Re: Return to Camp Baughman

[Guest guest]

Rose,

It's so wonderful to hear there are still kind generous people in the

world. I'm happy to hear that.

Do you have Diabetes? Just wondering, if the feet could have two

things going on with the neuropathy?

Your in my prayers,

Marla

Well, I went back to see Dr. Bob Thursday.

(Elodia, I forgot all about trying to stop & see you until we were

almost back to . I'm sorry.)

The friends who drove me down insisted on driving

their van, so it was more comfortable than taking my car. Plus, they

wouldn't let me pay for any gas! What angels. It's about 5 hours

round-trip. They even brought all kinds of snacks & sandwiches.

Anyway, the visit was productive in that it's

helped me make a decision about the next move. You might remember

that we were considering Cytoxan, or Remicade in the unlikely case that

Medicare approved it. So I wrote down the 4 worst symptoms for me:

neuropathic pain in feet, fatigue, muscle weakness & memory &

mental problems. I asked him what were the odds that Cytoxan would

help them. He said that in his experience the fatigue & muscle

weakness would not be helped at all, the pain maybe a little. The

likely improvement would be in memory, but possibly not enough to get

me back to work. Then he said that we should make sure the disease was

still active, as my symptoms could be from scar tissue, that is, damage

already done. In that case, the Cytoxan wouldn't do any good. I don't

want to take Cytoxan, with all its risks, if there is no active

disease. One option he suggested was to go off the MTX & see if my

symptoms got worse (would take a couple of months). If so, then he

would assume the sarc was active & encourage the Cytoxan or at

least resuming the MTX.

I think I'm going to stop the MTX (after discussing

it all with Larry my local neuro on Monday) & see what happens. If

I get worse, or develop new symptoms, then I'll take the Cytoxan. He

also suggested resuming the MTX since the Cytoxan can take 6-12 months

to kick in. But then after 2 years, the risk of bladder cancer goes

up. By then, I guess I could go for the Remicade, or maybe there will

be another treatment by then.

Last night & today I have been kind of

depressed, thinking that there is a good chance that this (my current

condition) is as good as it's gonna get. And when I can't take the MTX

or the Cytoxan, and when I develop a reaction to the Remicade or it's

not working anymore, I'll just have to sit back & wait for Ol'

Sarky to pop up somewhere new. Maybe I'm too pessimistic.

Oh, here's an interesting sidenote. I knew that

there had been some interest in Thalidomide, but didn't know about any

success. Dr. Bob said that in a small trial they did, it tended to

relieve the pain of peripheral neuropathy, but not the numbness. So

that was an option for the pain in my feet, which is really getting

debilitating. Downside, besides jumping through many large hoops for

approval, it costs several hundred $ per month. I didn't even ask

about side effects. Right now I don't think I'd be interested. If

these feet get much worse I might give it another look. Anybody else

tried that?

Well, I know there is more, but I'm really tired,

so I'm hitting the sack.

P.S. I got another break this week. I've had

trouble with an upper molar for a couple of years, hurting off &

on. It has a large filling in it, the tooth had cracked a year or so

ago & had to be repaired. It started hurting really bad a couple

of weeks ago. My dentist thought it needed a root canal, so he sent me

to an endodontist, who had done 2 other root canals on me. BTW, I

don't think they are bad at all. I was thinking that I would just get

the tooth pulled rather than get a root canal because I don't have

dental insurance or money for a root canal. The endodontist happens to

be the husband of a doctor friend of mine. I worked with her over 25

years ago as a nurse when she was an OB resident. I explained that I

didn't have insurance anymore. I'd like to save the tooth because I

had already lost the molar behind it, but I'd have to work out a long

payment plan for a root canal. He told me he wasn't going to charge

me! Nothing! When I said that I felt like I should give him

something, he smiled and said, "A cookie!" So I'm making a big choc.

chip cookie to take in next week when he finishes the root canal. It

sure pays to have friends in grody places.

