC] Vision  DARE I GO THERE? ME THINKS NOT.   

Re: [TMIC] Shots and cramps

[cherpent]

Uh Jeff - I was born and raised in SEATTLE, WASHINGTON - yes in SEAHAWKS territory and I WILL have a good day when you tell me YOU have stocked up on kleenex
Oh what the heck - hugs to you anyway : - )
Linda
GO SEAHAWKS!!!
-- Original message -- From: jeff bernier [EMAIL PROTECTED] 
HELLO!!!
BE CAREFULL WITH THAT BACLOFEN,I TOOK IT FOR 5 YEARS AND IT CAUSED ALOT OFMUSCLE PROBLEMS AND INCREASED WEAKNESS IN MY LEGS AND I WOUND UP IN A WHEELCHAIR,AS FAR AS THE CRAMPS I GOT THE SAME SYMPTOMS BEFORE I GOT HIT WITH FULL BLOWN TM.
BY THE WAY THE COWBOYS RULE,I HOPE YOU SEAHAWK FANS STOCKED UP ON CLENEX LIKE YOU DID WHEN DALLAS LEFT TOWN AND LEFT YOU ALL SOBBING UNCONTROLLABLY,THATS WHY IT RAINS SO MUCH UP THERE.
NOW THAT I WOUND IT UP A BIT.HAVE A GOOD DAY.
nbs! p; JEFF
 CENRAL NY
 USA
PS:DONT STEP IN FRONT OF THE BUS.
 GO STEELERS!Mike  Jill Hammond [EMAIL PROTECTED] wrote:




Well, it has been a while since I have posted anything. I do lurk and read a lot of the postings. I have to weigh in on one subject and ask a question aboput something totally different.

First, while I did not have a flu shot before I came down with TM, I had just recently completed a Hepatitis B series. At that time the doctor told me that this may have also been a possibility. I am not sure what it was, but after a lot of reading about injecti! ons of different types, and especially the contents of a flu shot, I thought that I would rather get the flu than the flu shot. The one flu shot I did get several years before TM made me sick. 

My question concerns cramps. I have been reading some of the postings and still have questions. For some time now I have been having cramps in my feet, mostly at night.The cramps usually are in the ball of the feet. These cramps range from annoying, to feeling like someone dropped an anvil on my foot. At times, the only relief I get is by putting pressure in the opposite direction from the way the cramp seems to want to pull the feet muscles. Has anyone else experienced something like this, and if so, what have you done for it. I still havecramps in various locations in my body and when they get too bad for me I take baclofen for 3 to! 5 days and they subside. Sometimes I can go a month or more without taking baclofen and sometimes it may be several times in a month. Sometime back I posted a question asking if anyone used quinine water to help with cramps and I did not receiv!
 e any feedback. I feel that it does help a little. 

Mike in Marysville, Washingtonwhere it is wet, damp, rainy, soggy, mossy, and miserable. Othe than that, SEAHAWKS RULE!!!DIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US.


Yahoo! Mail - Helps protect you from nasty viruses. 

RE: [TMIC] RE:FLU SHOT PLEASE READ

[cherpent]

Cindy,
I so agree with you - it has been years since I have had a flu shot and after reading all the information on the TM site, I will never have another one!
Hugs
Linda in Bothell, WA

-- Original message -- From: "Thomas L. Griffiths" [EMAIL PROTECTED]  Hi!   I was hit with TM May 01 (T5) and then another cervical attack that August.  I recovered pretty well and later was told there was no harm in getting a  flu shot. I had a wicked attack one month after the shot. My lesions are  extensive and rehabbing again was hard. So, no more flu shots for me ever  again!   Cindy in Kansas CityFrom: "C E" <[EMAIL PROTECTED]> To: [EMAIL PROTECTED], tmic-list@eskimo.com  Subject: RE: [TMIC] RE:FLU SHOT \ PLEASE READ  Date: Wed, 01 Feb 2006 21:18:55 -0600Hi Jeff and All,  This is everything I can remember:  I received a flu shot either Oct o!
 r Nov, 2004, and I had a Mantuoux (TB)  test in Feb 2005. I believe the TB test is given with a live virus, but  not positive. I work in a hospital which is why I received the TB test,  it's mandatory. Sometime between March and June I remember telling my  co-worker that I needed a new chair, because my butt was going numb and we  laughed about it. I remember commenting on it more than once, but always  brushed it off to needing to lose weight. I had a cold mid April 2005,  missed 1/2 day of work and layed around on the weeked. One afternoon Mid  June I layed down for a nap and 45 minutes later when I got up my right leg  was tingling as if it were asleep from my knee down to my toes. Within 30  minutes the tingling moved up my leg to my thigh. My duaghter, a nurse,  and I both thought I probably had a pinched nerve from beding over the bath  tub to bathe my granddaughter. The next morning I w!
 oke up a

nd had no use  of my right leg. I only knew it was there because of the pins and needles  feeling in it.Recap:  Flu shot - fall 2004  TB test - Feb 2005  cold - April 2005  TM - June 2005  Carol from Culver, T10   

Re: [TMIC] new member

[cherpent]

Hi Dennis,
Welcome aboard. Please feel free to tell us your story, ask any questions - and like Jeff said - we've all had one symptom or another. Hopefully we can help you with some questions you may have. Or at least offer support!
Hugs
Linda in Bothell, WA

-- Original message -- From: jeff bernier [EMAIL PROTECTED] 
HI DENNIS!!!
WELCOME TO THE LIST,IF YOUR LOOKING FOR ANSWERS YOUR IN THE RIGHT PLACE,EVERYONE ON HERE HAS JUST ABOUT EVERY SYMPTOM YOU CAN THINK OF.THIS IS A HUGE FAMILY AND WE ALL SUPPORT EACHOTHER,PLEASE TELL US SOME MORE ABOUT YOURSELF AND WHEN YOU WERE DX WITHTM\MS,PLEASE DONT BE AFRAID TO VENT YOUR FRUSTRATION ON HERE, WE ALL UNDERSTAND.JUST A QUICK WORD OF ADVICE FIND A GOOD DOCTOR THAT UNDERSTANDS THE DISEASE AND ITS PROCESS,MOST NEURO'S DONT HAVE A CLUE WHEN IT COMES TOTM.
 JEFF
 CENTRAL NY
 USAdennis rabalais [EMAIL PROTECTED] wrote:

I AM A NEW SUBSCRIBER. MY NAME IS DENNIS RABALAIS. I AM A C3-L5 QUAD. IS THERE ANY STUDIES FOR ME TO BE AWARE OF? THANKS.


