numbness and pain

[Guest guest]

Marla, numbness is usually a sign for me that a flare-up is on the

way. If not controlled (steroids are what work for me) then paralysis

of something is on the way. Pain is a constant. It's the hardest part

for me. Coping with pain every day. I am loath to take pills and tend

to put up with it, rather than be doped up. I am so sorry you are

having to go through this. It is very hard when every day activities

are made so difficult by disease. Hugs to you.

[Guest guest]

Thank

you, I still have the numbness but my pills methotrexate and Plaquanil have

only been increase for about a week, the doc said he didn’t think I needed

steroids, so will wait and see. He told me I could take an extra Lyceria

(I think that’s how it spelled?) but when I first started them they revved

me up just the opposite of what they said they would do, and the other day I took

two to close together and they did the same thing, so I’m hesitant to

take an extra one, so I like you just put up with the pain, I’m starting

to figure out my limitations and have found that if I take the strain off my

leg the pain is less, is kind of strange the way I have lost mobility in

my leg, but I’ll figure it out, things are getting better, thanks for the

Hugs.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidp

Sent: Tuesday, March 13, 2007 7:08

PM

To: Neurosarcoidosis

Subject:

numbness and pain

Marla, numbness is usually a sign for me that a

flare-up is on the

way. If not controlled (steroids are what work for me) then paralysis

of something is on the way. Pain is a constant. It's the hardest part

for me. Coping with pain every day. I am loath to take pills and tend

to put up with it, rather than be doped up. I am so sorry you are

having to go through this. It is very hard when every day activities

are made so difficult by disease. Hugs to you.

[Guest guest]

Marla, I have been away for awhile so I am not up on what has been happening to you. I have numbness up to my knees and in other places also, but the real problems come from my lower extremities. I suffered so much pain. I probably don't have to tell you. I take Lyrica and I have a Duragesic patch. That helps considerably but does not completely relieve the pain. I also take steroids. Did they tell you that the Plaquanil and methotrexate would help to get rid of the neuropathy or relieve the pain caused by the neuropathy. I have just been wondering lately how it affects my balance and moblility. I used to think that I could get by with the numbness and pain but now I think in another year I won't be able to walk at all. If there is something to help that I would sure take it. Every day I struggle just to get around the house. I only go out for Dr appointments or things I can't avoid. I can only stand about three minutes and my back is hurting so bad I must

sit down. Nothing controls that pain. They are doing Stem cell transplantation in Chicago. One would have to have really good insurance to qualify but I am thinking about looking into it. My husband is afraid that if they wipe out my immune system in order to give me a new one that I will die. I have a friend who has Leukemia and they just irradicated his immune system and did a bone marrow transplant and he said he was not sick through the whole thing. I just wonder if I had this would I just wake up one day completely cured with no neuropathy, no pain, no jerking, no memory loss. Wouldn't that be great?Barb Marla Bramer wrote: Thank you, I still have the numbness but my pills methotrexate and Plaquanil have only been increase for about a week, the doc said he didn’t think I needed steroids, so will wait and see. He told me I could take an extra Lyceria (I think that’s how it spelled?) but when I first started them they revved me up just the opposite of what they said they would do, and the other day I took two to close together and they did the same thing, so I’m hesitant to take an extra one, so I like you just put up with the pain, I’m starting to figure out my limitations and have found that if I take

the strain off my leg the pain is less, is kind of strange the way I have lost mobility in my leg, but I’ll figure it out, things are getting better, thanks for the Hugs. Marla Bramer "Faith sees the invisible, believes the incredible and receives the impossible" From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidpSent: Tuesday, March 13, 2007 7:08 PMTo: Neurosarcoidosis Subject:

numbness and pain Marla, numbness is usually a sign for me that a flare-up is on theway. If not controlled (steroids are what work for me) then paralysisof something is on the way. Pain is a constant. It's the hardest partfor me. Coping with pain every day. I am loath to take pills and tendto put up with it, rather than be doped up. I am so sorry you arehaving to go through this. It is very hard when every day activitiesare made so difficult by disease. Hugs to you.

Sucker-punch spam with award-winning protection. Try the free Yahoo! Mail Beta.

[Guest guest]

Hi Barb,

Yes it

would be neat to wake up a new person, but I’m not sure that would work

for us, as the Sarcoid is everywhere not just in our bones or blood, but let me

know what you find out on it, should be interesting. I’m sorry you are

having so much trouble; my problems are really small compared to so many here.

