Re: Tracie and everyone else.

April 26, 2006

This fisaco with this rhemy doc has just like I might as well throw my hands up in the air and why bother about anything. But I quess I need to press on and just be determined to have something like this resolve.

, isn't the old saying-- only the strong survive. I so understand the desire to throw your hands up in the air and say to hell with it all.

Every person on this list has wanted to do that-- at least once in awhile. (Once a week for some of us.) But we can't. We are worth fighting for!

In this e-mail that I wrote I also said I'am having this virbration of my nerves happening simultaneously (as least I think I said that, memory loss?) in both in my legs from the toes up to about half way up to my knees. At times this is going on in my arms too. I can "see" how this neuro stuff has progresses. This is worst now than 3 months ago. At that time it was probility worse then than a year previously to that, etc. These symptoms of this nerve damage is more noticeable when I sit down on a chair, sofa. When I'am out walking I don't notice this at all. Like I stated before some time ago, walking helps in that time frame doing that verses sitting down.

, when you get these leg cramps and the vibrations in your legs, do you try eating a banana or taking some calcium tablets. (Even TUMS helps). Alot of the leg jerking is from not having enough potassium in your system. So by adding potassium rich foods, and by adding calcium/magnesium supplements to your diet, you may find that this problem gets a bit better.

My other thought is that if you have Restless Leg Syndrome-- then Sinemet works pretty well. It might be worth requesting a sleep apnea test from your PCP. Do you snore? This is a major sign of SA.

In the meantime--eat that banana.

Then again sometimes it doesn't help much or not at all. These last few weeks I've

been having these muscle cramps that come on by themselves. Like this morning, I was lying in bed on my side before I got up this morning from sleeping and this muscle cramp came on my lower leg. Oh I think I can mentally "see" in my mind how this progresses to where a person has to use a cane to walk. Then progresses to where you need a "walker" to move around. Then progresses to where you need a wheelchair or a motorise scooter to get around in.

, I know this is scary. I had the same thought today when I went grocery shopping, and saw an elderly woman in her scooter navigating the parking lot.

You know-- for a moment, I thought "Man, I do hope I don't have to do that until I'm her age."

Then I realized that I don't want to put my energy into thinking those thoughts-- and giving the wrong message to my body. So I rethought that-- and said to myself, "I'm sure glad that I can still walk."

Take care, and I'm glad you are going to "not give up!"

Tracie

April 27, 2006

Hey, . It's good to hear from you. I wish you had better news to share. At least we can understand the issues. Just keep plugging away at those doctors, until they get so tired of hearing from you that they will order tests, whatever.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Tracie and everyone else.Date: Tue, 25 Apr 2006 16:07:26 -0700 (PDT)

Hello,

Tuesday afternoon here. Tracie, you may very well forgot about what drugs I've taken. This is understandable considering the quantity of different people writing & reading this notes/posts. Anyway I've never HAVE nor am I NOW taking any oral (pill form) of anti-inflammatary immunosuppressive drugs such as Prednisone. I have taken this nasal decongested nasal spray that may have Prednisone or another Corticosteriod ingredient in this nasal spray, but I say again that in a pill form, no.

There's no other Rhemy doc at this V.A. clinic I go to. For me to see a different one, I'll have to request my primary care doctor, Dr. Vander Haar (an old Fart doc himself) and he would have to put in a referal to see a rhemy doc at Ann Arbor V.A. Hospital down there. See I told this so called rhemy doc last Tuesday when I was at the Grand Rapids V.A. clinic all about this pain, and thing is he won't do JACK DILLY SQUAT!!!!!!!!!!!!!!!!!! I wanted to have this MRI done on my legs and have a printed medical paperwork about this so I have some basis to give to a disability attorney. I'am inclined if I went to one of these attorneys that want some data/report that I have a detoriation of my body that is the impression I'am progressing to disability. What so SIMPLE IDEA is just have an MRI done on my legs. I should have asked this fruitcake rhemy doc, "Is the reason you don't wish that I have a MRI done on my legs is because this MRI cost comming out of your paycheck???????

"SAME OL", "SAME OL" V.A. health care that I have gotten here and there through the V.A. This is do nothing, take their sweet old time, don't wish to "MAKE WAVES" in getting to the bottom of how extensive this sarcoid is affecting me. "Throw in the Towel Sydrome" somewhat is back in that wrarped brain of mine.

