RE: scooter pic

[Guest guest]

I bought that scooter 4 years ago used, for $700. I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health. Plus my grandkids have ridden it around the driveway & down the street more times than I can remember! I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 14 Nov 2010 22:34:08 -0700Subject: Re: scooter pic

Rose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Attachment(s) from Rose included below] I finally got around to uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one. My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then! I'll post the photo in the album "Rose's World" on the NS homepage, for those who can't open it.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense?  I don't know if I'm in a flare, or this is just the way I'm going.

don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I bought that scooter 4 years ago used, for $700.  I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health.  Plus my grandkids have ridden it around the driveway & down the street more times than I can remember!  I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment. 

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22  

To: Neurosarcoidosis From: mebramer@...Date: Sun, 14 Nov 2010 22:34:08 -0700

Subject: Re: scooter pic

Rose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

[Attachment(s) from Rose included below] I finally got around to  uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one.  My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then!  I'll post the photo in the album " Rose's World " on the NS homepage, for those who can't open it.

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

 

[Guest guest]

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok! To: Neurosarcoidosis Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense? I don't know if I'm in a flare, or this is just the way I'm going.

don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I bought that scooter 4 years ago used, for $700. I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health. Plus my grandkids have ridden it around the driveway & down the street more times than I can remember! I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment.

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 14 Nov 2010 22:34:08 -0700

Subject: Re: scooter pic

Rose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

[Attachment(s) from Rose included below] I finally got around to uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one. My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then! I'll post the photo in the album "Rose's World" on the NS homepage, for those who can't open it.

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Barbara, thanks for posting. Do you notice a difference with the IVIG?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: beautybarnweber@...Date: Tue, 16 Nov 2010 12:21:46 -0800Subject: Re: scooter pic

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok!

To: Neurosarcoidosis Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense? I don't know if I'm in a flare, or this is just the way I'm going. don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I bought that scooter 4 years ago used, for $700. I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health. Plus my grandkids have ridden it around the driveway & down the street more times than I can remember! I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 14 Nov 2010 22:34:08 -0700Subject: Re: scooter picRose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Attachment(s) from Rose included below] I finally got around to uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one. My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then! I'll post the photo in the album "Rose's World" on the NS homepage, for those who can't open it.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

well as i tell everybody , i have good days and bad. i am better than i was but not where i should be. to answer your question i definately can tell when i am due for infusion i joke that i have to get my gas tank filled! lol . i honestly don't know that i feel better because some days i can walk like a champ and other days i am a crippled mess! one thing for sure is that my family and friends will not let me get down about this crap! i am very fortunate to have a wonderful caring husband and friends that make me laugh everyday! laughter is the BEST MEDICINE. i hope you are doing well rose! To: neurosarcoidosis Sent: Tue, November 16, 2010 7:47:55 PMSubject: RE: scooter pic

Barbara, thanks for posting. Do you notice a difference with the IVIG?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: beautybarnweber@...Date: Tue, 16 Nov 2010 12:21:46 -0800Subject: Re: scooter pic

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok!

To: Neurosarcoidosis Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense? I don't know if I'm in a flare, or this is just the way I'm going. don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I bought that scooter 4 years ago used, for $700. I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health. Plus my grandkids have ridden it around the driveway & down the street more times than I can remember! I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 14 Nov 2010 22:34:08 -0700Subject: Re: scooter picRose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Attachment(s) from Rose included below] I finally got around to uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one. My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then! I'll post the photo in the album "Rose's World" on the NS homepage, for those who can't open it.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

I have terrible neuropathy, and dystonia too, I've been told it's from the NS.  How long do your infusions last, and do they help a lot or a little? I get Remicade every 5 weeks, and it last about 4, then I just hang in there until I get it,  it has helped me a lot though, before the Remicade I was walking with a cane, lot of trouble getting around, and terrible burning neuropathy,  I still have some, and worse on cold days, and I still have trouble getting around but not not using a cane, although some days I think I should. 

Take care of yourself and hope you get to feeling better soon. God Bless,MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok!

  

To: Neurosarcoidosis

Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic

 

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense?  I don't know if I'm in a flare, or this is just the way I'm going.

don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I bought that scooter 4 years ago used, for $700.  I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health.  Plus my grandkids have ridden it around the driveway & down the street more times than I can remember!  I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment. 

