Re: My newest Dr visit and important questions about nerves

September 18, 2001

Hi ,

I think you probably saw a reasonably good rheumatologist, as it sounds as

if he is at least somewhat knowledgable about implants.

Now I would like for you to question him about why he would put you on a

drug (Celebrex) which already has a " Class Action " Lawsuit working against

it, the same as Vioxx. Both will tear your guts apart, and if you have even

a slight problem with Esophageal Reflux, these drugs exacerbate that

problem. 'Don't want to scare you, yet these are facts he should know.

It's relatively easy to have a good neurologist determine if you have

demylenation of the nerves with a brain MRI, and/or nerve condution studies

of your body limbs -- one side at a time! If you do have demylenation of

the nerves, there are things that may help re-mylinate the nerves, and

relieve the 'nerve pain'! I have MS, yet no one who doesn't live with me

would normally never know. However, I cannot rely on 'natural supplement'

to handle this problem, although I take A LOT of them.

I hope this is somewhat helpful information. I am NOT a medical

professional.

Blessings,

Martha M.

NSIF

----- Original Message -----

From: <cjheer@...>

< >

Sent: Monday, September 17, 2001 7:26 PM

Subject: My newest Dr visit and important questions about

nerves

> Saw a rheumatologist in Pocatello today, which is an hour from Idaho

> Falls, he seemed nice enough and said I was probably smart to have my

> implants out. He told me he thinks I have nerve damage causeing my

> pain in my hands and feet more than likely that is the reason it

> feels so achy right on my heel whihc is just bone and not joint or

> muscle, and he told me he thinks I should see a neurologist again for

> another work up, another thing whihc kind of pissed me off was he

> said if it wasn't for my positive ANA titers he would think maybe it

> was all phsychological, can you believe it, oh so frustraitng. He did

> say however that he believes me and the ana proves I have something

> going on and he wants me to try to take a new medication I am sure

> everyone has heard of called celebrex and to get off the vicodin

> cause it isn't helping it is just masking the pain, I know I am

> basicaly addicted to the vicodin which is not good, but hell I am so

> tired of hurting that I am willing to be addicted, so frustrating, I

> am going to give the celebrex a shot and will let you all know of how

> it works, but as we know, most meds and me don't mix well so keep

> your fingers crossed. I want to know how many of us on this site have

> hand and feet pain? THis has got to go with the theory that the body

> attacks the nerve sheath because it is similair in make up to the

> implants, it explains it so simply, why isn't anyone getting it? I

> mean it explains the brain stuff and the pain, arg frusttration to

> the max, I know my spelling is off I am just angry about it all right

> now. I am tired of freaking foot pain, it is nerves I am convinced

> and not lupus, lupus people swell up and stuff I just ache ache ache,

> and yes la I think soaking is great and massage is the best my

> husband rubs my feet and it feels so good, it helps so much but only

> for so long then it comes back again. I think working out is the best

> medicine of all, afterwards at least for a little while it really

> helps, then I admit it makes me tired, like today I had to take a

> long nap after I did my spinning class, but I feel ok head wise, my

> head is still tons better than with the implants

>

> What supplements besides NADH and Vit B 12 etc are good for nerves? I

> need to find out cause I am starting to become more and more

> convinced I suffer nerve damage. I still believe it can be reversed.

>

> Thanks for being here

>

September 18, 2001

Wonderful news geeze so what is a good pain med I am sick of this

crap and I think the lortab works so why stop it? My doc in Ca

thought it was fine to take, these people here are more conservative.

I have already had a nerve conduction study and an MRI the only thing

I have not had is an emg but all the other tests were negative and

that was when I still had implants and was much sicker than I am now,

so what to do?

He recommended plaquenil as well, I am leary of that medication

because of the side effects of hair falling out, and also it is a

drug that works but they don't know why? I would like to know why

something works before I take it, and not be a freaking giunea pig

like I was with implants.

THanks for the info Martha, I do not have any esophageal probs yet ha

ha ha, I know not funny,

Shit what now? This is ridiculous, I think the lortab were better

than the celebrex anyhow

@y..., " MARTHA-NSIF " <MAM-NSIF@P...> wrote:

> Hi ,

>

> I think you probably saw a reasonably good rheumatologist, as it

sounds as

> if he is at least somewhat knowledgable about implants.

>

> Now I would like for you to question him about why he would put you

on a

> drug (Celebrex) which already has a " Class Action " Lawsuit working

against

> it, the same as Vioxx. Both will tear your guts apart, and if you

have even

> a slight problem with Esophageal Reflux, these drugs exacerbate that

> problem. 'Don't want to scare you, yet these are facts he should

know.

>

> It's relatively easy to have a good neurologist determine if you

have

> demylenation of the nerves with a brain MRI, and/or nerve condution

studies

> of your body limbs -- one side at a time! If you do have

demylenation of

> the nerves, there are things that may help re-mylinate the nerves,

and

> relieve the 'nerve pain'! I have MS, yet no one who doesn't live

with me

> would normally never know. However, I cannot rely on 'natural

supplement'

> to handle this problem, although I take A LOT of them.

>

> I hope this is somewhat helpful information. I am NOT a medical

> professional.

>

> Blessings,

> Martha M.