Sure I have limitations in movement now, but it doesn’t really slow me

down much, I still keep going. My pain is so much better since it’s

warmed up around here; the cold was brutal on my pain. I take the lyceria 3

times a day, and the Neuro told me if I have more pain, I would be better

taking an extra lyceria then taking a vicodin which does nothing but make me

feel nauseated, I haven’t tried that yet, mostly because the last time I took

my doses too close together it made me hyper, they say caution this may cause drowsiness,

but with me it’s just the opposite, so the night I took them too close I was

up for hours, then dragging the next day.

After I started

the methotrexate and I was already on the plaquanil I was able to come off the steroids.

And what really made me better, was a laying of the hands healing, it restored

my energy to this day, I don’t have the fatigue I use to have, and it cut

the pain by about 75 % and yes some of the pain has come back, but not that

much, and yes the disease is still progressing but God is still blessing me

with the energy to do what I need to do and that is a lot, so I am very

blessed, I will pray for blessing upon you Barb, take care, Marla

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of Barb

Sent: Saturday, March 17, 2007

1:08 AM

To: Neurosarcoidosis

Subject: RE:

numbness and pain

Marla,

I have been away for awhile so I am not up on what has been happening

to you. I have numbness up to my knees and in other places also, but the real

problems come from my lower extremities. I suffered so much pain. I probably

don't have to tell you. I take Lyrica and I have a Duragesic patch. That helps

considerably but does not completely relieve the pain. I also take steroids.

Did they tell you that the Plaquanil and methotrexate would help to get rid of

the neuropathy or relieve the pain caused by the neuropathy. I have just been

wondering lately how it affects my balance and moblility. I used to think that

I could get by with the numbness and pain but now I think in another year I

won't be able to walk at all. If there is something to help that I would sure

take it. Every day I struggle just to get around the house. I only go out for

Dr appointments or things I can't avoid. I can only stand about three minutes

and my back is hurting so bad I must sit down. Nothing controls that pain.

They are doing Stem cell transplantation in Chicago. One would have to have really good

insurance to qualify but I am thinking about looking into it. My husband

is afraid that if they wipe out my immune system in order to give me a new one

that I will die. I have a friend who has Leukemia and they

just irradicated his immune system and did a bone marrow transplant and he

said he was not sick through the whole thing.

I just wonder if I had this would I just wake up one day completely

cured with no neuropathy, no pain, no jerking, no memory loss. Wouldn't that be

great?

Barb

Marla Bramer

<mebramer (AT) gmail (DOT) com> wrote:

Thank

you, I still have the numbness but my pills methotrexate and Plaquanil have

only been increase for about a week, the doc said he didn’t think I

needed steroids, so will wait and see. He told me I could take an extra

Lyceria (I think that’s how it spelled?) but when I first started them

they revved me up just the opposite of what they said they would do, and the

other day I took two to close together and they did the same thing, so

I’m hesitant to take an extra one, so I like you just put up with the pain,

I’m starting to figure out my limitations and have found that if I take

the strain off my leg the pain is less, is kind of strange the way I have lost

mobility in my leg, but I’ll figure it out, things are getting

better, thanks for the Hugs.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis

[mailto:Neurosarcoidosis ]

On Behalf Of wendy_cidp

Sent: Tuesday, March 13, 2007 7:08

PM

To: Neurosarcoidosis

Subject:

numbness and pain

Marla, numbness is usually a sign for me that a flare-up is on the

way. If not controlled (steroids are what work for me) then paralysis

of something is on the way. Pain is a constant. It's the hardest part

for me. Coping with pain every day. I am loath to take pills and tend

to put up with it, rather than be doped up. I am so sorry you are

having to go through this. It is very hard when every day activities

are made so difficult by disease. Hugs to you.

Sucker-punch

spam with award-winning protection.

Try the free

Yahoo! Mail Beta.

[Guest guest]

>I agree, that numbness will be the start of a flare-up and the PAIN I

also avoid pain killers i donot want anymore meds in my system. And I

refuse presc. pain killers. I am in a flare up now and i also find a

chickenpox type of rash. does anyone else experience this? Anne

> Marla, numbness is usually a sign for me that a flare-up is on the

> way. If not controlled (steroids are what work for me) then paralysis

> of something is on the way. Pain is a constant. It's the hardest part

> for me. Coping with pain every day. I am loath to take pills and tend

> to put up with it, rather than be doped up. I am so sorry you are

> having to go through this. It is very hard when every day activities

> are made so difficult by disease. Hugs to you.

