Re: Tracie and everyone else.

[Guest guest]

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

[Guest guest]

,

At least you are not fried hard with a broken yolk!

Terri G. > > > > 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 > >

[Guest guest]

,

At least you are not fried hard with a broken yolk!

Terri G. > > > > 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 > >

[Guest guest]

,

At least you are not fried hard with a broken yolk!

Terri G. > > > > 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 > >

[Guest guest]

,

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

> >

> >

[Guest guest]

,

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

> >

> >

[Guest guest]

, did you know that VA Hospital in Augusta, GA has a physician that specializes in sarcoidosis. My ex used to go there, he may be to far for you to go see him, but he may be a way to get the doctor your seeing now to get off his posterior and do what he is supposed to do. Conniemosaicgirl1 wrote: , At least you are not fried hard with a broken yolk! Terri G. > > > > 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 > >

[Guest guest]

, did you know that VA Hospital in Augusta, GA has a physician that specializes in sarcoidosis. My ex used to go there, he may be to far for you to go see him, but he may be a way to get the doctor your seeing now to get off his posterior and do what he is supposed to do. Conniemosaicgirl1 wrote: , At least you are not fried hard with a broken yolk! Terri G. > > > > 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 > >

[Guest guest]

Connie

I can't forget my sunblock or I start to burn in 15

minutes even in the car.

grannylunatic@...

__________________________________________________

[Guest guest]

Terri

My sister takes my aunt to the grocery & has forgotten

milk for a couple of days. Phew stinky!

grannylunatic@...

__________________________________________________

[Guest guest]

Rose,

It is my SUV (gas sucker); it is made by Toyota. The only reason I have

it is because a family member sold it to us and we can afford the

payment. Right now it smells like a cantaloupe that sat out in the sun

for two hours but it is getting better.

Terri G.

[Guest guest]

Glad it helped some///Conniemosaicgirl1 wrote: Connie,I want to thank you for putting this info on the site; I really get sickif I get hot and then I get this phantom itching. I have no spots orhives 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 toshare. At least we can understand the issues. Just keep plugging away atthose doctors, until they get so tired of hearing from you that theywill 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 whatdrugs I've taken. This is understandable considering the quantity ofdifferent people writing & reading this notes/posts. Anyway I've neverHAVE nor am I NOW taking any oral (pill form) of anti-inflammataryimmunosuppressive drugs such as Prednisone. I have taken this nasaldecongested nasal spray that may have Prednisone or anotherCorticosteriod ingredient in this nasal spray, but I say again that in apill form, no.>> There's no other Rhemy doc at this V.A. clinic I go to. For me to seea different one, I'll have to request my primary care doctor, Dr. VanderHaar (an old Fart doc himself) and he would have to put in a referal tosee a rhemy doc at Ann Arbor V.A.

Hospital down there. See I told thisso 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 DILLYSQUAT!!!!!!!!!!!!!!!!!! I wanted to have this MRI done on my legs andhave a printed medical paperwork about this so I have some basis to giveto a disability attorney. I'am inclined if I went to one of theseattorneys that want some data/report that I have a detoriation of mybody that is the impression I'am progressing to disability. What soSIMPLE IDEA is just have an MRI done on my legs. I should have askedthis fruitcake rhemy doc, "Is the reason you don't wish that I have aMRI done on my legs is because this MRI cost comming out of yourpaycheck???????>> "SAME OL", "SAME OL" V.A. health care that I have gotten here andthere 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

extensivethis sarcoid is affecting me. "Throw in the Towel Sydrome" somewhat isback in that wrarped brain of mine.>> I noticed today I'am having vibration of my nerves in both my legs andboth 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 legagain, then right leg again, back and forth. Sometimes I've noticed thisvirbration going simultaneously in both legs. Polyneuropathy going onnow???? I know Polyneuropathy is where this nerve disfunction like thisvirbration is happening in multiple of areas of the body all at the sametime.>> I did our federal taxes and filed married jointly. Kathy's grossincome for last year including unemployment compension was only around$7,800. Reba our daughter had $14,000 gross income. If Reba wasn'tliving with us and helping on bills, we very well be homeless livingelsewhere than this

apartment we live in. Our entire refund from ourfederal taxes more than likely will go to pay off my Vetrean'sAdmistration medical debt (around $600.)>> I go down to Ann Arbor V.A. Hospital to see the eye doctor nextTuesay. I need my prescription sunglasses repaired ASAP because theright lens came out of the frame. My eyes are sensitive to the brightsunshine. Oh, Kathy has a lump on the back of her neck. This may be afat cell lump. She went to her primary care doctor this morning.>> Y'ALL WISHED THAT YOU HAD THAT SNOWSTORM SNOWFALL AMOUNT THAT HAPPENEDIN 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 usingYahoo! 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>>

[Guest guest]

Have you tried putting a box of baking soda in it and closing the windows overnight. Might help...just a thought///Conniemosaicgirl1 wrote: Rose,It is my SUV (gas sucker); it is made by Toyota. The only reason I haveit is because a family member sold it to us and we can afford thepayment. Right now it smells like a cantaloupe that sat out in the sunfor two hours but it is getting better.Terri G.

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[Guest guest]

Connie,

Thanks for the tip; it is gone now. I did go buy another cantaloupe but

made sure it made it out of the car. I use a melon baller to make the

balls and then freeze them. Yummy and it helps you cool down too.

Terri g

> Rose,

>

> It is my SUV (gas sucker); it is made by Toyota. The only reason I

have

> it is because a family member sold it to us and we can afford the

> payment. Right now it smells like a cantaloupe that sat out in the sun

> for two hours but it is getting better.

>

> Terri G.

>

>

>

>

>

>

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

> 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]

Your welcome, by the way I was told that cantaloupe is also an excellent source of potassium.....great to know when pred is causing muscle cramps///Conniemosaicgirl1 wrote: Connie,Thanks for the tip; it is gone now. I did go buy another cantaloupe butmade sure it made it out of the car. I use a melon baller to make theballs and then freeze them. Yummy and it helps you cool down too.Terri g> Rose,>> It is my SUV (gas sucker); it is made by Toyota. The only reason

Ihave> it is because a family member sold it to us and we can afford the> payment. Right now it smells like a cantaloupe that sat out in the sun> for two hours but it is getting better.>> Terri G.>>>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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]

Your welcome, by the way I was told that cantaloupe is also an excellent source of potassium.....great to know when pred is causing muscle cramps///Conniemosaicgirl1 wrote: Connie,Thanks for the tip; it is gone now. I did go buy another cantaloupe butmade sure it made it out of the car. I use a melon baller to make theballs and then freeze them. Yummy and it helps you cool down too.Terri g> Rose,>> It is my SUV (gas sucker); it is made by Toyota. The only reason

Ihave> it is because a family member sold it to us and we can afford the> payment. Right now it smells like a cantaloupe that sat out in the sun> for two hours but it is getting better.>> Terri G.>>>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> 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>>