What are the most popular cars? Find out at Yahoo! Autos 
DIPLOMACY DOES NOTWORK WHEN DEALING WITHNUT'S HELL BENT ONDESTROYING US.


Bring words and photos together (easily) withPhotoMail - it's free and works with your Yahoo! Mail. 

Re: [TMIC] Shots and cramps

[cherpent]

Hi Mike in Marysville, WA - this is Linda in rainy, soggy, mold and mildewing, need life jackets and a boat Bothell, WA-We are practicallyneighbors! 
I'm sorry I can't answer your questions regarding the cramping; however I have also heard that quinine water does help. 
And yes, other than that SEAHAWKS DO RULE
Hugs,
Linda in Bothell, WA

-- Original message -- From: "Mike  Jill Hammond" [EMAIL PROTECTED] 



Well, it has been a while since I have posted anything. I do lurk and read a lot of the postings. I have to weigh in on one subject and ask a question aboput something totally different.

First, while I did not have a flu shot before I came down with TM, I had just recently completed a Hepatitis B series. At that time the doctor told me that this may have also been a possibility. I am not sure what it was, but after a lot of reading about injections of different types, and especially the contents of a flu shot, I thought that I would rather get the flu than the flu shot. The one flu shot I did get several years before TM made me sick. 

My question concerns cramps. I have been reading some of the postings and still have questions. For some time now I have been having cramps in my feet, mostly at night.The cramps usually are in the ball of the feet. These cramps range from annoying, to feeling like someone dropped an anvil on my foot. At times, the only relief I get is by putting pressure in the opposite direction from the way the cramp seems to want to pull the feet muscles. Has anyone else experienced something like this, and if so, what have you done for it. I still havecramps in various locations in my body and when they get too bad for me I take baclofen for 3 to5 days and they subside. Sometimes I can go a month or more without taking baclofen and sometimes it may be several times in a month. Sometime back I posted a question asking if anyone used quinine water to help with cramps and I did not receive !
 any feedback. I feel that it does help a little. 

Mike in Marysville, Washingtonwhere it is wet, damp, rainy, soggy, mossy, and miserable. Othe than that, SEAHAWKS RULE!!!

Re: [TMIC] Osteonecrosis

[cherpent]

Hi Sandy,
I am so very sorry to hear about Terry. And boy I can certainly understand why your shoulders are not as big as they used to be. How much can one carry.
Please tell Terry that he is in our thoughts and prayers. I certainly hope the doctors have some good answers/solutions for this. It is so hard to see a loved one go through everything he has been through. And you're right, you just get to thinking you are taking many steps forward, and then boom - back you go. So true of many of us TMers.
Please stay in contact and let us know how he is doing.
Hugs
Linda in Bothell, WA
PS I did take steroids for 10 years - between the ages of about 37 to 47. But I went up each time I had a flare up of Sjogrens, then slowly weaned down to a maintenance dose. When I was on the high doses, I was practically euphoric the first week. Then all the joint pain came back after weaning down the 2nd week. I finally had had enough and just told my doctor to get me off of it.
-- Original message -- From: [EMAIL PROTECTED] 


Thought it was time for another update on Terry as he has had a bit of problems in the past year. Those of you may remember that he had surgery on both shoulders and it seems his bones are continuing to deteriorate thanks to the long term continued use of steroids. 

When TM hit him in March of 2000, his internist said the first thing they needed to address is the long term affects of steroids and how to get him off them. He was at 150 mg daily decreased to 7 mg daily for the past 1 1/2 years + or -. He "crashes" if he goes any lower. The pay off has come and unfortunately it may be at a big expense. He now has fairly severe OsteoNecrosis, (his bones are "dying" as no blood supplyis getting to them),in both shoulders, right ankle and left femur. He goes for yet another MRI and CT on Wednesday. After his Orthopedic reviews the reports, he is contacting aProfessorat the Mayo Clinic for his advice. In my research, 90% of people with ON have it in their hips, (not Terry), and less than 3% have it 2 or more places. TM, now ON, both rare.

You can't stop living your life but how much more can ones body take? You just try and try to be optimistic and hopeful, and then you're thrown back down into the corner. 

I know there are a few of you out there that have been on steroids for a long period of time and what are your side effects?

Sorry it’s so long…(I could go on and on, too). I felt a need to share this with you as I don't feel my shoulders are as big as they use to be

Sandy

Re: [TMIC] myoclonic jerks

[cherpent]

Patti,

I love it! What a sense of humor you have!
Hugs
Linda in still rainy Bothell, WA - soon we will need life jackets
and a boat

-- Original message -- From: [EMAIL PROTECTED]  Thanks for the info on clonus. Was I the only one who laughed when I read the  term "myoclonic jerks"? I don't think it is proper for a lady to call a person  a "jerk". However, TM ladies can now call a person myoclonic and still be  proper! Just another TM term that the rest of the world might not understand!  Now if I can just remember the word!!!   Patti - Michigan  Class of 2003   If this comes through three time, it isn't because I felt it was that important.  I keep hitting wrong buttons and can't find my message.  

Re: [TMIC] Is It TM or Not / forgot this

[cherpent]

Sally - thank you - right on! My doctors have told me they are striving for QUALITY of life for me and are doing everything in their power to accomplish this. My daughter, son-in-law and little 2 yr old granddaughter were here for 2 weeks over the holidays. They live just outside Wash DC (we live in Wash State!) In order for me to spend Quality time with them, I had to stick with my "health" routine and have my 2 - 3 hour nap everyday. They understand, so I didn't feel like I was missing out on things - I felt the time I did spend with them was Quality! And believe me, I have had to learn this the hard way over time.

I'm sorry I don't have an answer to your health issue. Have you contacted your doctor. If not, I think you definitely should! Remember - quality of life.
Hugs
Linda in rainy rainy and more rain Bothell, WA

-- Original message -- From: [EMAIL PROTECTED] 