I noticed today I'am having vibration of my nerves in both my legs and both of my arms as well now. This wasn't going hardly at all in my arms, but now it is. Sometimes it's left leg, then right leg, then left leg again, then right leg again, back and forth. Sometimes I've noticed this virbration going simultaneously in both legs. Polyneuropathy going on now???? I know Polyneuropathy is where this nerve disfunction like this virbration is happening in multiple of areas of the body all at the same time

April 27, 2006

Hey, . It's good to hear from you. I wish you had better news to share. At least we can understand the issues. Just keep plugging away at those doctors, until they get so tired of hearing from you that they will order tests, whatever.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Tracie and everyone else.Date: Tue, 25 Apr 2006 16:07:26 -0700 (PDT)

Hello,

Tuesday afternoon here. Tracie, you may very well forgot about what drugs I've taken. This is understandable considering the quantity of different people writing & reading this notes/posts. Anyway I've never HAVE nor am I NOW taking any oral (pill form) of anti-inflammatary immunosuppressive drugs such as Prednisone. I have taken this nasal decongested nasal spray that may have Prednisone or another Corticosteriod ingredient in this nasal spray, but I say again that in a pill form, no.

There's no other Rhemy doc at this V.A. clinic I go to. For me to see a different one, I'll have to request my primary care doctor, Dr. Vander Haar (an old Fart doc himself) and he would have to put in a referal to see a rhemy doc at Ann Arbor V.A. Hospital down there. See I told this so called rhemy doc last Tuesday when I was at the Grand Rapids V.A. clinic all about this pain, and thing is he won't do JACK DILLY SQUAT!!!!!!!!!!!!!!!!!! I wanted to have this MRI done on my legs and have a printed medical paperwork about this so I have some basis to give to a disability attorney. I'am inclined if I went to one of these attorneys that want some data/report that I have a detoriation of my body that is the impression I'am progressing to disability. What so SIMPLE IDEA is just have an MRI done on my legs. I should have asked this fruitcake rhemy doc, "Is the reason you don't wish that I have a MRI done on my legs is because this MRI cost comming out of your paycheck???????

"SAME OL", "SAME OL" V.A. health care that I have gotten here and there through the V.A. This is do nothing, take their sweet old time, don't wish to "MAKE WAVES" in getting to the bottom of how extensive this sarcoid is affecting me. "Throw in the Towel Sydrome" somewhat is back in that wrarped brain of mine.

I noticed today I'am having vibration of my nerves in both my legs and both of my arms as well now. This wasn't going hardly at all in my arms, but now it is. Sometimes it's left leg, then right leg, then left leg again, then right leg again, back and forth. Sometimes I've noticed this virbration going simultaneously in both legs. Polyneuropathy going on now???? I know Polyneuropathy is where this nerve disfunction like this virbration is happening in multiple of areas of the body all at the same time

April 27, 2006

Hey, . It's good to hear from you. I wish you had better news to share. At least we can understand the issues. Just keep plugging away at those doctors, until they get so tired of hearing from you that they will order tests, whatever.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Tracie and everyone else.Date: Tue, 25 Apr 2006 16:07:26 -0700 (PDT)

Hello,

Tuesday afternoon here. Tracie, you may very well forgot about what drugs I've taken. This is understandable considering the quantity of different people writing & reading this notes/posts. Anyway I've never HAVE nor am I NOW taking any oral (pill form) of anti-inflammatary immunosuppressive drugs such as Prednisone. I have taken this nasal decongested nasal spray that may have Prednisone or another Corticosteriod ingredient in this nasal spray, but I say again that in a pill form, no.

There's no other Rhemy doc at this V.A. clinic I go to. For me to see a different one, I'll have to request my primary care doctor, Dr. Vander Haar (an old Fart doc himself) and he would have to put in a referal to see a rhemy doc at Ann Arbor V.A. Hospital down there. See I told this so called rhemy doc last Tuesday when I was at the Grand Rapids V.A. clinic all about this pain, and thing is he won't do JACK DILLY SQUAT!!!!!!!!!!!!!!!!!! I wanted to have this MRI done on my legs and have a printed medical paperwork about this so I have some basis to give to a disability attorney. I'am inclined if I went to one of these attorneys that want some data/report that I have a detoriation of my body that is the impression I'am progressing to disability. What so SIMPLE IDEA is just have an MRI done on my legs. I should have asked this fruitcake rhemy doc, "Is the reason you don't wish that I have a MRI done on my legs is because this MRI cost comming out of your paycheck???????

"SAME OL", "SAME OL" V.A. health care that I have gotten here and there through the V.A. This is do nothing, take their sweet old time, don't wish to "MAKE WAVES" in getting to the bottom of how extensive this sarcoid is affecting me. "Throw in the Towel Sydrome" somewhat is back in that wrarped brain of mine.

