Re: Tracie

March 19, 2006

Tracie,

I'm sorry you have more things to deal with, as if Sarc isn't enough.

I will pray that you will be feeling better soon. Take care of

yourself. know you too are loved.

Marla

So Rose,

I understand that I'm not eating well, and that I'm stuck in the

weeds. Have I gone belly-up yet? I sure feel like it. lol!

Hi gang,

I'm having some problems over and above my normal stuff. I am checking

my emails, but haven't had the energy to answer but just a few. Bare

with me on this--I'll be back as soon as I can.

BTW--we have 6 inches of snow, more expected next week. It actually

hit us with a couple of feet- in one short afternoon--it was absolutely

beautiful! Rained the next day and melted most of it, but hey-- my

tulips are blooming--and it's grand!

Know you are loved,

Tracie

NS Co-owner/moderator

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

July 19, 2006

ROFL Tracie, she was the funnest granny anyone could have ever had. She would have loved your remark. Once she told us her boyfriend was coming on TV in a bit so we anxiously awaited to see her boyfriend.. and low and behold it was "ELVIS" I never cared for Elvis after that, we loved out Grandpa, and if Elvis was our Granny's boyfriend, we wanted no part of him.. lol When my Grandpa died in 1970, we were all crush, but my poor Granny mourned herself to death, she died 10 years later but she was never happy anymore.. that's the kind of "Love" that I'm looking for.. I just simply won't compromise that.. so I'll just stay single, an old maid if you wish.. lol

-- Re:

people called her "gusty,That wasn't because of her name-- it was because of the flatulence.

July 21, 2006

Our body needs to send

this acid out to the muscles, but we don't clear it as we should. I've

found that a Tums or Rolaids before I get on the treadmill can make a huge

difference. (This was a tip one of the MD's I worked for shared with us.

He found that by taking Tums before he went running stopped the muscle

pain.--hmm, cheap fix!)

Tracie,

Thanks

for the advice on exercising, I have trouble staying on schedule with the

treadmill, I do it, then have pain for a day or two so put off getting on it

again. I will try the Tums before doing it tomorrow and see if that helps.

You should

teach, you know so much, about Sarcoid, yes, but just in general. I teach

at the community college level, you have so much knowledge to share. You should

think about it, if your health is up to it, what I like about it, is I only do

a few hours at a time, and like right now, two days a week, I can stand or sit,

usually a little of both. You have so much to share. You are

amazing, and I thank you for sharing all this information with us.

And thank

you for the update on Kim, I’m praying she will continue to get better,

so she can join us here again, I miss her.

Have a

great day,

Marla

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

Sent: Thursday, July 20, 2006 4:06

PM

To: Neurosarcoidosis

Subject: Re:

Why Pain?

In a message dated 7/20/06

5:21:47 AM Pacific Daylight Time, children8_2000@... writes:

I SEE A PAIN CLINIC

CONVERSATION GOING ON. I TOO HAVE A QUESTION AND IT COULD BE THE SAME QUESTION.

I AM GOING NEXT WEEK FOR THE FIRST TIME, AND

ITS

NOT REALLY THE PAIN MEDS THAT I AM AFTER, BUT THE REASON FOR MY PAIN. I HAVE

NOT REALLY FIGURED OUT WHY WE HAVE PAIN WITH SARC & NEURO SARC, BUT I DO

UNDERSTAND THE FIBRO THING. I ALSO HAVE A LOT

OF PAIN WITH JUST SNEEZING IN MY LEFT LOWER LUNG.

Lynne,

so many times the pain of sarcoidosis is the inflammation caused by the

granulomas. If we have granulomas in our blood stream (the blood cells

show it as ACE levels) then it's called " vasculitis. "

This means inflammation of the blood vessels.

If the inflammation is in the joints, ligaments, muscles--then most of us have

been told we have " fibromyalgia. " Myalgia means muscle

pain. Fibro means muscle fibers or ligaments. This comes on as the

pain in your muscles. Many times when they do the " muscle biopsies "

they find that those wonderful " trigger points " are actually

sarcoidosis granulomas. Think of it like having a knot in a spot on your

shoulder. No amount of massaging or manipulation gets rid of the

knot. That is because we've developed scar tissue in this spot-- and it

hardens, makes the muscle fiber hard so that it doesn't " give " when

it needs to move, so we end up with a tear in the muscles around it, which then

needs repair, so our body sends the white cells to " heal " that spot,

next come the blood cells that clean out the white cells (these are the TNF-a

and TNF-b cells) and because our immune system doesn't get the signal to stop

producing these cells- we end up with a build-up of cells and proteins- which

harden, and the problem gets worse.

If this is happening to our nerve ends-- say the fingers, hands, toes, feet--

then we develop " neuropathy " . With nerve ends, (the nerves are

covered by a protective sheath) the sheath begins to deteriorate- and we end up

with a " shorting " out of the signals to our fingers. It is the

feeling of tingling, burning, electrical shots, lack of sensation, numbness,

etc. This is very similar to what MS does-- the difference being that

with MS, the " demylination " of the nerve sheath happens at the base

of the spine and works upward, with NS-

it starts with the ends of the nerves and goes back towards the spine.

