Fw: J & MJ on line again

[Guest guest]

J & MJ on line again

Dear Sharon, and Lynn My husband J ,who has MS subscribed over a year ago to your list server. I did more reading than he did. I felt like I knew each person and was concerned about each of them. Some of the special problems discussed helped us make good decisions. The band around the chest and spasms could have been scary, except I had read about it on this server. Thank you.Right now he is receiving Betaseron shots every other day. He just had 1000 mg of Solumedrol for 5 days IV We love the Ready Med form of this . It is so easy to give at home, Other meds are Balofin ,Neuriotin and Provigle . He works part time at his old job as an engineer. We are traveling a lot. J uses a walking stick sometimes . The main problems are PAIN in the legs, cramping and debilitating fatigue . We are waiting to hear from Wake Forest, Bowman Gray Hospital in NC for a time to receive the new medication Tysabri at the hospital. They are working out the insurance part of it now. It is supposed to take 4 weeks after your Dr has Tysabri people call you and start things rolling. They have a # any one can call for info and help. We are looking forward to trying this I learn a lot from this list. Thank you.Here is more info than you want to know about us . We just applied for passports to travel . We camp in a popup camper or a tent. We are near retirement age ,60 and have two wonderful married daughters and two great son in laws. Our first grandbaby is due in July. Our pet collection includes 4 cats and a 140 lb Great Dane , all indoors most of the time . All were rescues that needed to live with us. of course! We live in rural VA in a two story farm house. Our area's claim to fame is that the movie Dirty Dancing was filmed on one of our mountains at Mountain Lake Hotel. It is pretty here. Our hobbies include photography, printing photos ,painting with water colors,knitting and genealogy . We helped start the web site http://www.ghotes.net/ . That site is Family History of the Eastern Shore of VA There is more work in web site development than you can imagine ! Hours and hours !! and more. I hope this is a good introduction to us. I look forward to seeing how other are doing since I last heard about them.In case there is any doubt I don't type and spell even worst despite a college education. If any one needs info on dyslexia we are the ones Good wishes for all. Jane -- No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.300 / Virus Database: 265.8.5 - Release Date: 2/3/2005

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[Guest guest]

Hi MJ,

It's nice to meet you! )

Lynn may have told you already, but Sharon (my Mother) isn't online at the moment. Hopefully she will be back very soon! <gg> In the meantime, I'll make a note to let her know you're back onlist when she calls next. )

I'm seeking my own dx and finding MS seems to fit me well enough to continue exploring it. I can trace potential symptoms back to '95 / '96 I believe. I've recently had my labs and MRI and saw a Neuro who told me it was all in my head and the result of nursing. More or less. LOL

My husband, , and I live out in Arizona where we're raising five children (the eldest is over 18 now... that's actually my ½-brother, one of my Dad's children). It's a blustery day in northeastern AZ today, and is quite thrilled to have the wind as he's climbing to the roof and replacing a few shingles as soon as the frost is gone from the roof. Woohoo! LOL

Challis

J & MJ on line again

Dear Sharon, and Lynn My husband J ,who has MS subscribed over a year ago to your list server. I did more reading than he did. I felt like I knew each person and was concerned about each of them. Some of the special problems discussed helped us make good decisions. The band around the chest and spasms could have been scary, except I had read about it on this server. Thank you.Right now he is receiving Betaseron shots every other day. He just had 1000 mg of Solumedrol for 5 days IV We love the Ready Med form of this . It is so easy to give at home, Other meds are Balofin ,Neuriotin and Provigle . He works part time at his old job as an engineer. We are traveling a lot. J uses a walking stick sometimes . The main problems are PAIN in the legs, cramping and debilitating fatigue . We are waiting to hear from Wake Forest, Bowman Gray Hospital in NC for a time to receive the new medication Tysabri at the hospital. They are working out the insurance part of it now. It is supposed to take 4 weeks after your Dr has Tysabri people call you and start things rolling. They have a # any one can call for info and help. We are looking forward to trying this I learn a lot from this list. Thank you.Here is more info than you want to know about us . We just applied for passports to travel . We camp in a popup camper or a tent. We are near retirement age ,60 and have two wonderful married daughters and two great son in laws. Our first grandbaby is due in July. Our pet collection includes 4 cats and a 140 lb Great Dane , all indoors most of the time . All were rescues that needed to live with us. of course! We live in rural VA in a two story farm house. Our area's claim to fame is that the movie Dirty Dancing was filmed on one of our mountains at Mountain Lake Hotel. It is pretty here. Our hobbies include photography, printing photos ,painting with water colors,knitting and genealogy . We helped start the web site http://www.ghotes.net/ . That site is Family History of the Eastern Shore of VA There is more work in web site development than you can imagine ! Hours and hours !! and more. I hope this is a good introduction to us. I look forward to seeing how other are doing since I last heard about them.In case there is any doubt I don't type and spell even worst despite a college education. If any one needs info on dyslexia we are the ones Good wishes for all. Jane

