Re: Need Advice new member (MRIs)

[Guest guest]

Darrin,

the best test I had was a gallium scan. This showed activity in my lacrimal

glands and in my hilar and mediastinal (chest) - this gave them something to

biopsy.

The lumbar puncture actually couldn't confirm if it was MS or NS because

oligoclonal bands (I think what Tracie is talking about) are not found in all

patients with MS. I was at an MS clinic who thought perhaps they had found

another type of MS. What they did find in my CSF sat halfway between sarcoid and

MS.

The problem was the sarcoid did a good job of hiding itself. I also have

panuveitis - the first thing my opthal did when he saw me was a full body CT

scan which showed no sarcoid. The problem was I was in need of

methylprednisilone immediately to stop me losing my vision and over 5 years I

had an awful lot of it.

Finally the doctors stopped all medication so they had a clear view of my body

and that's when they did the Gallium scan. If you are prednisilone free I would

push for this scan now.

Rach

> >

> > Darin, lighten up! We aren't here to judge others, and the choices they

make-- I really got the feeling of sarcasm from your post-- and we get enough of

that from family and friends.Â

> >

> > When we are new to this disease, not only do we NOT know what to expect from

our docs, we also have a disease where the docs-- including most " specialists "

may only see 1-3 cases of sarcoidosis in their entire career. So, even the

specialists are at a loss as to what and how to treat our sarcoidosis.

> >

> > The common approach is to treat with prednisone. When we bring in the fact

that we are having short-term memory loss, or pain in our hands and feet, and

swollen joints and muscles, most of us are diagnosed with arthritis. When the

ESR comes back in normal range (Erythocyte Sedimentation Rate that tells them if

we have rheumatoid arthritis) they blow us off as depressed or with the catch

all of fibromyalgia. (Most docs still think Fibro is in our heads also...)

> >

> > You'll also find that even if the chest xray shows the " ground glass "

