RE: Neuropathy - Pain - IVIg - Does anything help?

[Guest guest]

Hey, Mad Mystik, glad to see you back! But sorry that it's because you are feeling so much worse. I think one of the members did have the IVIg treatments, but don't remember much about it. Hopefully, you will get some replies to that question.

Is the pain in your hands & feet from neuropathy or from the arthritis? If you are having trouble getting around your home, you should be eligible for a power chair. Do you have another doctor that you can ask, maybe your primary care doc? Where do you live, ? Are you on Medicare or do you have private insurance? Has your doctor considered Remicade? Several group members have had very good results with Remicade. It's tricky getting it covered by insurance or Medicare, but it's been done & we have a number of messages describing how to get it covered, even how to get it for free if you can't afford it. That really sounds like the best option for you, as pain has become so intractable. In the Links section you can find quite a bit of info. You mentioned it being so difficult to type; let me know if you can't do this extra research at this time & I'll try to gather some of the info together for you.

Again, I am truly sorry that you are so discouraged & in so much pain. We have restarted the chat room if you are interested & feel up to it. We have two different chat experiences available--one is a general Q & A, support, whatever is needed at that time; the other is faith-based, for those who want to be free to discuss religious issues without causing offense to others. The chat info is at the bottom of this message, along with Links & Archives. Just let me know if you need some help accessing the info.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Neuropathy - Pain - IVIg - Does anything help?Date: Sun, 09 Jul 2006 03:37:39 -0000

Hi, I hate to start off in such a negative way, but I'm looking for some information that might help me to think positive again.I just got approved for IVIg treatments and was wondering/hoping that someone might have had some positive results from this treatment.I'm at a point that I can barely make it through the day.I know I'm not the only one that has a lot of pain, but I don't know what to do anymore to help me get past it anymore.I've been going to a pain mgt. center for 7-8 or so years and am on several Opoid medications. I know they help, but anymore they just don't help anywhere near enough. If I take anymore I might as well not be alive because I'll just be in a drug stupor and kind of sleeping all day.I'm hoping that this new treatment might help some, but I can't find any real information on it.Has anyone here had it? Did it help? Is there anything else that might help?I've been to so many Doctors that I don't trust or believe any of them anymore.My hands/wrists are almost as bad as my feet now. Typing is a torture. I can barely walk because of the pain and the Athritis. It's in every joint I can think of and it seems to put even more pressure on the nerves....My Neurologist tells me to go to a Therapist when I asked him to sign a paper that might help me get a power wheelchair and I don't think I can walk much longer.The pain is so bad at night that I don't sleep much anymore and I know that makes things worse.Well,After that great Intro., does anybody have any answers? I hope so, because I just don't know what to do anymore. I've had to fight over and over to make it this far, but I just don't know how much fight I've got left. I'm not thinking about suicide or anything, but I do wonder if it would be any kind of releif.Please let me know of anything you think might help, even though I've probably tried it already. Thanks for anything you can think of and any info on IVIg.frankE, the MadMystyk

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[Guest guest]

Hi again.

The pain is from both, the Arthritis and the Neuropathies.

I do have Medicare, even Part " D " with extra help now. I am finaly so

broke that it helps. I guess that's good?!

I should be eligable for the power chair, I have no idea why the

Neurologist,( who just did the 1st part of an EMG and went on & on how

bad the nerves are and that it showed that it was caused by

N.Sarcoidosis) has taken such na firm stance on me not getting a Power

Wheelchair. My Primary Care Doc belongs to the same group as the

Neuro. and everything is tied in by computer, ( laptops etc...).

I'm going to try, but I don't think I'll get anywhere.

I just started reading the replies. Thanks to everyone for trying to

help and the encouragement etc..

frankE - themadmystyk

[Guest guest]

Hi again.

The pain is from both, the Arthritis and the Neuropathies.

I do have Medicare, even Part " D " with extra help now. I am finaly so

broke that it helps. I guess that's good?!

I should be eligable for the power chair, I have no idea why the

Neurologist,( who just did the 1st part of an EMG and went on & on how

bad the nerves are and that it showed that it was caused by

N.Sarcoidosis) has taken such na firm stance on me not getting a Power

Wheelchair. My Primary Care Doc belongs to the same group as the

Neuro. and everything is tied in by computer, ( laptops etc...).

I'm going to try, but I don't think I'll get anywhere.

I just started reading the replies. Thanks to everyone for trying to

help and the encouragement etc..

frankE - themadmystyk

[Guest guest]

The Doc said it had a very good chance on working, even reversing

the nerve damage!

In fact he was so positive that I have a hard time believing all of

it!