>

[Guest guest]

,

I get numbness too...really sucks huh?

Terri G/

> >I agree, that numbness will be the start of a flare-up and the PAIN I

> also avoid pain killers i donot want anymore meds in my system. And I

> refuse presc. pain killers. I am in a flare up now and i also find a

> chickenpox type of rash. does anyone else experience this? Anne

> > Marla, numbness is usually a sign for me that a flare-up is on the

> > way. If not controlled (steroids are what work for me) then

paralysis

> > of something is on the way. Pain is a constant. It's the hardest

part

> > for me. Coping with pain every day. I am loath to take pills and

tend

> > to put up with it, rather than be doped up. I am so sorry you are

> > having to go through this. It is very hard when every day activities

> > are made so difficult by disease. Hugs to you.

> >

>

[Guest guest]

I agree, that numbness will be the start of a flare-up and the PAIN I

also avoid pain killers i donot want anymore meds in my system. And I

refuse presc. pain killers. I am in a flare up now and i also find a

chickenpox type of rash. does anyone else experience this? Anne

Anne,

This is a symptom of shingles, the adult form of chicken pox. Get in and see the MD- there are meds that can help with the nerve pain that goes along with shingles.

Tracie

************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

[Guest guest]

I am

finding the Lyrica is amazing for the nerve pain control, and my neurologist

told me I could take an extra one for extra pain, so that I wouldn’t need

the vicodin anymore since it didn’t really help that much, he said

narcotics do very little for nerve pain. So I take my Lyrica, and the

other day I did take an extra one for extra pain, it took longer to kick in

which he said it would, but when it did it really helped.

Marla

Bramer

" Faith

sees the invisible, believes the incredible and receives the impossible "

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat@...

Sent: Thursday, March 22, 2007

4:07 PM

To: Neurosarcoidosis

Subject: Re:

Re: numbness and pain

In a message dated 3/21/07

7:50:27 AM Pacific Standard Time, annabanana60546 (AT) yahoo (DOT) com writes:

I agree, that numbness

will be the start of a flare-up and the PAIN I

also avoid pain killers i donot want anymore meds in my system. And I

refuse presc. pain killers. I am in a flare up now and i also find a

chickenpox type of rash. does

anyone else experience this? Anne

Anne,

This is a symptom of shingles, the adult form of chicken pox. Get in and see

the MD- there

are meds that can help with the nerve pain that goes along with shingles.

Tracie

**************************************

AOL now offers free email to everyone. Find out more about what's free from AOL

at http://www.aol.com.

[Guest guest]

Marla, I don't know what dose of Lyrica you are on. I was originally started on 150mg twice a day, but I was too sleepy during the day, so I just took the 150mg at bedtime. My primary care doc gave me some samples of 75mg & when my feet are really bothering me or I know the next day I won't be able to keep them up much, like driving to Indy & back, I take a 75mg along with the 150. It works well & doesn't make me too sleepy the next day. I tried taking 300 at night, but it was too much. So you might ask one of your docs if they have any 75mg samples.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: <Neurosarcoidosis >Subject: RE: Re: numbness and painDate: Sun, 25 Mar 2007 18:05:20 -0600

I am finding the Lyrica is amazing for the nerve pain control, and my neurologist told me I could take an extra one for extra pain, so that I wouldn’t need the vicodin anymore since it didn’t really help that much, he said narcotics do very little for nerve pain. So I take my Lyrica, and the other day I did take an extra one for extra pain, it took longer to kick in which he said it would, but when it did it really helped.

Marla Bramer

"Faith sees the invisible, believes the incredible and receives the impossible"

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of tiodaat (AT) aol (DOT) comSent: Thursday, March 22, 2007 4:07 PMTo: Neurosarcoidosis Subject: Re: Re: numbness and pain

In a message dated 3/21/07 7:50:27 AM Pacific Standard Time, annabanana60546 (AT) yahoo (DOT) com writes:

I agree, that numbness will be the start of a flare-up and the PAIN I also avoid pain killers i donot want anymore meds in my system. And I refuse presc. pain killers. I am in a flare up now and i also find a chickenpox type of rash. does anyone else experience this? Anne

Anne,This is a symptom of shingles, the adult form of chicken pox. Get in and see the MD- there are meds that can help with the nerve pain that goes along with shingles.Tracie**************************************AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

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