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22  

To: Neurosarcoidosis From: mebramer@...

Date: Sun, 14 Nov 2010 22:34:08 -0700

Subject: Re: scooter pic

Rose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

[Attachment(s) from Rose included below] I finally got around to  uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one.  My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then!  I'll post the photo in the album " Rose's World " on the NS homepage, for those who can't open it.

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

 

[Guest guest]

well as i tell everybody , i have good days and bad. i am better than i was but not where i should be. to answer your question i definately can tell when i am due for infusion i joke that i have to get my gas tank filled! lol . i honestly don't know that i feel better because some days

i can walk like a champ and other days i am a crippled mess! one thing for sure is that my family and friends will not let me get down about this crap! i am very fortunate to have a wonderful caring husband and friends that make me laugh everyday! laughter is the BEST MEDICINE. i hope you are doing well marla!! i was thinking of asking my dr. at the cc to put me back on remicade and ivig. To: Neurosarcoidosis Sent: Wed, November 17, 2010 12:25:50 PMSubject: Re: scooter pic

I have terrible neuropathy, and dystonia too, I've been told it's from the NS. How long do your infusions last, and do they help a lot or a little? I get Remicade every 5 weeks, and it last about 4, then I just hang in there until I get it, it has helped me a lot though, before the Remicade I was walking with a cane, lot of trouble getting around, and terrible burning neuropathy, I still have some, and worse on cold days, and I still have trouble getting around but not not using a cane, although some days I think I should.

Take care of yourself and hope you get to feeling better soon. God Bless,MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok!

To: Neurosarcoidosis

Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense? I don't know if I'm in a flare, or this is just the way I'm going.

don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I bought that scooter 4 years ago used, for $700. I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health. Plus my grandkids have ridden it around the driveway & down the street more times than I can remember! I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment.

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...

Date: Sun, 14 Nov 2010 22:34:08 -0700

Subject: Re: scooter pic

Rose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

[Attachment(s) from Rose included below] I finally got around to uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one. My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then! I'll post the photo in the album "Rose's World" on the NS homepage, for those who can't open it.

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Just like you, Barb, good days & bad (sometimes good moments & bad!). The worst thing is that I have never liked roller coasters, so it sucks to be stuck on one for the rest of my life! Although I guess that's better than just being in the pits all the time. Make any sense?!?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

It's not that life is so short-------It's that we wait so long to begin.

(attributed to Wooden, among others)

To: Neurosarcoidosis From: beautybarnweber@...Date: Wed, 17 Nov 2010 07:22:58 -0800Subject: Re: scooter pic

well as i tell everybody , i have good days and bad. i am better than i was but not where i should be. to answer your question i definately can tell when i am due for infusion i joke that i have to get my gas tank filled! lol . i honestly don't know that i feel better because some days i can walk like a champ and other days i am a crippled mess! one thing for sure is that my family and friends will not let me get down about this crap! i am very fortunate to have a wonderful caring husband and friends that make me laugh everyday! laughter is the BEST MEDICINE. i hope you are doing well rose!

To: neurosarcoidosis Sent: Tue, November 16, 2010 7:47:55 PMSubject: RE: scooter pic

Barbara, thanks for posting. Do you notice a difference with the IVIG?

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: beautybarnweber@...Date: Tue, 16 Nov 2010 12:21:46 -0800Subject: Re: scooter pic

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok!

To: Neurosarcoidosis Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense? I don't know if I'm in a flare, or this is just the way I'm going. don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I bought that scooter 4 years ago used, for $700. I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health. Plus my grandkids have ridden it around the driveway & down the street more times than I can remember! I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...Date: Sun, 14 Nov 2010 22:34:08 -0700Subject: Re: scooter picRose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

[Attachment(s) from Rose included below] I finally got around to uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one. My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then! I'll post the photo in the album "Rose's World" on the NS homepage, for those who can't open it.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

Were you on both at what time, I have not heard of that, why did you stop the Remicade? I'm doing OK, and next week I get Remicade, so that will help me too. Like you I have good and bad days, bad days just sit around and do nothing, good days try to get too much done because you feel better which leads to a bad day because you did too much:)

I guess that's just the way of the world with Sarc. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

well as i tell everybody , i have good days and bad. i am better than i was but not where i should be. to answer your question i definately can tell when i am due for infusion i joke that i have to get my gas tank filled! lol . i honestly don't know that i feel better because some days

i can walk like a champ and other days i am a crippled mess! one thing for sure is that my family and friends will not let me get down about this crap! i am very fortunate to have a wonderful caring husband and friends that make me laugh everyday! laughter is the BEST MEDICINE. i hope you are doing well marla!! i was thinking of asking my dr. at the cc to put me back on remicade and ivig.  