[Guest guest]

I was a flight attendant for 25 years, if you are flying out of Roanoke, you can take ( 4days) or syringes I believe. Better to call the airline and ask, they will know the latest.

Bette

[Guest guest]

Thanks for the welcome.

Arizona sounds nice. There are remnants of snow in our S W Va yard. It

is sunny,52 degrees and I was just in the hot tub doing stretches for my

knees and hips. I'm going to try this for a while . My husband won't get

in the hot tub even at temperature of 87 which the MS Neuro recommended for

him if he wanted to do water exercises. . Heat is such an enemy to him .

Tomorrow we call the neuro dr to see what the decision is on

the Trysabri infusions . We hope we are at the point where all we need to

do is set a date to go to the hospital. It has to be mixed before they

infuse it. It is an out patient thing. We enjoy going to Winston Salem NC

for the day. I always want a lunch at TGIFridays . That makes the trip more

fun. Fun is good :)

Has any one ever rented a scooter to get around a park? I saw that the

Zoo in CA had them for rental as well as wheel chairs .We have never done

this. The terrible fatigue is our problem. We want to see as much as

possible and take lots of pictures We will be in the San Diego and Orange

Co area. Any advice on this will be appreciated.

Is from S. America still on this list server,? I read and felt I

knew people even though I was quiet

MJ

[Guest guest]

I will be interested in how your husband does with the Trysabri infusions because the last time I saw my neurologist he made mention of the new MS treatment and told me he wanted to see some results before recommending for me. I am on Copaxone right now.

We went to Disney World in the spring of 2003 and I rented a powered wheelchair there and it worked great for me. I have my manual wheelchair I use when I go places but the powered wheelchair was so much better. I would recommend it.

Bill

Re: Fw: J & MJ on line again

Thanks for the welcome. Arizona sounds nice. There are remnants of snow in our S W Va yard. It is sunny,52 degrees and I was just in the hot tub doing stretches for my knees and hips. I'm going to try this for a while . My husband won't get in the hot tub even at temperature of 87 which the MS Neuro recommended for him if he wanted to do water exercises. . Heat is such an enemy to him . Tomorrow we call the neuro dr to see what the decision is on the Trysabri infusions . We hope we are at the point where all we need to do is set a date to go to the hospital. It has to be mixed before they infuse it. It is an out patient thing. We enjoy going to Winston Salem NC for the day. I always want a lunch at TGIFridays . That makes the trip more fun. Fun is good :) Has any one ever rented a scooter to get around a park? I saw that the Zoo in CA had them for rental as well as wheel chairs .We have never done this. The terrible fatigue is our problem. We want to see as much as possible and take lots of pictures We will be in the San Diego and Orange Co area. Any advice on this will be appreciated. Is from S. America still on this list server,? I read and felt I knew people even though I was quiet MJ

[Guest guest]

Where in WV are yo? I'm in sburg,and you just described the weather right here...Are you going to Dr Varga by any chance? I'm also on Copaxone and he also did mention that Tysabri is the next step if the Copaxone is not doing it for me, and it isn't (see my blog, link below)

Peace & Blessings~*~Akiba ~*~Pragmatic VisionaryAIM ~ AkybaICQ 59094928MSN ~ akyba@...Yahoo~ AkybaI have the perfect Goddess body.....Venus.....(of Willendorf)I have MS, MS does Not have Me!My Bloghttp://yodamamma.blogspot.com

Re: Fw: J & MJ on line again

Thanks for the welcome. Arizona sounds nice. There are remnants of snow in our S W Va yard. It is sunny,52 degrees and I was just in the hot tub doing stretches for my knees and hips. I'm going to try this for a while . My husband won't get in the hot tub even at temperature of 87 which the MS Neuro recommended for him if he wanted to do water exercises. . Heat is such an enemy to him .