I appreciate any bit of info I can get. At least I know that the

information isn't fabricated,

Thanks for the prayers, my beliefs might be quite a ways away from

the norm, but I sure do appreciate every kind of prayer I can get!

frankE- the madmystyk

-- In Neurosarcoidosis , " Marla " wrote:

>

> E,

>

> I'm sorry to hear you are in so much pain. I worked with a doc

that did

> IVIg for a depressed immune system, different then Sarcoid, he was

always

> getting sick, which is a lot since he was always seeing sick

people, he

> finally had to stop seeing sick people and now only does well

check ups etc.

> But I don't believe he was in pain? It helps him keep his immune

system in

> better working condition; I believe he gets this treatment like

every 2-3

> months. I'm not sure how it would work with Sarcoid, did the

doctor tell

> you how it would work? Sorry I'm not much help.

>

> I'll be praying for you,

>

> Marla

>

>

>

>

>

> _____

>

> From: Neurosarcoidosis

> [mailto:Neurosarcoidosis ] On Behalf Of themadmystyk

> Sent: Saturday, July 08, 2006 8:38 PM

> To: Neurosarcoidosis

> Subject: Neuropathy - Pain - IVIg - Does

anything help?

>

>

>

> Hi, I hate to start off in such a negative way, but I'm looking

for

> some information that might help me to think positive again.

> I just got approved for IVIg treatments and was wondering/hoping

that

> someone might have had some positive results from this treatment.

> I'm at a point that I can barely make it through the day.

> I know I'm not the only one that has a lot of pain, but I don't

know

> what to do anymore to help me get past it anymore.

> I've been going to a pain mgt. center for 7-8 or so years and am

on

> several Opoid medications. I know they help, but anymore they just

> don't help anywhere near enough. If I take anymore I might as well

> not be alive because I'll just be in a drug stupor and kind of

> sleeping all day.

> I'm hoping that this new treatment might help some, but I can't

find

> any real information on it.

> Has anyone here had it? Did it help? Is there anything else that

> might help?

> I've been to so many Doctors that I don't trust or believe any of

> them anymore.

> My hands/wrists are almost as bad as my feet now. Typing is a

> torture.

> I can barely walk because of the pain and the Athritis. It's in

every

> joint I can think of and it seems to put even more pressure on the

> nerves....

> My Neurologist tells me to go to a Therapist when I asked him to

sign

> a paper that might help me get a power wheelchair and I don't

think I

> can walk much longer.

> The pain is so bad at night that I don't sleep much anymore and I

> know that makes things worse.

> Well,

> After that great Intro., does anybody have any answers? I hope so,

> because I just don't know what to do anymore. I've had to fight

over

> and over to make it this far, but I just don't know how much fight

> I've got left. I'm not thinking about suicide or anything, but I

do

> wonder if it would be any kind of releif.

> Please let me know of anything you think might help, even though

> I've probably tried it already.

> Thanks for anything you can think of and any info on IVIg.

> frankE, the MadMystyk

>

[Guest guest]

Hi again ! I don't know what I did, but I was getting near the end

of a post and " POOF " it was gone!

I don't have enough energy right nor to try again.

I hope to get an answer about the IVIg Monday or Tuesday!

Wish me luck.

I'll let everyone know how it works out!!!!!!!!!!!!!!!!!!

>

> Hi, I hate to start off in such a negative way, but I'm looking

for

> some information that might help me to think positive again.

> I just got approved for IVIg treatments and was wondering/hoping

that

> someone might have had some positive results from this treatment.

> I'm at a point that I can barely make it through the day.

> I know I'm not the only one that has a lot of pain, but I don't

know

> what to do anymore to help me get past it anymore.

> I've been going to a pain mgt. center for 7-8 or so years and am

on

> several Opoid medications. I know they help, but anymore they just

> don't help anywhere near enough. If I take anymore I might as well

> not be alive because I'll just be in a drug stupor and kind of

> sleeping all day.

> I'm hoping that this new treatment might help some, but I can't

find

> any real information on it.

> Has anyone here had it? Did it help? Is there anything else that

> might help?

> I've been to so many Doctors that I don't trust or believe any of

> them anymore.

> My hands/wrists are almost as bad as my feet now. Typing is a

> torture.

> I can barely walk because of the pain and the Athritis. It's in

every

> joint I can think of and it seems to put even more pressure on the

> nerves....

> My Neurologist tells me to go to a Therapist when I asked him to

sign

> a paper that might help me get a power wheelchair and I don't

think I

> can walk much longer.

> The pain is so bad at night that I don't sleep much anymore and I

> know that makes things worse.

> Well,

> After that great Intro., does anybody have any answers? I hope so,

> because I just don't know what to do anymore. I've had to fight

over

> and over to make it this far, but I just don't know how much fight

> I've got left. I'm not thinking about suicide or anything, but I

do

> wonder if it would be any kind of releif.

> Please let me know of anything you think might help, even though

> I've probably tried it already.

> Thanks for anything you can think of and any info on IVIg.

> frankE, the MadMystyk

>