To: Neurosarcoidosis

Sent: Wed, November 17, 2010 12:25:50 PMSubject: Re: scooter pic

 

I have terrible neuropathy, and dystonia too, I've been told it's from the NS.  How long do your infusions last, and do they help a lot or a little? I get Remicade every 5 weeks, and it last about 4, then I just hang in there until I get it,  it has helped me a lot though, before the Remicade I was walking with a cane, lot of trouble getting around, and terrible burning neuropathy,  I still have some, and worse on cold days, and I still have trouble getting around but not not using a cane, although some days I think I should. 

Take care of yourself and hope you get to feeling better soon. God Bless,MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok!

  

To: Neurosarcoidosis

Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic

 

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense?  I don't know if I'm in a flare, or this is just the way I'm going.

don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I bought that scooter 4 years ago used, for $700.  I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health.  Plus my grandkids have ridden it around the driveway & down the street more times than I can remember!  I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment. 

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22  

To: Neurosarcoidosis From: mebramer@...

Date: Sun, 14 Nov 2010 22:34:08 -0700

Subject: Re: scooter pic

Rose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

[Attachment(s) from Rose included below] I finally got around to  uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one.  My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then!  I'll post the photo in the album " Rose's World " on the NS homepage, for those who can't open it.

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22 

 

[Guest guest]

currently i am getting ivig, arava 20mg, and ultram for pain. they stopped the remicade because the sarc was "quiet" (whatever that means). they will not call it remission though. my syptoms are weakness, heaviness of legs, eye twitches, dystonia spasms, fatique, and walking difficulties oh yeah not to mention post herpetic neuralgia from shingles! wow thought all this crap comes when we are old??? To: Neurosarcoidosis Sent: Thu, November 18, 2010 12:47:59 PMSubject: Re: scooter pic

Were you on both at what time, I have not heard of that, why did you stop the Remicade? I'm doing OK, and next week I get Remicade, so that will help me too. Like you I have good and bad days, bad days just sit around and do nothing, good days try to get too much done because you feel better which leads to a bad day because you did too much:)

I guess that's just the way of the world with Sarc. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

well as i tell everybody , i have good days and bad. i am better than i was but not where i should be. to answer your question i definately can tell when i am due for infusion i joke that i have to get my gas tank filled! lol . i honestly don't know that i feel better because some days

i can walk like a champ and other days i am a crippled mess! one thing for sure is that my family and friends will not let me get down about this crap! i am very fortunate to have a wonderful caring husband and friends that make me laugh everyday! laughter is the BEST MEDICINE. i hope you are doing well marla!! i was thinking of asking my dr. at the cc to put me back on remicade and ivig.

To: Neurosarcoidosis

Sent: Wed, November 17, 2010 12:25:50 PMSubject: Re: scooter pic

I have terrible neuropathy, and dystonia too, I've been told it's from the NS. How long do your infusions last, and do they help a lot or a little? I get Remicade every 5 weeks, and it last about 4, then I just hang in there until I get it, it has helped me a lot though, before the Remicade I was walking with a cane, lot of trouble getting around, and terrible burning neuropathy, I still have some, and worse on cold days, and I still have trouble getting around but not not using a cane, although some days I think I should.

Take care of yourself and hope you get to feeling better soon. God Bless,MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok!

To: Neurosarcoidosis

Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense? I don't know if I'm in a flare, or this is just the way I'm going.

don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)

I bought that scooter 4 years ago used, for $700. I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health. Plus my grandkids have ridden it around the driveway & down the street more times than I can remember! I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment.

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: mebramer@...

Date: Sun, 14 Nov 2010 22:34:08 -0700

Subject: Re: scooter pic

Rose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)

[Attachment(s) from Rose included below] I finally got around to uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one. My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then! I'll post the photo in the album "Rose's World" on the NS homepage, for those who can't open it.