Ramblin'

Rose

Moderator

Find

flowers, candy and directions to a romantic restaurant with Windows

Live Local

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

[Guest guest]

Marla, I was borderline diabetic back when I was still on the Pred, but I've been fine since. I check myself with my mom's glucometer occasionally & I just had a Hg A1C, which tells you what your average blood sugar has been for the past 3 months. It was normal. My circulation to my feet is good too.

I did just discover a weird thing though. I was checking myself with a pin (you know, the sharp/dull test) to see if the neuropathy was moving up my legs. It was hard to tell because I kept getting electric shocks when I would touch the skin. So I decided to try it somewhere that I knew would be sharp. I poked my belly & it felt pretty dull. I kept going around the side until "ouch!" Then I started from the middle & went around to the other side. Same thing. So I moved farther down my stomach & then higher up onto my chest. It was like a line down my body from sharp to dull! I couldn't reach around to the back far enough to check it. When I saw my neuro today I asked him about it, and he said it's part of the neuropathy. Have any of you heard of this? Now is the time for all good sarcoidians to grab their pins & poke themselves, in the name of science!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Return to Camp BaughmanDate: Sat, 11 Feb 2006 13:20:57 -0800

Rose, It's so wonderful to hear there are still kind generous people in the world. I'm happy to hear that. Do you have Diabetes? Just wondering, if the feet could have two things going on with the neuropathy? Your in my prayers, Marla

Well, I went back to see Dr. Bob Thursday. (Elodia, I forgot all about trying to stop & see you until we were almost back to . I'm sorry.)

The friends who drove me down insisted on driving their van, so it was more comfortable than taking my car. Plus, they wouldn't let me pay for any gas! What angels. It's about 5 hours round-trip. They even brought all kinds of snacks & sandwiches.

Anyway, the visit was productive in that it's helped me make a decision about the next move. You might remember that we were considering Cytoxan, or Remicade in the unlikely case that Medicare approved it. So I wrote down the 4 worst symptoms for me: neuropathic pain in feet, fatigue, muscle weakness & memory & mental problems. I asked him what were the odds that Cytoxan would help them. He said that in his experience the fatigue & muscle weakness would not be helped at all, the pain maybe a little. The likely improvement would be in memory, but possibly not enough to get me back to work. Then he said that we should make sure the disease was still active, as my symptoms could be from scar tissue, that is, damage already done. In that case, the Cytoxan wouldn't do any good. I don't want to take Cytoxan, with all its risks, if there is no active disease. One option he suggested was to go off the MTX & see if my symptoms got worse (would take a couple of months). If so, then he would assume the sarc was active & encourage the Cytoxan or at least resuming the MTX.

I think I'm going to stop the MTX (after discussing it all with Larry my local neuro on Monday) & see what happens. If I get worse, or develop new symptoms, then I'll take the Cytoxan. He also suggested resuming the MTX since the Cytoxan can take 6-12 months to kick in. But then after 2 years, the risk of bladder cancer goes up. By then, I guess I could go for the Remicade, or maybe there will be another treatment by then.

Last night & today I have been kind of depressed, thinking that there is a good chance that this (my current condition) is as good as it's gonna get. And when I can't take the MTX or the Cytoxan, and when I develop a reaction to the Remicade or it's not working anymore, I'll just have to sit back & wait for Ol' Sarky to pop up somewhere new. Maybe I'm too pessimistic.

Oh, here's an interesting sidenote. I knew that there had been some interest in Thalidomide, but didn't know about any success. Dr. Bob said that in a small trial they did, it tended to relieve the pain of peripheral neuropathy, but not the numbness. So that was an option for the pain in my feet, which is really getting debilitating. Downside, besides jumping through many large hoops for approval, it costs several hundred $ per month. I didn't even ask about side effects. Right now I don't think I'd be interested. If these feet get much worse I might give it another look. Anybody else tried that?