Focused ValueQuality vs. Quantity 
We live in an age of quantity. The media shapes us with the notion that larger, faster, and more are often synonymous with better. We are told that we need to find more time, more possessions, and more love to be truly happy. A smaller quantity of anything that is high in quality will almost always be more satisfying. A single piece of our favorite chocolate or a thin spread of freshly made preserves can satisfy us more than a full bucket of a product that we aren't very fond of. Similarly, one fulfilling experience can eclipse many empty moments strung together. It is not the quantity of time that matters, but the quality that you experience during each moment. Every minute is an opportunity to love yourself and others, develop confidence and self-respect, and exhibit courage. Ultimately, quality can make life sweeter. When you focus on quality, all your life experiences can be meaningful. A modest portion of good, healthy food can nouris!
 h and satisfy you on multiple levels and, when organically grown, nourish the earth as well. Likewise, a few hours of deep, restful slumber will leave you feeling more refreshed than a night's worth of frequently interrupted sleep. A few minutes spent with a loved one catching up on the important details about family, work, or community can carry more meaning than two hours spent watching television together. Often, in the pursuit of quantity we cheat ourselves of quality. Then again, quantity also plays a significant role in our lives. Certain elements, such as hugs, kisses, abundance, and love, are best had in copious amounts that are high in quality. But faced with the choice between a single, heartfelt grin and a lifetime of empty smiles, most would, no doubt, choose the former. Ultimately, it is not how much you live or have or do but what you make of each moment that counts.
Hi All
This was suppose to show you one more thing I had to check on. I forgot to tell you another symptom of I didn't know of RP. I can only clear my throat 1/2 way down, this has been going on over 2 months. I asked on the RP group if anyone had this symptom andit is from RP. If I didn't ask this question I would never have known and get treatment for this. This has to be treated and if not it can be life threating. So seeking advice on something new is very important.
Sally

Re: [TMIC] Intravenous Methotrexate Rituximab.

[cherpent]

Hi Grace,
I was on intravenous Methotrexate for 3 yrs. I tolerated it fairly well, with an anti-nausea drug that cost $54.00 per pill (no kidding) but only had to take it once a week. My doctor changed things a bit though about 6 months ago - he put me in Imuran instead.
Hugs
Linda in Bothell, WA

-- Original message -- From: "Grace" [EMAIL PROTECTED] 



The neuro is considering intravenous Methotrexate or Rituximab to control my symptoms long term. Has anyone here had any experience with either drug? Any input would be greatly appreciated.

Grace

Re: [TMIC] Fw: Back from hospital.

[cherpent]

Hi again Grace,
I am sooo glad you took action right away with the eye issue. That is nothing to mess around with. Sorry you were in the hospital, but also glad you went right away to stave off further damage. 

Hugs and Blessings
Linda

-- Original message -- From: "Grace" [EMAIL PROTECTED] 




- Original Message - 
From: Grace 
To: tmic-list@eskimo.com 
Sent: Monday, January 30, 2006 3:35 PM
Subject: Back from hospital.

Ended up in the hospital with bilateral optic neuritis. Thankfully, I've responded to IV Solumedrol. I have to have several more intravenous treatments here at home. then it's back to 60 mgs of prednisone, and for now, 100mgs of CellCept. Although my eyes are not back to where they should be, they didn't get any worse. Oh well, at least it was like old home week back on the ward. It's getting pretty bad whenever you know all of the nurses and aids on a first name bassis.

Grace

Re: [TMIC] JUST TO GET CAUGHT UP

[cherpent]

Hi Jeff,
Welcome back to the TMIC list. My name is Linda and I have actually only been on the list since 2004, but was lurking in the background for a while before I introduced myself. This is a great place to meet and make new friends who completely understand what we go through - and also a place to have some fun.

Looking forward to hearing from you more often!
Linda in very rainy Bothell, WA

-- Original message -- From: jeff bernier [EMAIL PROTECTED] 
FIRST I WOULD LIKE TO SAY HI TO EVERYONE ON THE LIST,ITS BEEN A FEW YEARS SINCE IVE BEEN ON AND I DOUGHT MOST OF YOU DONT EVEN REMEMBER ME,BUT I SEE A FEW NAMES STILL ON HERE I REMEMBER.IVE BEEN TM'D SINCE FEB 2000,I WAS A PARAMEDIC\FIREFIGHTER SOWHO THE HELL KNOWS I COULD HAVE GOTTEN THIS FROM A PATIENT,I ALSO FELL THROUGH A FLOOR OF A BURNING BUILDING AND LANDED ON MY HEELS WITH 75 LBS OF GEAR ON ME AND THE SYMPTOMS STARTED AROUND THE SAME TIME,SO ITS ANYONES GUESS.IM IN A WHEELCHAIR AND HAVE PARTIAL FEELING FROM THE WAIST DOWN,BUT NO MUSCLE MOVEMENT OTHER THAN SPASTISITY,WHICH I HAVE A BACLOFEN PUMP FOR.IVE BEATEN DEPRESSION BACK FROM BEING AT THE BOTTOM OF THE BARREL AND THAT WAS WITH NO MEDS OR PSYCH HELP SO I DESCRIBE MYSELF AS A HARD MINDED SUN OF A GUN AND IM PROUD TO SAY I DID IT ON MY OWN.IM A GULF WAR 1 COMBAT VET AND A DIE HARD PATRIOT AND WOULD LOVE TO HEAR FROM ANYONE,THATS MY BORING STORY TO SUM IT UP IN A NUT SHELL.I!
 ! TS NICE TO BE BACK ON THE LIST AGAIN.JUST TO CATCH UP MY STORY FOR THOSE OF YOU WHO MAY NOT REMEMBER ME.SHOOT FIRST! ASKQUESTIONS LATER.


Yahoo! Autos. Looking for a sweet ride? Get pricing, reviews,  more on new and used cars. 

Re: [TMIC] Lyrica

[cherpent]

Hi Priscilla,

Welcome back - I hope you will regularly write and keep us informed on how you are doing. I'm glad you discovered Neurontin was the cause of the diarrhea - it's not a nice thing to have to dealwith that when you have TM! Lyrica is a great med. I also take Cymbalta - I like it as well.

Thank you for sharing your experiences with us. We are here to support each other - and I have learned a lot since I have been here - and also have made some great friends along the way!

Blessings 
Linda in Bothell, WA

-- Original message -- From: [EMAIL PROTECTED] 

I don't write often, but I read the posts every day. I am 63 and I have had TM since May of 2001. I can walk short distances like from my front door down the sidewalk to a car, and then my legs get weak, and I have to sit a while. I have very little use of my fingers, hands, and arms which makes it impossible to hold anything like a fork or book or newspaper, or batheor dress myself. 

You can imagine me trying to go to the bathroom. I have had chronic diarrhea over 4 years until last week. I asked my doctor to prescribe Lyrica instead of Neurontin. So far it is working great for me and no more diarrhea three times a day! What a blessing to be regular again and no more accidents. I wishmy doctor hadfound Neurontin was causing it long ago, instead of treating me for Crohn's Disease. Thanks to this website I have learned so much about TM and its treatment. I now take 75 mg. of Cymbalta once a day, 50 mg. of Lyrica 3 times a day, Oxytrol patches, and Proamatine for low bp twice a day. Next week I will increase the Lyrica to 75 mg. 

Lyrica is helping my mobility just a little more than Neurontin, but my legs feel colder. Its side effects for me are thirst and insomnia. 

Thank you, my friends, forsharing your experiences. I am feeling so much better.