Ramblin' RoseModerator

A merry heart is good medicine. Proverbs 17:22

[Guest guest]

IF you still have symptoms,especially if you are still having problems with your legs and fatigue, did you do better when you were on all the drugs?  I have the heavy legs, when I'm tired they get really heavy some days I feel like I can't lift them anymore.  You might want to just ask your doctor what he thinks about putting you back on the Remicade.

marlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

currently i am getting ivig, arava 20mg, and ultram for pain. they stopped the remicade because the sarc was " quiet " (whatever that means). they will not call it remission though. my syptoms are weakness, heaviness of legs, eye twitches, dystonia spasms, fatique, and walking difficulties oh yeah not to mention post herpetic neuralgia from shingles! wow thought all this crap comes when we are old???

 

To: Neurosarcoidosis

Sent: Thu, November 18, 2010 12:47:59 PMSubject: Re: scooter pic

 

Were you on both at what time, I have not heard of that, why did you stop the Remicade? I'm doing OK, and next week I get Remicade, so that will help me too. Like you I have good and bad days, bad days just sit around and do nothing, good days try to get too much done because you feel better which leads to a bad day because you did too much:)

I guess that's just the way of the world with Sarc. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

well as i tell everybody , i have good days and bad. i am better than i was but not where i should be. to answer your question i definately can tell when i am due for infusion i joke that i have to get my gas tank filled! lol . i honestly don't know that i feel better because some days

i can walk like a champ and other days i am a crippled mess! one thing for sure is that my family and friends will not let me get down about this crap! i am very fortunate to have a wonderful caring husband and friends that make me laugh everyday! laughter is the BEST MEDICINE. i hope you are doing well marla!! i was thinking of asking my dr. at the cc to put me back on remicade and ivig.  

To: Neurosarcoidosis

Sent: Wed, November 17, 2010 12:25:50 PMSubject: Re: scooter pic

 

I have terrible neuropathy, and dystonia too, I've been told it's from the NS.  How long do your infusions last, and do they help a lot or a little? I get Remicade every 5 weeks, and it last about 4, then I just hang in there until I get it,  it has helped me a lot though, before the Remicade I was walking with a cane, lot of trouble getting around, and terrible burning neuropathy,  I still have some, and worse on cold days, and I still have trouble getting around but not not using a cane, although some days I think I should. 

Take care of yourself and hope you get to feeling better soon. God Bless,MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

i have the exact same thing going on marla! i have not posted in along time...diagnosed with small fiber neuropathy , and dystonia as well as neurosarcoidosis! just overall feeling like crap! i get 8 hour ivig infusions every 2 weeks! i hope everyone is feeling ok!

  

To: Neurosarcoidosis

Sent: Mon, November 15, 2010 11:32:11 PMSubject: Re: scooter pic

 

I have a feeling someday, I find that my legs feel so heavy, and it feels like I've done a work out, the muscles feel tired, and it just wears me out, if I walk too much, I get so hot, and my legs feel like cement, does that make sense?  I don't know if I'm in a flare, or this is just the way I'm going.

don't have time right now to check on things for me, probably should at least ask for a Steroid boost, but I am over due with my blood work, so I better get that done. Marla

Just one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too is just today:)  

 

I bought that scooter 4 years ago used, for $700.  I've put a lot of miles on it--several trips to the Indiana State Fair, the Mutt Strut at the Indpls. Motor Speedway, gone to the Purdue Bug Bowl, various events that required lots of walking, the annual Hike for Lung Health.  Plus my grandkids have ridden it around the driveway & down the street more times than I can remember!  I had to replace the front tire & last year I got new batteries; I've probably put $100 in it, so it's been worth the investment. 

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22  

To: Neurosarcoidosis From: mebramer@...

Date: Sun, 14 Nov 2010 22:34:08 -0700

Subject: Re: scooter pic

Rose I love the scooter, looks like a lot more fun then my stupid wheelchair, oh well in time. MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

[Attachment(s) from Rose included below] I finally got around to  uploading the pictures from my trip to Virginia last month & thought y'all would get a kick out of this one.  My scooter batteries were getting a little low after visiting just about all of the monuments & memorials in D.C., so I needed a push now & then!  I'll post the photo in the album " Rose's World " on the NS homepage, for those who can't open it.

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22