Well, I know there is more, but I'm really tired, so I'm hitting the sack.

P.S. I got another break this week. I've had trouble with an upper molar for a couple of years, hurting off & on. It has a large filling in it, the tooth had cracked a year or so ago & had to be repaired. It started hurting really bad a couple of weeks ago. My dentist thought it needed a root canal, so he sent me to an endodontist, who had done 2 other root canals on me. BTW, I don't think they are bad at all. I was thinking that I would just get the tooth pulled rather than get a root canal because I don't have dental insurance or money for a root canal. The endodontist happens to be the husband of a doctor friend of mine. I worked with her over 25 years ago as a nurse when she was an OB resident. I explained that I didn't have insurance anymore. I'd like to save the tooth because I had already lost the molar behind it, but I'd have to work out a long payment plan for a root canal. He told me he wasn't going to charge me! Nothing! When I said that I felt like I should give him something, he smiled and said, "A cookie!" So I'm making a big choc. chip cookie to take in next week when he finishes the root canal. It sure pays to have friends in grody places.

Ramblin' Rose

Moderator

Find flowers, candy and directions to a romantic restaurant with Windows Live Local --

The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Rose

That's what the original doc called an exam, sticking

me with a hat pin.I've been getting some feeling back

in my back since I started the Cytoxan treatment but

the bad news is the feeling is pain quite often. Sigh

My legs feel like your using a cheese grater on them

most of the time if I run my hand up my leg. I tried

rubbing my hand along my shoulder & arm & got the same

results. My question is do I have to mail myself $200

for the self exam? LOL

grannylunatic@...

__________________________________________________

[Guest guest]

Rose

That's what the original doc called an exam, sticking

me with a hat pin.I've been getting some feeling back

in my back since I started the Cytoxan treatment but

the bad news is the feeling is pain quite often. Sigh

My legs feel like your using a cheese grater on them

most of the time if I run my hand up my leg. I tried

rubbing my hand along my shoulder & arm & got the same

results. My question is do I have to mail myself $200

for the self exam? LOL

grannylunatic@...

__________________________________________________

[Guest guest]

Who is Dr. Bob that you are talking about? I saw the Return to Camp

Baughman in your subject line. I saw a Dr. Baughman in Cincinnati,

Ohio. Could this be the same doc?

Bonnie

[Guest guest]

,

I think your self-exam is worth more than that! Just don't tell us

everywhere you touched yourself. Hee Hee.

Terri G,.

>

>

> Rose

> That's what the original doc called an exam, sticking

> me with a hat pin.I've been getting some feeling back

> in my back since I started the Cytoxan treatment but

> the bad news is the feeling is pain quite often. Sigh

> My legs feel like your using a cheese grater on them

> most of the time if I run my hand up my leg. I tried

> rubbing my hand along my shoulder & arm & got the same

> results. My question is do I have to mail myself $200

> for the self exam? LOL

>

> grannylunatic@...

>

>

>

> __________________________________________________

>

[Guest guest]

Yep, that's him. Last year Kim in Kuwait & I had appts. there on the same afternoon. I had a friend with me & she had her son. We had tote bags, pillows, food, etc.; pretty much taking up a corner of the waiting area. That's when I started calling it Camp Baughman.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Return to Camp BaughmanDate: Tue, 14 Feb 2006 05:00:08 -0000Who is Dr. Bob that you are talking about? I saw the Return to Camp Baughman in your subject line. I saw a Dr. Baughman in Cincinnati, Ohio. Could this be the same doc?Bonnie~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi Rose,

The neuro I saw in Denver did a lot of poking with a sharp pin all

over, I can also lay on a heating pad, and feel intense heat one side,

and little heat the other side, where I really notice it, is when I had

a sinus infection on the left side, so I took a nap laying on the

heating pad with the left side of my face, when I woke up, I thought my

heating pad, quit working, my face felt cold. I turned over and as soon

as the other side of my face hit the heating pad, I notice that it was

still very hot, and my face was very red, so we need to be careful

too.