I noticed today I'am having vibration of my nerves in both my legs and both of my arms as well now. This wasn't going hardly at all in my arms, but now it is. Sometimes it's left leg, then right leg, then left leg again, then right leg again, back and forth. Sometimes I've noticed this virbration going simultaneously in both legs. Polyneuropathy going on now???? I know Polyneuropathy is where this nerve disfunction like this virbration is happening in multiple of areas of the body all at the same time

April 28, 2006

,

You are so silly. You make me smile....and I really needed that all

ready this morning. Have a great day.

Terri

> > In a message dated 4/25/06 8:12:33 PM Pacific Daylight Time,

garyjwoolard@ writes:

> >

> > See I told this so called rhemy doc last Tuesday when I was at the

Grand Rapids V.A. clinic all about this pain, and thing is he won't do

JACK DILLY SQUAT!!!!!!!!!!!!!!!!!! I

> >

> > ,

> > I so totally understand your anger!

> > It's time you get in his face and demand that he do something. Can

you write a letter to the hospital Commander? How about your VA office--

can one of their representatives get in his face--and get you the test.

> >

> > , your disability attorney can set up these appts and tests for

you-- let him do it--that what he gets his " cut " for doing. That's

another choice.

> >

> > Tracie

> >

> > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > 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

> >

April 29, 2006

, I am not being a smart alec, but I used to work Rescue so naturally I read and read trying to figure things out. You do know that when you have sarcoidosis you need to stay out of the light. The granulomas love sunlight or basically any form of light and vitamin D, and will have a field day growing. Your eyes are exceptionally susceptible to this, the recommendation is for us to wear NOIR sunglasses any time we are outside, and to not be outside in the sun without being covered up. Have you ever noticed that when you are in the sun for any length of time you feel bad. They say that's our little critters cutting up because of the light. (And no this is not some half baked idea - I've read quite a bit on a site called sarcinfo.com., and I noticed that if I'm in the sun long, I get really ill) Hope it helps///ConnieRose

wrote: Hey, . It's good to hear from you. I wish you had better news to share. At least we can understand the issues. Just keep plugging away at those doctors, until they get so tired of hearing from you that they will order tests, whatever. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Tracie and everyone else.Date: Tue, 25 Apr 2006 16:07:26 -0700 (PDT) Hello, Tuesday afternoon here. Tracie, you may very well forgot about what drugs I've taken. This is understandable considering the quantity of different people writing & reading this notes/posts. Anyway I've never HAVE nor am I NOW taking any oral (pill form) of anti-inflammatary immunosuppressive drugs such as Prednisone. I have taken this nasal decongested nasal spray that may have Prednisone or another Corticosteriod ingredient in this nasal spray, but I say again that in a pill form, no. There's no other Rhemy doc at this V.A. clinic I go to. For me to see a different one, I'll have to

request my primary care doctor, Dr. Vander Haar (an old Fart doc himself) and he would have to put in a referal to see a rhemy doc at Ann Arbor V.A. Hospital down there. See I told this so called rhemy doc last Tuesday when I was at the Grand Rapids V.A. clinic all about this pain, and thing is he won't do JACK DILLY SQUAT!!!!!!!!!!!!!!!!!! I wanted to have this MRI done on my legs and have a printed medical paperwork about this so I have some basis to give to a disability attorney. I'am inclined if I went to one of these attorneys that want some data/report that I have a detoriation of my body that is the impression I'am progressing to disability. What so SIMPLE IDEA is just have an MRI done on my legs. I should have asked this fruitcake rhemy doc, "Is the reason you don't wish that I have a MRI done on my legs is because this MRI cost comming out of your paycheck??????? "SAME OL", "SAME OL" V.A.

health care that I have gotten here and there through the V.A. This is do nothing, take their sweet old time, don't wish to "MAKE WAVES" in getting to the bottom of how extensive this sarcoid is affecting me. "Throw in the Towel Sydrome" somewhat is back in that wrarped brain of mine. I noticed today I'am having vibration of my nerves in both my legs and both of my arms as well now. This wasn't going hardly at all in my arms, but now it is. Sometimes it's left leg, then right leg, then left leg again, then right leg again, back and forth. Sometimes I've noticed this virbration going simultaneously in both legs. Polyneuropathy going on now???? I know Polyneuropathy is where this nerve disfunction like this virbration is happening in multiple of areas of the body all at the same time. I did our federal taxes and filed married jointly. Kathy's gross income for last year including unemployment