Priscilla in TN



My prayers are with Tom Carr's family and friends. I do believe he has passed away.

Re: [TMIC] EARTHLINK NORTON

[cherpent]

Bobberino -
I agree - although I think cretins is "mild" compared to what I'm thinking : - ) I'm still having trouble as well, however, my computer says that my Norton Anti Virus is enabled! But I keep getting these big messages that say my coverage has expired.

I'm not spending any more time on it right now. I'll wait a little while and see if they get their "crap" together!

Thanks for the info

Linda in Bothell, WA

-- Original message -- From: "BobbyJim" [EMAIL PROTECTED] 



H . I see others as well are having problems with Norton. The latest that happened to me is that when I try to download upgrades, a dialog box pops up and tells me I have a beta version and it won't take updates !!!
Xxkyewww me.!!! I paid big bucks for my Noton CD and now they are giving me this 'stuff'..??? Am not renewing with them and switching to other vendors.

What cretins, Bobberino 

From: [EMAIL PROTECTED] To: [EMAIL PROTECTED]Sent: Tuesday, January 10, 2006 11:02 PM

Subject: Re: [TMIC] EARTHLINK  NORTON

Bob,
Thanks for the heads up. I don't have Earthlink, but I renewed my Norton Anti Virus Dec 24 (renewal date 1/7/06), received a confirmation and am still being told I did not renew. I've done everything under the sun. I get a message (or 10) from them everyday - "you have not renewed" etc

Are you having the same problem.
Linda in Bothell, WA

-- Original message -- From: "ROBERT COOK" [EMAIL PROTECTED] 


FOR THOSE OF YOU THAT HAVE EARTHLINK.NET FOR YOUR ISP AND USE NORTON ANTI-VIRUS, YOU MIGHT BE UNABLE TO RECEIVE YOUR E-MAIL USING THE TOTAL ACCESS MAIL BOX. YOU CAN ACCESS YOUR E-MAIL THRU YOUR WEB MAIL, THOUGH.

A RECENT UPDATE OF YOUR NORTON REINFORCES YOUR FIREWALL PROTECTION AND YOUR TOTAL ACCESS MAIL BOX MAY NOT WORK BECAUSE OF THE FIREWALL.

AS ANOTHER SOLUTION, USE YOUR WINDOWS FOREWALL FOR PROTECTION AND DISABLE YOUR NORTON FIRE WALL PROTECTION, AND YOUR TOTAL ACCESS MAIL BOX WILL WORK. I THINK NORTON IS WORKING ON THIS PROBLEM

BOB, WHO STARTED HAVING THIS PROBLEM AFTER I UPDATED MY NORTON YESTERDAY.

Re: [TMIC] Re: lyrica

[cherpent]

Hi Marie,
My name is Linda and I was on Lyrica for a month. My doctor gave me a month supply to try. I slowly titered up on it, and I could not believe the difference. Almost all of my burning, pain, tingling, freezing, hot pain all at one time - it was all gone. When the doctor wrote the prescription for me, my insurance company would not pay for it (Regence Blue Shield)

So I have been off of it for about 3 months now, and I can tell you I have all of the above back again. Burning etc that is almost unbearable, even though I take neurontin - it just barely takes the edge off. I did NOT have any side effects taking the Lyrica. It was great! I hope you try it - start slowly so your body has a chance to adjust to it. Then your doctor will wean you off the neurontin. Good luck - let us know how you do.

Linda in Bothell, WA

-- Original message -- From: [EMAIL PROTECTED] 


In a message dated 1/11/2006 8:59:59 AM Central Standard Time, Dee RERE writes:

HI JUDE,

MY NAME IS MARIE I HAVE HAD TM FOR 7 YEARS I HAVE FROM C7. HAVE BEEN ON 
NEUROTIN 600MI 3 TIMES A DAY AND CYMBALTA 2 TIMES A DAY. I WOULD LIKE TO TRY LYRICA. PLEASE TELL ME ABOUT THE SIDE AFFECT. I HAVE ALOT OF PAIN IN MY HANDS AND ARMS. I HAVE NO FEELINGS IN MY LEGS. I READ MANY OF YOUR LETTER TRHEY HELP ME TO KNOW I AM NOT ALONE.

MARIE FROM CT.

Hi Marie,

How nice to hear from you, although not under these circumstances. You have had Tm lots longer than I have. I ought to be asking questions of you instead of the other way around. I know so little.

I'm sorry that at this time I cannot answer your questions regarding Lyrica. I was just beginning the protocol for getting off of Neurontin and onto Lyrica when I broke both of my legs. Because of all of the additional medications I am on to help the pain in my legs and to try to build them up with calcium and vitamins, my doctor decided it would be too much to try to get on Lyrica at this time. I will try it again once the casts are off my legs and I can get around a little bit better. I have enough to deal with right now.

I haven't even done any research into Lyrica although I believe it is Linda who is taking it and having good luck. 

I can't wait to try Lyrica. I am in quite a lot of pain all of the time, like so many of us, and have heard such good things about it. Someone reported that their pain was completely gone. I hope that we are all so lucky!

Thanks for sharing email, Marie. It's nice to hear from new people. I hate the reason that we with TM have gotten to know one another, but I do enjoy making new friends. 

Please keep in touch with me and the rest of the "List". Good luck with Lyrica...let me know how you do.

Peace,
Jude

Re: [TMIC] mechanisms of pain

[cherpent]

Hi Jude,

You are welcome. I'm glad your insurance company is paying for the Lyrica. I don't know who started the conversation, but I do remember many months ago several people mentioned a new drug was coming out in Aug 2005 that was suppose to replace neurontin and be better. Shortly after that is when my doctor gave me a month supply of Lyrica - and I did write in about the great benefits I had from it.

I'm sure many more are also taking Lyrica. Anybody out there??