Marla

Marla, I was borderline diabetic back when I was

still on the Pred, but I've been fine since. I check myself with my

mom's glucometer occasionally & I just had a Hg A1C, which tells

you what your average blood sugar has been for the past 3 months. It

was normal. My circulation to my feet is good too.

I did just discover a weird thing though. I was

checking myself with a pin (you know, the sharp/dull test) to see if

the neuropathy was moving up my legs. It was hard to tell because I

kept getting electric shocks when I would touch the skin. So I decided

to try it somewhere that I knew would be sharp. I poked my belly &

it felt pretty dull. I kept going around the side until "ouch!" Then

I started from the middle & went around to the other side. Same

thing. So I moved farther down my stomach & then higher up onto my

chest. It was like a line down my body from sharp to dull! I couldn't

reach around to the back far enough to check it. When I saw my neuro

today I asked him about it, and he said it's part of the neuropathy.

Have any of you heard of this? Now is the time for all good

sarcoidians to grab their pins & poke themselves, in the name of

science!

Ramblin' Rose

Moderator

From: marla

Reply-To: Neurosarcoidosis

To: Neurosarcoidosis

Subject: Re: Return to Camp Baughman

Date: Sat, 11 Feb 2006 13:20:57 -0800

Rose,

It's so wonderful to hear there are still kind generous people in the

world. I'm happy to hear that.

Do you have Diabetes? Just wondering, if the feet could have two

things going on with the neuropathy?

Your in my prayers,

Marla

Well, I went back to see Dr. Bob Thursday. (Elodia, I forgot

all about trying to stop & see you until we were almost back to

. I'm sorry.)

The friends who drove me down insisted on driving their van,

so it was more comfortable than taking my car. Plus, they wouldn't let

me pay for any gas! What angels. It's about 5 hours round-trip. They

even brought all kinds of snacks & sandwiches.

Anyway, the visit was productive in that it's helped me make

a decision about the next move. You might remember that we were

considering Cytoxan, or Remicade in the unlikely case that Medicare

approved it. So I wrote down the 4 worst symptoms for me: neuropathic

pain in feet, fatigue, muscle weakness & memory & mental

problems. I asked him what were the odds that Cytoxan would help

them. He said that in his experience the fatigue & muscle weakness

would not be helped at all, the pain maybe a little. The likely

improvement would be in memory, but possibly not enough to get me back

to work. Then he said that we should make sure the disease was still

active, as my symptoms could be from scar tissue, that is, damage

already done. In that case, the Cytoxan wouldn't do any good. I don't

want to take Cytoxan, with all its risks, if there is no active

disease. One option he suggested was to go off the MTX & see if my

symptoms got worse (would take a couple of months). If so, then he

would assume the sarc was active & encourage the Cytoxan or at

least resuming the MTX.

I think I'm going to stop the MTX (after discussing it all

with Larry my local neuro on Monday) & see what happens. If I get

worse, or develop new symptoms, then I'll take the Cytoxan. He also

suggested resuming the MTX since the Cytoxan can take 6-12 months to

kick in. But then after 2 years, the risk of bladder cancer goes up.

By then, I guess I could go for the Remicade, or maybe there will be

another treatment by then.

Last night & today I have been kind of depressed,

thinking that there is a good chance that this (my current condition)

is as good as it's gonna get. And when I can't take the MTX or the

Cytoxan, and when I develop a reaction to the Remicade or it's not

working anymore, I'll just have to sit back & wait for Ol' Sarky to

pop up somewhere new. Maybe I'm too pessimistic.

Oh, here's an interesting sidenote. I knew that there had

been some interest in Thalidomide, but didn't know about any success.

Dr. Bob said that in a small trial they did, it tended to relieve the

pain of peripheral neuropathy, but not the numbness. So that was an

option for the pain in my feet, which is really getting debilitating.