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[Guest guest]

>Thanks Bil,

Another question for you all, Are there any problems with carrying your

shots and other meds on an airplane. I have not flown in 27 years and am

very behind the times. Tell me anything We will fly North west Va to CA.

I

know nothing!

MJ

[Guest guest]

Akiba

Thanks for your note,

I checked out your blog. Love it! Do you take any analgesics before your

shot . My hubbie in the beginning took 3 Aleive and one or 2 tylenol an

hour before the shots. Now he just takes the shot. He is on Betaserone for

3 years now.

I'm in Va but can see the West Va Mts out the front window. Is that

Almost, Almost Heaven:) WV.

The Tyrsabri shots we hope to try in the next couple of weeks. Our Neuro

, Dr Jefferies of Bowman Gray Hospital in NC ,2 from us hrs away from us,

has used Tyrsabri serveral times with out any problem.

Good Luck

MJ

[Guest guest]

No, I am usually half asleep, my hubby gives it to me early in the morning then I roll over and go back to sleep. But I'm not going to takt it until I see the Dr again (this week) since I don't like the side effects I'v having.

Peace & Blessings~*~Akiba ~*~Pragmatic VisionaryAIM ~ AkybaICQ 59094928MSN ~ akyba@...Yahoo~ AkybaI have the perfect Goddess body.....Venus.....(of Willendorf)I have MS, MS does Not have Me!My Bloghttp://yodamamma.blogspot.com

Re: Fw: J & MJ on line again

Akiba Thanks for your note, I checked out your blog. Love it! Do you take any analgesics before your shot . My hubbie in the beginning took 3 Aleive and one or 2 tylenol an hour before the shots. Now he just takes the shot. He is on Betaserone for 3 years now. I'm in Va but can see the West Va Mts out the front window. Is that Almost, Almost Heaven:) WV. The Tyrsabri shots we hope to try in the next couple of weeks. Our Neuro , Dr Jefferies of Bowman Gray Hospital in NC ,2 from us hrs away from us, has used Tyrsabri serveral times with out any problem.Good Luck MJ

No virus found in this incoming message.Checked by AVG Anti-Virus.Version: 7.0.300 / Virus Database: 265.8.5 - Release Date: 2/3/2005

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Checked by AVG Anti-Virus.

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[Guest guest]

Hi MJ,

As far as I know, isn't on the list now. I could be wrong. lol

My brother just flew into the Valley (Phoenix, etc.) this weekend and says it's "hot!" LOL Sure, it's in the 60ºs there and when he flew out of Alaska it was -12ºs. That's a big jump! LOL

It's warmer here today than it had been last week, and at 9:30 we were at just under 40º with the wind bringing us further into the 30ºs. We hear we may get rain or snow today. We'll see. LOL

Challis

Thanks for the welcome. Arizona sounds nice. There are remnants of snow in our S W Va yard. It is sunny,52 degrees and I was just in the hot tub doing stretches for my knees and hips. I'm going to try this for a while . My husband won't get in the hot tub even at temperature of 87 which the MS Neuro recommended for him if he wanted to do water exercises. . Heat is such an enemy to him . Tomorrow we call the neuro dr to see what the decision is on the Trysabri infusions . We hope we are at the point where all we need to do is set a date to go to the hospital. It has to be mixed before they infuse it. It is an out patient thing. We enjoy going to Winston Salem NC for the day. I always want a lunch at TGIFridays . That makes the trip more fun. Fun is good :) Has any one ever rented a scooter to get around a park? I saw that the Zoo in CA had them for rental as well as wheel chairs .We have never done this. The terrible fatigue is our problem. We want to see as much as possible and take lots of pictures We will be in the San Diego and Orange Co area. Any advice on this will be appreciated. Is from S. America still on this list server,? I read and felt I knew people even though I was quiet MJ