> NSIF

>

> ----- Original Message -----

> From: <cjheer@i...>

> < @y...>

> Sent: Monday, September 17, 2001 7:26 PM

> Subject: My newest Dr visit and important questions

about

> nerves

>

> > Saw a rheumatologist in Pocatello today, which is an hour from

Idaho

> > Falls, he seemed nice enough and said I was probably smart to

have my

> > implants out. He told me he thinks I have nerve damage causeing my

> > pain in my hands and feet more than likely that is the reason it

> > feels so achy right on my heel whihc is just bone and not joint or

> > muscle, and he told me he thinks I should see a neurologist again

for

> > another work up, another thing whihc kind of pissed me off was he

> > said if it wasn't for my positive ANA titers he would think maybe

it

> > was all phsychological, can you believe it, oh so frustraitng. He

did

> > say however that he believes me and the ana proves I have

something

> > going on and he wants me to try to take a new medication I am sure

> > everyone has heard of called celebrex and to get off the vicodin

> > cause it isn't helping it is just masking the pain, I know I am

> > basicaly addicted to the vicodin which is not good, but hell I am

so

> > tired of hurting that I am willing to be addicted, so

frustrating, I

> > am going to give the celebrex a shot and will let you all know of

how

> > it works, but as we know, most meds and me don't mix well so keep

> > your fingers crossed. I want to know how many of us on this site

have

> > hand and feet pain? THis has got to go with the theory that the

body

> > attacks the nerve sheath because it is similair in make up to the

> > implants, it explains it so simply, why isn't anyone getting it? I

> > mean it explains the brain stuff and the pain, arg frusttration to

> > the max, I know my spelling is off I am just angry about it all

right

> > now. I am tired of freaking foot pain, it is nerves I am convinced

> > and not lupus, lupus people swell up and stuff I just ache ache

ache,

> > and yes la I think soaking is great and massage is the

best my

> > husband rubs my feet and it feels so good, it helps so much but

only

> > for so long then it comes back again. I think working out is the

best

> > medicine of all, afterwards at least for a little while it really

> > helps, then I admit it makes me tired, like today I had to take a

> > long nap after I did my spinning class, but I feel ok head wise,

my

> > head is still tons better than with the implants

> >

> > What supplements besides NADH and Vit B 12 etc are good for

nerves? I

> > need to find out cause I am starting to become more and more

> > convinced I suffer nerve damage. I still believe it can be

reversed.

> >

> > Thanks for being here

> >

September 19, 2001

,

Hey!! I just now finished reading your email about your

visit to your new rheumy today. How frustrating to have

him tell you what he did about vicodin (lortab), and

then to tell you that if it weren't for your ANA titers,

it might be psychological!!! I have found that doctors

differ greatly in the way they treat pts and in their

school of thought. From Denver to SC to Seattle, every

doc has been different, and none of them has agreed on

anything. And they all have very good (and debatable)

reasons for treating pts the way they do. Different

ways of looking at things, I guess.

Anyway, you need to find a doc that you are comfortable

with and won't dread going to every time. It's

important that you feel you can tell him how you feel

and that he will believe you. It's important that you

trust him and feel comfortable with the knowledge he has

and how he uses it. Maybe he's not the perfect match

for you. But then again, it doesn't sound like you have

much of a big choice out there.

Celebrex and Vioxx are the relatively new class of pain

meds called 2 inhibitors. They are both NSAIDS, and

Martha is right--they can both tear up your stomach.

However, it's not as frequent nor as likely as it is

with a med like ASA (aspirin) or ibuprofen. And

Celebrex can be taken once a day, which makes it easier

to remember as well as easier on the stomach. They are

very effective drugs for certain people, and I have

taken care of hundreds of pts who have been on one or

the other and have had great results.

On the other hand, both take several days to start

working, so if you just started taking it, you probably

won't notice any relief for several days. And I had

heard a report just before I left Denver that both were

being linked to heart attacks. Whether this is true or

not, I don't know. I heard it second hand from someone

who said they heard that on the radio. How they could

cause MI's is strange, esp since they can thin the

blood, and that prevents MI's. So, don't quote me on

that. I have also taken care of people who have not

been helped by either drug. So, again, it is something

that is going to vary from person to person.

Side effects from both are relatively uncommon. You

have to watch out for bleeding, such as bleeding gums,

blood in the stool, nosebleeds, etc. They can both

elevate your liver enzymes, so your rheumy should

monitor those. Otherwise, those are pretty much it.

Vioxx seems to have more potential side effects than

Celebrex, but it is approved to prescribe to pts who

have painful periods. Both can cause fluid retention.

I have been on both. I did get very good pain relief

from Celebrex, but not from Vioxx. I also had no side

effects from Celebrex, but with Vioxx, I began to retain

water like crazy and swelled up horribly. Needless to

say, I stopped the Vioxx about 3 wks after I started

it. I was on Celebrex for almost 2 yrs.

I am not aware of the lawsuits against these drugs, so I

can't provide you with any info there. But you

ultimately need to make the decision as to what you want

to do. If you don't notice any pain relief within 7

days, then it may not be for you. But maybe Vioxx will

be. So, do some thinking, and while you're thinking,

I'd suggest continue taking the Celebrex and see what

happens.

Also, have you ever taken any of the other rx NSAIDS,

like indocin, Relafen, Cataflam, or Daypro? If not you

might want to think about those. I was on indocin for a

long time after my heart surgery, and it was

incredible. I did retain some fluid, but the pain

relief I got from it was worth it. And one more thing I

have to say. You probably are not addicted to vicodin.

Not unless you take it more frequently than told and/or

take it only to relax and not for the pain. You are

however, probably tolerant. BIG difference between

tolerance and addiction, and don't let anyone tell you

otherwise!! And I feel that if vicodin works for you,

why change it? If it's not broken, don't fix it!!

e