(This is why MD's lean towards MS rather than NS.) It is also why I tell

people that my NS is like having MS, peripheral neuropathy, Rheumatoid Arthritis

and Dementia all wrapped in one. (That really explained it too SSDI's

people- because they already have the protocols for disability determination

for those). I know it made the difference in my getting my SSDI on the

1st request.

Now, if it's the inside of your bones that hurt-- it generally means that you

either have granulomas in the bone marrow, or on the bone itself. It can

also be a sign that your body is having to use all the available calcium for

other functions, so it's being leached from your bones. (I've found that

if I take a calcium/magnesium tablet when the inside of my bones hurt--the pain

goes away very, very quickly.) Also, the MSM that I talk about, is a

natural mineral that should be in our foods, but we've engineered it out, and it

is necessary to control pain throughout our body.

Back to the bone pain.

If the bone that has the " bone spur " or " granuloma " build

up on it, and it's in the spot on your spine where the nerve goes out to the

body, then any movement or pressure against that nerve is going to send all

kinds of pain signals to the place that nerve control.s

If the bone spur is on your wrist bones, then the pressure against the nerves-

or if it's on a bone that sits on the discs, then you can get a bone on bone

grating type pain.

Lets say your holding a chicken bone, if there is a problem with the bone and

it's no longer smooth, then any movement will put pressure on the cartlidge,

and it's going to iritate that spot. Since sarcoidosis loves wrists,

hands, feet and ankles-- we end up with alot of pain in those areas.

It's brutal, and it isn't in your head. Since all our body joints and

cartlidge require fluid (synovial fluid) to stay lubricated-- and the only way

we get this fluid is by rehydrating, (drinking alot of water) it only makes

sense that if you are not drinking enough, or are drinking sodas, sparkling

water, or caffeine drinks- all which are actual " dehydrators " -- then

your body can't keep the fluid levels correct for your muscles and discs, and your

pain increases.

If the pain is in your liver, gallbladder, lungs-- it is probably from the

scarring or " fibrosis " of these organs.

I explain that our lungs should look and feel like a new sponge. With

sarcoidosis, the cells that would be the sponge cells, become old, hardened,

split up,== just like that kitchen sponge that needs to be tossed out.

Lynne, I hope this makes sense. My thinking isn't as clear as it should

be right now. But this is the " basics of pain. "

For me, pain control means that I'm having to become aware that if my blood

sugar (high or low sugars will cause nerve pain)-- so refined sugars have had

to go.

The smallest amount of dehydration seems to really send my spine into pain--as

the discs themself become dehydrated (this does show on xrays) and then there

is the added pressure on these discs. My vertebrae have numerous

" spurs " which press against the nerve roots as they go out to my

extremities, and needless to say- it's an attention getter.

Also, dairy products produce Lactic Acid. This acid is what causes the

muscle pain and inflammation that we feel when we exercise. Our body

needs to send this acid out to the muscles, but we don't clear it as we

should. I've found that a Tums or Rolaids before I get on the treadmill

can make a huge difference. (This was a tip one of the MD's I worked for shared

with us. He found that by taking Tums before he went running stopped the

muscle pain.--hmm, cheap fix!)

Food allergies, RED MEAT, all can cause a tremendous amount of pain. With

red meat, it takes 2-3 days to digest, and all this time it's hanging around in

your intestines-- and it's slowing the process of the ridding the toxins

out of your body. This toxic build-up is also pain producing.

As far as what to talk to the MD about. Tell him what's going on.

If you have copies that explain proven sarcoidosis- take those records.

If you have copies of CT's, MRI's or the reports-- take those.

They need more than our " word " to prove to them that we have

pain. Most should know that sarcoidosis produces " sarcoid induced

arthritis " throughout your body.

Tell it like it is. Dont play down the pain, and don't overplay

it.

Much of pain control is getting a good nights sleep, so they may give you a

sleeping pill. It also requires that the seratonin and norephineprin (sp)

levels be correct. These are hormones that control pain and pain

sensation. So they may need to give you an " anti-depressant " to

help with pain control.

They should work you into a exercise program that may consist of starting with

no weight arm exercises. (Reps of not more than 2 or 3 of a movement and

working up) They may tell you if all else fails, sit in your chair and

" march " in place. (Again, 2-3 reps to start with).

If you have nerve pain-- there are a few meds that help. Cymbalta is

getting good reviews. Neurontin is so, so. There are a few others,

but I'm not recalling them right now.

They should help you with " Guided Imagery " , Guided Relaxation ,

Biofeedback, Counselling to help with the issues of loss, Exercise Therapy to

get you to get your body moving at least a bit.

With the diet changes, and the Guided Relaxation and Biofeedback, along with

massage, Pulmonary rehab exercise, and chiropractic-- I'm fortunate enough to

go without pain meds so far. The anti-inflammatories, the immune

supressants that are blocking the TNF-a and b production, the muscle relaxent -

are working for me.

I hope you find some answers,

Blessings,

Tracie

NS Co-owner/moderator

July 21, 2006