compension was only around $7,800. Reba our daughter had $14,000 gross income. If Reba wasn't living with us and helping on bills, we very well be homeless living elsewhere than this apartment we live in. Our entire refund from our federal taxes more than likely will go to pay off my Vetrean's Admistration medical debt (around $600.) I go down to Ann Arbor V.A. Hospital to see the eye doctor next Tuesay. I need my prescription sunglasses repaired ASAP because the right lens came out of the frame. My eyes are sensitive to the bright sunshine. Oh, Kathy has a lump on the back of her neck. This may be a fat cell lump. She went to her primary care doctor this morning. Y'ALL WISHED THAT YOU HAD THAT SNOWSTORM SNOWFALL AMOUNT THAT HAPPENED IN SOUTH DAKOTA WHICH WAS UP TO AROUND 30 INCHES DON'T YOU????????? Ha! Ha! Ha! Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~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

April 29, 2006

, I am not being a smart alec, but I used to work Rescue so naturally I read and read trying to figure things out. You do know that when you have sarcoidosis you need to stay out of the light. The granulomas love sunlight or basically any form of light and vitamin D, and will have a field day growing. Your eyes are exceptionally susceptible to this, the recommendation is for us to wear NOIR sunglasses any time we are outside, and to not be outside in the sun without being covered up. Have you ever noticed that when you are in the sun for any length of time you feel bad. They say that's our little critters cutting up because of the light. (And no this is not some half baked idea - I've read quite a bit on a site called sarcinfo.com., and I noticed that if I'm in the sun long, I get really ill) Hope it helps///ConnieRose

wrote: Hey, . It's good to hear from you. I wish you had better news to share. At least we can understand the issues. Just keep plugging away at those doctors, until they get so tired of hearing from you that they will order tests, whatever. Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Tracie and everyone else.Date: Tue, 25 Apr 2006 16:07:26 -0700 (PDT) Hello, Tuesday afternoon here. Tracie, you may very well forgot about what drugs I've taken. This is understandable considering the quantity of different people writing & reading this notes/posts. Anyway I've never HAVE nor am I NOW taking any oral (pill form) of anti-inflammatary immunosuppressive drugs such as Prednisone. I have taken this nasal decongested nasal spray that may have Prednisone or another Corticosteriod ingredient in this nasal spray, but I say again that in a pill form, no. There's no other Rhemy doc at this V.A. clinic I go to. For me to see a different one, I'll have to

request my primary care doctor, Dr. Vander Haar (an old Fart doc himself) and he would have to put in a referal to see a rhemy doc at Ann Arbor V.A. Hospital down there. See I told this so called rhemy doc last Tuesday when I was at the Grand Rapids V.A. clinic all about this pain, and thing is he won't do JACK DILLY SQUAT!!!!!!!!!!!!!!!!!! I wanted to have this MRI done on my legs and have a printed medical paperwork about this so I have some basis to give to a disability attorney. I'am inclined if I went to one of these attorneys that want some data/report that I have a detoriation of my body that is the impression I'am progressing to disability. What so SIMPLE IDEA is just have an MRI done on my legs. I should have asked this fruitcake rhemy doc, "Is the reason you don't wish that I have a MRI done on my legs is because this MRI cost comming out of your paycheck??????? "SAME OL", "SAME OL" V.A.

health care that I have gotten here and there through the V.A. This is do nothing, take their sweet old time, don't wish to "MAKE WAVES" in getting to the bottom of how extensive this sarcoid is affecting me. "Throw in the Towel Sydrome" somewhat is back in that wrarped brain of mine. I noticed today I'am having vibration of my nerves in both my legs and both of my arms as well now. This wasn't going hardly at all in my arms, but now it is. Sometimes it's left leg, then right leg, then left leg again, then right leg again, back and forth. Sometimes I've noticed this virbration going simultaneously in both legs. Polyneuropathy going on now???? I know Polyneuropathy is where this nerve disfunction like this virbration is happening in multiple of areas of the body all at the same time. I did our federal taxes and filed married jointly. Kathy's gross income for last year including unemployment

compension was only around $7,800. Reba our daughter had $14,000 gross income. If Reba wasn't living with us and helping on bills, we very well be homeless living elsewhere than this apartment we live in. Our entire refund from our federal taxes more than likely will go to pay off my Vetrean's Admistration medical debt (around $600.) I go down to Ann Arbor V.A. Hospital to see the eye doctor next Tuesay. I need my prescription sunglasses repaired ASAP because the right lens came out of the frame. My eyes are sensitive to the bright sunshine. Oh, Kathy has a lump on the back of her neck. This may be a fat cell lump. She went to her primary care doctor this morning. Y'ALL WISHED THAT YOU HAD THAT SNOWSTORM SNOWFALL AMOUNT THAT HAPPENED IN SOUTH DAKOTA WHICH WAS UP TO AROUND 30 INCHES DON'T YOU????????? Ha! Ha! Ha! Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. ~~~~ *** ~~~ *** ~~~ *** ~~~~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

April 29, 2006

,

I got in my 4 runner the other day and found a cantaloupe. How about

that?