Take care Jude - hope you feel better soon!
hugs
Linda in Bothell, WA

-- Original message -- From: [EMAIL PROTECTED] 


In a message dated 1/7/2006 9:54:26 PM Central Standard Time, [EMAIL PROTECTED] writes:

Hi Jude,

That was me (Linda) talking about the miracles of Lyrica. My neuro gave me a one month supply, started me slowly until I reached the maximum dose (2 pills a day total 100mg), I had NO side effects and almost NO pain at all! I could not believe it. I had some of my life back! He had weaned me down to almost no neurontin by then. He then gave me a prescription for Lyrica but my insurance company would not cover it. The doctor appealed 3 times - still the answer was NO. It is an absolutely great drug and you do not have to take neurontin once you reach the max dose of Lyrica.
I am going to do what Sally suggested. Call the company who makes Lyrica and explain to them what has happened and plead my case for all TMers. Maybe they will feel generous and give us a good deal on the cost or even give us some for free! That's even better.
I was up half the night last night first with legs and feet that were so cold I simply could not get them warm. Then I woke up after a whole 2 hours of sleep with legs and feet that were on fire. They still are...so very painfulI feel like screaming : - )
Hope that answers your questions. I will let everyone know what I find out from the makers of Lyrica.
Love to all
Linda in rainy, windy Bothell, WA

-- Original message -- From: [EMAIL PROTECTED] 


In a message dated 1/7/2006 6:31:09 AM Central Standard Time, [EMAIL PROTECTED] writes:

Sally, you are also very fortunate not to have pain. I can't even imagine. I have had pain since 1988, starting with the joint pain, and then TM hit 4 years ago. The first year was the "best" (if there could possibly be one!) because I didn't have any feeling from my chest down. Then after about a year, wowser - exploding neuropathic pain. I did get a month supply of Lyrica a few months ago from my doctor - I could not believe the difference. Almost NO pain. Oh - and I had no side effects, lucky me. However my insurance company won't cover it! So I'm back to neurontin which quite frankly only just barely takes the edge off.

And I agree, I continue to pray for those in pain and for those with other related symptoms that go along with TM.

Love you all
Linda in Bothell, WA - yep, still raining!

-- Original message -- From: [EMAIL PROTECTED] 


I am with Alton as far as the pain goes, I have never had any of that with TM. I do feel so sorry for the ones that have the pain you can't get under control. I have had pain in 79 and nothing took it away. It went on for several weeks in the beginning and then 4 weeks at a time off and on during 5 mos or so. I pray all the time for those of you in pain, even those that don't and yet have other types of not really pain but so so.
Hope you take care and have a better day today.
Love ya all
Sally
NC

Hi,

I am not sure if I am replying to Linda or Sally, so please forgive me. I seem to be missing a lot of emails and only a few come through giving me only a portion of the communication going on between TM members.

My doctor just gave me a script for Lyrica. Linda, are you the one who is now taking it? Can you give me a bit more feedback about it? Are you having more side effects and is it still working so well on the pain?? 

My pain level is way up these days, with two broken legs to tend with as well as the neuropathic pain from TM. My doc told me to back off of the Neurontin while on the Lyrica. Did you notice any effects from not taking the Neurontin any longer? I've been on it so long now, I am afraid to be without it.

Please get back with me as soon as you have the time. I really need help with my pain and probably ought to start the Lyrica.

Thank you so much,
Peace and Love,
Jude

Hi Linda,

Thanks for getting back to me so promptly. I'm glad that you found the Lyrica worked so well for you, but am saddened that the insurance company will not pay for it. 

My insurance Co. paid for at least the first prescription so guess that means it will continue to pay for the long run. I only have to build up on it and taper off of the neurontin in order to see whether or not it will work for me.

I must have been in the hospital or nursing home while the discussions for Lyrica were taking place on the list. What started all of the hullabaloo about 

Re: [TMIC] mechanisms of pain

[cherpent]

Diane - oh I feel so bad for you. The cold between the shoulders - When you get that cold, is it even possible to get warm or even close to warm again?? You will be in my thoughts. Feel better

Linda in Bothell, WA

Frank - now you are a completely different story. I cannot even begin to imagine what you must go through - and again - I feel I must apologize for complaining about just my legs and feet when you and so many more TMers suffer so. (I hang my head)

You will be in my thoughts also!

Hugs to you - and here's to ALL of us feeling better in 2006!

Linda

-- Original message -- From: Diane [EMAIL PROTECTED]  Funny that the subject of hot/cold comes up now. I've been having a flare this  past week and the cold is driving me crazy. The worst for me is in my back - I  call it my patch. It feels like someone is holding a bag of ice between  my shoulder blades and I'm so cold, I shake. Like some of you, it wakes me up  several times during the night .and I have to cath. Very thankful for the  Remeron that helps me get back to sleep. Crazy TM.  Diane in Canada (who's even colder than outside)   "[EMAIL PROTECTED]" wrote:I have the same thing, but I have it in my arms, hands and trunk too. My left  hand is the worst going back and forth from very cold to very hot. my skin  actually gets!
  cold and hot.   

Re: [TMIC] ladies I need help

[cherpent]

There's our naughty Frank. I have been wondering where you've been hiding. (You needn't tell us - let us use our imaginations)

Actually I think removing the eyeball sounds like a very good solution. I will give it a try myself.

Glad to have you back - have missed your humor!

Hugs
Linda in Bothell, WA

-- Original message -- From: "[EMAIL PROTECTED]" [EMAIL PROTECTED]  Krissy,   I have the same problem from time to time.   I just take my eyeballs out and soak them in a dilute baking soda solution  overnight.   Works like a charm.   If you've never done this you should learn the proper technique for the removal  and reinsertion.   Good Luck   pH  

Re: [TMIC] Thank You All...I am much Blessed.

[cherpent]

Hi Jude,

Oh my, you having been going through a rough time. I hope and pray for you that this will heal quickly and you will be back to your old self again - hey - or even better! Wouldn't that be nice!

Hugs and Blessings

Linda in Bothell, WA


-- Original message -- From: [EMAIL PROTECTED] 

It would be much nicer and more appropriate for me to answer all of the lovely emails sent by my concerned TM family one by one, but the fact is that I am too tired to type that many responses and so am hoping that this one "thank you" will be adequate.

Home nursing was just here and set me up for physical, mental and spiritual help. I don't know why I am having such a difficult time getting through this...it just seems like adding insult to injury. But, we have all been there at some point in our lives.

Dave and I did no shopping for Christmas gifts, so this year seemed spare on our part, but actually a bit nicer in a way. The children have been lovely and grateful to have me home once again and didn't care a whit about not getting presents from us.

We were Blessed with lovely friends who came on Christmas Eve to sing Christmas carols with us. They brought a small decorated tree and gifts for Dave and Me. Then, Dave went to their home for dinner Christmas Day and brought home copious amounts of wonderfully prepared food. Lots of "comfort" food for me, in the form of stuffing, mashed potatoes  gravy, cornbread and pie. They did include turkey and other healthful foods, but who cares???

Thank you to those of you who sent kind regards and get well messages. It means a lot to me to know that you are thinking of me. When cursed with a disease such as TM and associated accompanying diseases, it is good to have friends who understand not only the broad picture of ill health, but the minutiae of details too.

Peace,
Jude

Re: [TMIC] Surprise

[cherpent]

Well thanks Dex - we needed to hear that! I always think when the Christmas season is past, spring is not far away - and that is a great joy - new birth, new life - flowers!