Downside, besides jumping through many large hoops for approval, it

costs several hundred $ per month. I didn't even ask about side

effects. Right now I don't think I'd be interested. If these feet

get much worse I might give it another look. Anybody else tried that?

Well, I know there is more, but I'm really tired, so I'm

hitting the sack.

P.S. I got another break this week. I've had trouble with

an upper molar for a couple of years, hurting off & on. It has a

large filling in it, the tooth had cracked a year or so ago & had

to be repaired. It started hurting really bad a couple of weeks ago.

My dentist thought it needed a root canal, so he sent me to an

endodontist, who had done 2 other root canals on me. BTW, I don't

think they are bad at all. I was thinking that I would just get the

tooth pulled rather than get a root canal because I don't have dental

insurance or money for a root canal. The endodontist happens to be the

husband of a doctor friend of mine. I worked with her over 25 years

ago as a nurse when she was an OB resident. I explained that I didn't

have insurance anymore. I'd like to save the tooth because I had

already lost the molar behind it, but I'd have to work out a long

payment plan for a root canal. He told me he wasn't going to charge

me! Nothing! When I said that I felt like I should give him

something, he smiled and said, "A cookie!" So I'm making a big choc.

chip cookie to take in next week when he finishes the root canal. It

sure pays to have friends in grody places.

Ramblin' Rose

Moderator

Find flowers, candy

and directions to a romantic restaurant with Windows Live Local

--

The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- Has been cancelled for now.

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

>

> Bonnie

>

> Now this is really strange. This just showed up in my

> mailbox. Yahoo blackhole? I know where Oakley is.

> Years ago I lived there on Duck Creek with the ex

> boyfriend. A friend of mine lives over in Norwood.

> It's nice to know not everyone is far away.

>

> grannylunatic@...

>

>

I wondered if you got my reply. I am originally from

Hamilton/Fairfield but moved here 8 yrs ago to be closer to my job

that I no longer have. Thinking about moving to Florida. Can't

stand the family lies and drama anymore. Will never understand why

family do things and then lie and blame somebody else, just had a

good cry because of ex-sister-in-law lying (she's a pro), and her

daughter believed her.

Anyway, where are you in Kentucky?

Bonnie

>

> __________________________________________________

>

[Guest guest]

>

> Bonnie

>

> Now this is really strange. This just showed up in my

> mailbox. Yahoo blackhole? I know where Oakley is.

> Years ago I lived there on Duck Creek with the ex

> boyfriend. A friend of mine lives over in Norwood.

> It's nice to know not everyone is far away.

>

> grannylunatic@...

>

>

I wondered if you got my reply. I am originally from

Hamilton/Fairfield but moved here 8 yrs ago to be closer to my job

that I no longer have. Thinking about moving to Florida. Can't

stand the family lies and drama anymore. Will never understand why

family do things and then lie and blame somebody else, just had a

good cry because of ex-sister-in-law lying (she's a pro), and her

daughter believed her.

Anyway, where are you in Kentucky?

Bonnie

>

> __________________________________________________

>

[Guest guest]

>

> Bonnie

>

> Now this is really strange. This just showed up in my

> mailbox. Yahoo blackhole? I know where Oakley is.

> Years ago I lived there on Duck Creek with the ex

> boyfriend. A friend of mine lives over in Norwood.

> It's nice to know not everyone is far away.

>

> grannylunatic@...

>

>

I wondered if you got my reply. I am originally from

Hamilton/Fairfield but moved here 8 yrs ago to be closer to my job

that I no longer have. Thinking about moving to Florida. Can't

stand the family lies and drama anymore. Will never understand why

family do things and then lie and blame somebody else, just had a

good cry because of ex-sister-in-law lying (she's a pro), and her

daughter believed her.

Anyway, where are you in Kentucky?

Bonnie

>

> __________________________________________________

>