Terri G.

>

> Tracie

> Thanks for reminding me. I think I have a banana in my

> purse from 2 days ago. LOL

>

> grannylunatic@...

>

> __________________________________________________

>

April 29, 2006

Connie,

I want to thank you for putting this info on the site; I really get sick

if I get hot and then I get this phantom itching. I have no spots or

hives or anything and then nausea and headache and on and on...

Terri G.

> Hey, . It's good to hear from you. I wish you had better news to

share. At least we can understand the issues. Just keep plugging away at

those doctors, until they get so tired of hearing from you that they

will order tests, whatever.

>

> Ramblin' Rose

> Moderator

>

> ---------------------------------

> From: GARY WOOLARD garyjwoolard@...

> Reply-To: Neurosarcoidosis

> To: Neurosarcoidosis

> Subject: Tracie and everyone else.

> Date: Tue, 25 Apr 2006 16:07:26 -0700 (PDT)

>

> Hello,

>

> Tuesday afternoon here. Tracie, you may very well forgot about what

drugs I've taken. This is understandable considering the quantity of

different people writing & reading this notes/posts. Anyway I've never

HAVE nor am I NOW taking any oral (pill form) of anti-inflammatary

immunosuppressive drugs such as Prednisone. I have taken this nasal

decongested nasal spray that may have Prednisone or another

Corticosteriod ingredient in this nasal spray, but I say again that in a

pill form, no.

>

> There's no other Rhemy doc at this V.A. clinic I go to. For me to see

a different one, I'll have to request my primary care doctor, Dr. Vander

Haar (an old Fart doc himself) and he would have to put in a referal to

see a rhemy doc at Ann Arbor V.A. Hospital down there. See I told this

so called rhemy doc last Tuesday when I was at the Grand Rapids V.A.

clinic all about this pain, and thing is he won't do JACK DILLY

SQUAT!!!!!!!!!!!!!!!!!! I wanted to have this MRI done on my legs and

have a printed medical paperwork about this so I have some basis to give

to a disability attorney. I'am inclined if I went to one of these

attorneys that want some data/report that I have a detoriation of my

body that is the impression I'am progressing to disability. What so

SIMPLE IDEA is just have an MRI done on my legs. I should have asked

this fruitcake rhemy doc, " Is the reason you don't wish that I have a

MRI done on my legs is because this MRI cost comming out of your

paycheck???????

>

> " SAME OL " , " SAME OL " V.A. health care that I have gotten here and

there through the V.A. This is do nothing, take their sweet old time,

don't wish to " MAKE WAVES " in getting to the bottom of how extensive

this sarcoid is affecting me. " Throw in the Towel Sydrome " somewhat is

back in that wrarped brain of mine.

>

> I noticed today I'am having vibration of my nerves in both my legs and

both of my arms as well now. This wasn't going hardly at all in my arms,

but now it is. Sometimes it's left leg, then right leg, then left leg

again, then right leg again, back and forth. Sometimes I've noticed this

virbration going simultaneously in both legs. Polyneuropathy going on

now???? I know Polyneuropathy is where this nerve disfunction like this

virbration is happening in multiple of areas of the body all at the same

time.

>

> I did our federal taxes and filed married jointly. Kathy's gross

income for last year including unemployment compension was only around

$7,800. Reba our daughter had $14,000 gross income. If Reba wasn't

living with us and helping on bills, we very well be homeless living

elsewhere than this apartment we live in. Our entire refund from our

federal taxes more than likely will go to pay off my Vetrean's

Admistration medical debt (around $600.)

>

> I go down to Ann Arbor V.A. Hospital to see the eye doctor next

Tuesay. I need my prescription sunglasses repaired ASAP because the

right lens came out of the frame. My eyes are sensitive to the bright

sunshine. Oh, Kathy has a lump on the back of her neck. This may be a

fat cell lump. She went to her primary care doctor this morning.

>

> Y'ALL WISHED THAT YOU HAD THAT SNOWSTORM SNOWFALL AMOUNT THAT HAPPENED

IN SOUTH DAKOTA WHICH WAS UP TO AROUND 30 INCHES DON'T YOU????????? Ha!

Ha! Ha!

>

> ---------------------------------

> Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using

Yahoo! Messenger with Voice.

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> 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

>

April 29, 2006