Linda in Bothell, WA

-- Original message -- From: "Dex Packard" [EMAIL PROTECTED] 



Guess what



Only 365 more days until christmas 2006!!

Isn't that wonderful news?


And on top of that you should have this Christmas days bills all paid by May. Or so I read somewhere. I think who ever came up with that bit was out of has mind. It will take me until June at least.

Happy New Year to you all.

Dex

Re: [TMIC] Happy Holidays!

[cherpent]

Krissy - thank you. I loved these and forwarded to many people!
MERRY CHRISTMAS TO YOU AND TO ALL OF OUR TM FAMILY AND THEIR CAREGIVERS.

Linda in Bothell, WA

-- Original message -- From: "Krissy" [EMAIL PROTECTED] 











*Krissy/Lady K has sent you a Care2 e-card!To view your card, simply click on this address:http://www.care2.com/ecards/p/7349-7492-18273-5901 

Re: [TMIC] OT: Back from TX

[cherpent]

Barbara,

Welcome home. Glad you are safe and sound. I know this will be a difficult time for you - and yes, you will be teary-eyed and that's ok! Your comfort is in knowing that you will meet again some day - there will be no pain, no sickness - only beauty.

Blessings to you and your family

Linda in Bothell, WA
-- Original message -- From: [EMAIL PROTECTED] 

Just wanted to thank you all for your prayers and warm wishes in the event of my mom's passing and our whirlwind trip to TX and back. Everything went well, and we had a good time visiting with family and friends. Even got to visit with RCookHook for a few minutes - he was a dear to come out, and on one of Houston's record rainy days (5 1/2 inches in one day!)

It will take a while to adjust to my mom's absence. Some days it doesn't seem real; other times I'm teary over not being able to see her or talk to her again til we get to heaven. She was one of my best friends, and I'll miss her.

We got back a few days ago, then had a flurry of laundry and housecleaning for my husband's mom to come for a visit that we had already planned before all of this other happened.

But I just wanted to let you know we were back and safe, and thank you for you prayers and thoughts.

Barbara H.

Re: [TMIC] Hi Everyone

[cherpent]

Hi Everyone,

Yep, I am exactly the same way. Bite off more than I can chew. Before TM I did everything - very active - this fatigue has to be one of the hardest parts of TM for me. My mind tells me "yes - go for it" my body has ideas of its own. Therefore, I have half-done things all the time - and let me tell you, I'm one of those people who could never tolerate that before!! Life does change that's for sure. Naps are the only thing that keep me half-way sane.

Blessings to all
Linda in Bothell, WA

-- Original message -- From: "Lynn Pouliot" [EMAIL PROTECTED] 



Hi Everyone,

I too get up feeling like I can do anything. I always start some sort of project ( cleaning house, clearing out a closet, decorating) and soon realize I "bit off more than I can chew" I tire so easily. Hence, I always have half of things completed. And a bigger mess than I sarted with. Oh well, I am starting to learn how much I can do before I get tired. Resting usually restores most of my energy, but not all.

Lynn P. in Frigid RI

- Original Message - 
From: Heather  Pieter 
To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; tmic-list@eskimo.com 
Sent: Tuesday, December 13, 2005 1:08 PM
Subject: Re: [TMIC] Hi Everyone

Hi there,
I have not met Harriet but want to thank her for her ideas and upbeat feelings as well. She hit the nail on the head when she said that we can tend to feel our body image failing with clunky shoes, heavy limbs and in my case as one of the walking wounded - feeling like an invalid (when I'm not really - in my mind anyway). I hope to get my driver licence back soon when I am approved by the Driver Fitness and Monitoring people to use a left foot accelorator. Then I am hoping to go and try some water therapy at a lovely warm water swimming pool here in Calgary. I gave up the exercise classes a while back. Just got tired of the trek there and back in the Handibus etc. 

janh,
You mention overdoing things at this time of year. This is my 3rd Christmas now with TM. I was hit by it Sept 2003. This year we do not have friends living with us to help decorate (as we did in 2003), and we don't have my husband's daughter and granddaughter living with us to help out (as we did in 2004). So overdoing it in the 'getting ready for the season' is not hard. I am finding that when I first get up in the morning after a good nights rest I think that I can do 'anything' and do it quickly. Of course once I start doing things I quickly become more tired (in my body from waist down where I am affected from T8 - T10) and my limbs become s heavy that I have to take frequent rests. I am going to write a note in my 2006 calendar to start preparing for the season a whole lot earlier (like at the beginning of November) next year. 

Sorry to write so long a 'note'. I am just musing this morning but should get in gear as my hubby and I have a little more Christmas shopping to do today and decorate the tree that has been standing in the living-room 'bare' since Saturday. It is one of the fake trees with the lights already attached but looks kind of sad with no ornaments or garland. 

Bye now,
Heather in Calgary 

- Original Message - 
From: [EMAIL PROTECTED] 
To: [EMAIL PROTECTED] ; tmic-list@eskimo.com 
Sent: Tuesday, December 13, 2005 8:32 AM
Subject: Re: [TMIC] Hi Everyone
Harriet,It's so good to hear from you.and everything your shared was a positiveand an idea for some of us to pursue.It's great to hear you so upbeat!!Thanks for writing and keep us updated..this time of the year we need positive strokes as we're all so busy, and we can get down! so easily when we overdo.janh Stiolwater OK 



No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.371 / Virus Database: 267.13.13/199 - Release Date: 12/13/2005

Re: [TMIC] Fw: Prednisone/Neuro/Devic's

[cherpent]

Alton,

God Bless you. I have written Grace personally - I want to thank you for being so direct and right to-the-point! You're great.

Linda in Bothell, WA

-- Original message -- From: Alton Ryder [EMAIL PROTECTED]  Grace, call your doctor pronto. You need an anti-depression treatment right  away - a drug like Zoloft, or a session with clergy or professional.   You are looking at the empty portion of your glass, not the full portion.   If I remember correctly, your relationship with your daughter is so much  better than what is normally the case.   The prednisone reduction can be as short as a week or two during which the  thrush can be squelched. People like myself on inhaled corticosteroids get  thrush quickly if we fail to rinse thoroughly after treatments. Talk to your  GP about the source of the thrush infections. It may be that you need  anti-bacterial rinses (Listerine or better) or anti-f!
 ungal rinses (e.g.,  Swish-n-swallow, an Rx nystatin suspension) a few times a day.   As for the people who notice impolitely your staggering, with a little more  maturity you won't give a damn.   Keep in touch,  Alton  

Re: [TMIC] OT a perfect snowfall

[cherpent]

Alton, thanks for sharing with us. It sounds beautiful over your way! 
Linda in clear, cold Bothell, WA

-- Original message -- From: Alton Ryder [EMAIL PROTECTED]  Today started when I left the house at 6:30 to pick up my son and take him  to Concord, NH. There was a couple of inches of very light snow on the  ground, and many more inches yet to come. Tiny crystals that couldn't stick  on the cold windshield. I had the heater blowing warm air on my hands with  just enough on the windshield to keep it from fogging up with our breath.  For the rare stops I turned cold air onto the windshield. When I returned  home 2 1/2 hours later, the windshield was still clear. I was still quite  comfortable. Ready for a nap.   Traffic had been heavy near Concord during the commuting time, but I only  saw one turkey, an over-powered TransAm that didn't know the snow couldn't  be rushed.   Now, after lunch, the temperature is up to 20°F, and the snowflakes are  giant aggregates the size of a rabbit's tail, floating down with a zillion  companions. Weather and season just right for making biscotti for friends.   Alton, a very happy puppy in Mont Vernon, NH, about to have a foot of this  beautiful stuff   

[TMIC] TMIC Lyrica

[cherpent]

Hi Debbie,

I have Regence Blue Shield. Funny thing, when I was giving myself high doses of methotrexate shots, they were willing to pay for my anti-nausea drug which $54.00!!! per pill!!

My neurologist says he won't give up. He will go some research on other drugs, write another letter to Regence and cc it to the Insurance Commissioner. We'll see what happens. It's ridiculous.

Linda in snowy, icy Bothell, WA

[TMIC] TMIC Lyrica

[cherpent]

Hi Mary Eden,

I don't know the cost of Lyrica, but it has been suggested to me that I do exactly that and I will call the drug rep about it. I think it is pretty expensive, as there is no generic form yet. So I've heard.

I will find out though.

Thanks - Hugs to you

Linda in Bothell, WA

[TMIC] TMIC Lyrica

[cherpent]

Rob,

I'm so glad you have had such success with Lyrica. My neuro gave me a month supply to see ifit agreed with me and helped me. Well I had no side effects and it was the first time in almost 4 years with TM that I have had any relief from the constant burning, tingling etc. So my neuro called in a prescription for me.

Long story short, after 4 appeals, my insurance company will NOT pay for it because it is marketed for those with neuropathic pain associated with diabetes. So I cannot get it! And I am back to the same old burning etc on the neurontin. It only takes the edge off. Really wish I could get the Lyrica back!!!

Good luck - I hope it continues to work wonders for you.

Linda in Bothell, WA

[TMIC] TMIC This is what our group is all about

[cherpent]

Hi Sally,

Thank you for sharing your love and encouragement with all of us. You are so right, there are so many who are struggling with TM ills now it is heartwrenching. This list is so precious as it has brought us all together as a Family. We can completely understand what each person is going through and be supportive. And boy you are so right - take 2 steps forward, and 4 steps backward. Sounds all too familiar.

Thank you again - God Bless all TMers, their families and their caregivers

Linda in Bothell, WA

[TMIC] TMIC A Thanksgiving Wish

[cherpent]

Mary Eden,

Thank you for sharing the wonderful Thanksgiving Wish. That was great!

Wishes for a very Happy Thanksgiving to all!

Hugs

Linda in Bothell, WA

[TMIC] Question re Imuran/Prednisone etc

[cherpent]

Grace,

Frank is right! Please contact your doctor NOW. You should not mess around with a "cold" for 3 weeks! I am on Imuran as well (and a myriad of other drugs) and my doctor has told me to call him if I get I fever, cold, UTI - anything - CALL NOW. PLEASE.

Love you

Linda in Bothell, WA

[TMIC] TMIC no subject

[cherpent]

Hi Gary,

Again, welcome to the TM Family. This is a great place to be. You will find some very kind and supportive people here. And we also have pretty good senses of humor! 

I don't know much about the pain stimulators, but since you have such unbearable pain, can't you leave it on 24 hours a day? Or if you can't, can you at least take some really good "drug cocktail" during the times you can't use the stimulators? I hope you have a good neurologist. There just is no reason to have to live with that kind of pain. And remember to ask your doctor about the new drug LYRICA we talked about.

Please let us know how you are doing. We'll be looking forward to better days for you! Take care

Linda in Bothell, WA (near Seattle)

[TMIC] TMIC I HAVE BEEN AWOL

[cherpent]

Hello Michael,

Welcome back! My name is Linda and I am new in the TM family during the 18 months you were AWOL : - )

We would love to hear your TM story - trials and tribulations. I'm sure your knowledge will be very helpful to all of us. I have had TM for 3.5 years and my lesion is at C 4,5  6. I am among the "wobbling wounded" with all the "good" stuff that goes along with that.

Looking forward to hearing from.

Linda in Bothell, WA

[TMIC] TMIC OT COPPER BRACELET

[cherpent]

Hi Sally,

I have not used the copper bracelet myself, but I do know many people who do - and I've heard they're great.

You mentioned you worked at a horse farm - I assume you don't anymore? My job for the last 31 years was writing Mortality and Major Medical insurance for horses - mostly show horses - but also for a lot of mares. I loved my job, and working with people who either owned horses or worked with them were the greatest people to work with! I really miss it - TM finally forced me to "retire" about a year ago - I think I am still "adjusting"

Thanks for the info on the copper bracelet.

Take care

Linda in Bothell, WA

[TMIC] FW Imuran Question for Frank

[cherpent]

Hi Deb,

Thank you for the chuckle! Since I can't really "feel" my legs to shave them, my doctor told me NOT to - and on top of that, she said "we doctors have seen it all" - which I believe they have.

And I think you are right - it was a MAN who originally suggested women should shave their legs - and furthermore, I think a MAN did the same thing with BRAS!!! They should try having their boobs constricted all day (I have to admit, when I know I'm not leaving the house, I don't wear a bra!) No offense intended for the kind and sensitive men in the TM Family : - )

You go girl!!

Linda in Bothell, WA

[TMIC] TMIC OT/NUNS

[cherpent]

Oh my, that was a good one!

Linda

[TMIC] TMIC - Question re relapse

[cherpent]

Hi Mary,

How are you feeling? Have you gone to your doctor yet or called him? We are all concerned about you, so when you are feeling better please send us a little note.

Hugs and Blessings

Linda in Bothell, WA

[TMIC] Epidural Steroid Injections

[cherpent]

Hi All,

I'm almost afraid of what I might find out, but I need to ask anyway

Has anyone had an Epidural Steroid Injection close to the site of your lesion(s)? I had to go to a neurosurgeon because I am having such pain from my lesion, which I was told has been at C 5-6 and I just learned it is now at C 4,5  6 - how did that happen!

I am going Wednesday to have the ESI by an anesthesiologist at the hospital here in Seattle.

Have any of you ever had this done or have you heard of it?? I have had the IV Steroids but never this. The doctors want to do this procedure so that my pain does not start to go down my arm. It so far has stopped at my shoulder blade.

I would appreciate any input. Thanks from the scaredy-cat : -)

Linda in Bothell, WA

[TMIC] New drug LYRICA

[cherpent]

Hi Patti,

I started out on 50mg capsules. (samples my neuro gave me) When I called for a prescription, they asked me if I wanted the 50mg, 75mg or 100mg. I chose the 75mg - but you can go up to 100mg which is nice - since we're all different with our pain levels.

Be sure to start out slow - my neuro had me take 1 @ bedtime for 3 days, then 1 in the morning and 1 at bedtime for 3 days, then the full dose - 1 in the morning, 1 in afternoon and 1 at bedtime. First time in the 3.5 years I've had TM and the AWFUL, incredible burning that I've had any relief. Love the new Lyrica!

Good luck with it. I hope it works as well for you as it has for me.
Linda insunny Bothell, WA

[TMIC] New Drug LYRICA

[cherpent]

Hi Cindy,

What an ordeal to go through - 3 attacks in 3 years. Goodness. I'm so glad you're on Imuran- it's a great immunosuppressant drug that is supposed to help us so that we don't have another attack! It is awesome that you have gone so long *attack free*

Hugs to you
Linda in Bothell, WA

[TMIC] TMIC iGive

[cherpent]

Hi Mary Eden,

Last night I did sign up for the iGive. It was very easy, and I had an email from them instantly. Lots of stores to choose from too. It's a great idea all around!

Take care - hope all is well with you

Linda in Bothell, WA

[TMIC] New Drug LYRICA

[cherpent]

Hi Cindy,

Good to hear from you - I'm not sure if we have *met* but I look forward to getting to know you.

RE: LYRICA - This is what both my Rheumatologist and my neurologist told me. This new drug has been found to be much more effective for neuropathic pain than neurontin, AND it is taken in much lower dosage. I started slowly, staying partially on the neurontin, then gradually reached the full dose of LYRICA. As I said in a previous post, this is the first time in 3.5+ years I have had such relief in my neuropathic pain. While taking neurontin, I found it only took the *edge* off the pain and by night time NOTHING worked - I just lived with the constant burning. I have not had any of that since taking LYRICA! 

By the way, you mentioned you are also on Imuran - do you have another autoimmune disease as well, or have you had re-current TM? I take it to suppress my immune system so hopefully my body won't go wild and attack my spine again. (I have Sjogrens as well as TM)

Please let me know if you have any other questions. Looking forward to getting to know you

Take care - Linda in Bothell, WA

[TMIC] MMs

[cherpent]

Oh Barbara - you are too funny. At least you had your *vitamins* for the day! Good girl : - )

Linda in Bothell, WA

[TMIC] TMIC Sequel

[cherpent]

Hi Sue,

I am so sorry about your recent diagnosis of MS, and after 5 years with TM. I can also understand your depression and fatigue and overwhelming feelings. It is hard to understand and even harder to *accept* I'm glad you admitted that you are in denial for the time being. That just makes you human. I have only had TM 3.5+ years and quite honestly I have put MS on the back burner because I have also felt *safe* after this much time. However, we hear many stories right here on the TMIC that prove otherwise.

Please give yourself time to adjust to this new diagnosis. I hope you have a great neurologist who will start you on aggressive MS meds to keep any progression at a snails pace. They have come a long way with treating MS and I know you will do very well - you just need some time for it to sink in. (Then take the bull by the horns and take control! You can do it).

Hugs - Take care and be sure to let all of us know how you are doing. The entire TM family is here for you!

Linda in Bothell, WA

[TMIC] New Drug LYRICA

[cherpent]

Hi Sally,

I'm sorry to hear that Lyrica caused weight gain with your husband. I have not had ANY side effects with this drug, and I am now at maximum dose, after gradually working myself up to it. I know a lot of people said neurontin caused weight gain also. I did not have that side effect with neurontin either. I'm thinking it's probably because I am on a chemo drug (Imuran) - they probably balance each other out. (Last week I lost weight, so this week I thought maybe I should add some *vitamins* to my diet: MM's 
best vitamins made!)

Hope your husband feels better!
Take care
Linda in Bothell, WA

Re: [TMIC] shop online to benefit TMA

[cherpent]

Thanks Jim. What a good idea. Timing couldn't be better with the Holidays approaching. 
Linda

-- Original message --  I just want to remind everyone who shops online that when you go to  your favorite store by starting at iGive.com, a percentage of your  order will get donated to The Transverse Myelitis Association.   Just join iGive.com (it's free) before you shop.  http://www.iGive.com/TMA   New Members: get an extra $5 donation, on top of the money you raise  by shopping through iGive.com!   Join iGive.com for free and make your first purchase within 45 days  of joining. They'll donate an extra $5!   I just checked my personal stats, last year I earned $41.86 for TMA  through iGive.   Jim

[TMIC] Question - relapse

[cherpent]

Hi Mary,

Is it possible for you to call your neurologist and tell him what is going on? Instead of waiting until 11/3/05. He might want you to go in for another MRI just to make sure there are no changes going on. Please do call - it may relieve some of the anxiety - we all get it when "changes" occur

Wishing you the best
Linda in Bothell, WA

[TMIC] New Drug LYRICA

[cherpent]

Hi All,

Saw my neurologist last week and he gave me a sample bottle of the new drug LYRICA. He started me out on one at night for 3 days, then one in the a.m. and p.m. for 3 days, then one three times a day - still taking the neurontin. Then I go back the middle of Nov to let him know how it's working. Well, it's working! I can't remember a day in the last 3.5+ years when I have not had constant burning, tingling - the works. It's wonderful. The neurontin only took the edge off the burning for me - and sometimes not even that.

He will then wean me off the neurontin and see if the Lyrica alone will do the job. Anybody else out there taking the new drug??
Also, I have had no side effects at all.

Linda in Bothell WA

[TMIC] I'm Back

[cherpent]

Hi Elisabeth,

Just checking up on up to see how you are doing. I know you are probably not up to sitting at the computer yet, but wanted to let you know we are all thinking of you. The last we heard, you had an appointment on the 2nd because something was still wrong. Our thoughts and prayers are with you.

Would we happy to hear from you when you are up to it. You have been through so much and we know how strong you are. We know you have lots of fight in you so give it your all!!

Hope you are well enough soon so that you can bring us up to date on how you are doing. We are anxiously awaiting.

Blessings from your concerned TM Family

Linda in Bothell, WA