appearance, the pulmonologist will think sarcoidosis, but they also lean to the

general rule of thumg-- sarcoidosis will burn itself out in a couple of years--

and they will argue with you that the other body and mind issues are not at all

related to sarcoidosis. They also lean to the diet/weight issues, so if you

are overweight-- get some exercise and change your diet- and that issue will go

away. They don't put it together that because of systemic body pain and

shortness of breath that this is related to sarcoidosis. Sadly, way too many

of the GP's and the specialists will go here first.Â

> >

> > We end up being our best advocate-- and we have to go in armed with

information so that they can help us. Fortunately, over the past 10 years,

there have been several groups and sites that have come out and can help TEACH

each person how to live as well as possible with sarcoidosis.Â

> >

> > As for knowing what to ask your doctor to do-- how in the world would you

know if you've never even heard of this disease before you were diagnosed, and

if you are one that has only Neurosarc, or ocular involvement, or just pulmonary

involvement-- it is a matter of eliminating ALL the other autoimmune processes

and arthritises, before our docs come up with answers.Â

> >

> > For instance, my neurologist swore I did not have NS. Neurosarcoidosis

includes both the peripheral nervous system as well as the central nervous

system. Neurologists have long thought that if you don't have any granulomas

showing up on brain scans-- that you don't have NS. New studies show that even

a clear CT of the brain does not rule out NS. A clear spinal tap does not mean

that you don't have NS.Â

> >

> > Sarcoidosis is a systemic inflamatory disease-- and they don't know what

causes it. Best we can do is treat the symptoms- and hope that our sarcoidosis

does not progress.Â

> >

> > It is important that we realize that our docs are good at treating diabetes,

high blood pressure, heart disease, and acute health issues-- flu, sinus

infections-- etc-- but since they see so little sarcoidosis-- they really don't

follow up with it-- and most medical groups want their doctors to see 5 patients

per hour-- so they do what they can. Sadly, they also walk into the exam room,

and look at you, within the first minute or so-- they've decided what you have--

and in so many cases-- we're given an anti-inflamatory, or pain meds-- and sent

on our way.Â

> >

> > We have a list of the tests that should be run-- and many sites referenced

for your use. WWW.SARCOIDOSISSHARMA.COM is excellant. Dr. Sharma is a

critical care, pulmonologist at USC-LA. He has also spent his entire medical

career trying to find the answers to treating sarcoidosis. WWW.FSR.ORG Â

Foundation for sarcoidosis research is also excellant-- www.arthritistoday.org

is also excellant for information on different medications-- we use their Drug

Guide and Vitamin/Mineral Guide often as references.Â

> >

> > I'll try to find some prior posts that do have the list of tests, etc that

you can talk to your docs about.

> >

> > In the meantime, know that we are here to help you become as healthy and

comfortable as you can be- and learn to live with Chronic illness. It's not an

easy path-- in fact, if it was a ski run- it'd be a black diamond- so do

remember that we are a SUPPORT GROUP and will extend a helping hand and open

heart to each and every member-- without judgement. NO question is dumb, and

we all start this journey at an uninformed place-- it's wonderful tat we don't

have to stay there.

> >

> > Blessings to all,

> > Tracie

> > NS Co-owner/moderator

> >

> >

> >

> >

> > ________________________________

> > From: Darrin Vernier <gphx@>

> > To: " neurosarcoidosis " <neurosarcoidosis >

> > Sent: Sat, March 20, 2010 3:21:34 PM

> > Subject: RE: Need Advice new member

> >

> > Â

> > Hello and welcome to the group.

> > Â

> > What is it you want your physicians to do that they aren't doing? Are you

going to your visits as a passenger or

> > as a driver? Personally I've found when I go to 'see what happens' it isn't

always what I want. When I go with a

> > list of bullet points of questions or issues I'd like addressed they usually

are. I'm not sure what you're wanting

> > but are you sure the doctor is?

> > Â

> > If a Family Practice doctor was interested enough in sarcoid to be able toÂ

treat it one stop shopping style why

> > wouldn't they be a specialist making the big bucks? Are there any doctors of

internal medicine with a specialty

> > in pulmonology near you?

> > Â

> > Sorry if I got it all wrong. I just can't understand how to find a

generalist who is a specialist either. It seems

> > like a contradiction in terms. Maybe someone has other ideas.

> > Â

> > Â

> > Cheers,

> > Darrin

> >

> >

> > Â

> >

> > ________________________________

> > To: Neurosarcoidosis@ yahoogroups. com

> > From: almelissa (AT) yahoo (DOT) com

> > Date: Sat, 20 Mar 2010 21:31:29 +0000

> > Subject: Need Advice new member

> >

> > Â

> > I was diagnosed with Sarcoid 12/09. My symptoms started back in September.

It started with severe neck and back pain, then numbness in my fingers which

slowly spread up my arm to my torso. It was the strangest thing. I then

developed Bells Palsy on the left side of my face. That is when I went to my 3rd

doctor to try and find out what was wrong with me. GP asked for complete family

history and my sister has sarcoid. Thank God she has been symtom free for over 9

years. The doctor decided to order a ACE level. Well my results were very high

129. My doctor didn't want to do much she treated my Bell's Palsy with steroids

and thankfully my Bell's Palsy went away. I asked for a chest x-ray and it

showed Hilar Adenopathy but just on the right lung. I then saw a pulmonoligist.

At that point I did not have any pulmonary symptoms. I live in Arizona and went

to Sedona for a few days and the elevation is very high and found that I was

getting short of breath. I told

> > my pulmonoligist this and he really did not say to much. Anyways recently I

developed sarcoid in the right eye. My eye was red it didn't hurt was a little

sore. I was hoping it was pink eye. It wasn't so I have been using prednisone

eye drops for 3 weeks now. My opthamologist suggested that I get a MRI of my

brain to rule out cerebral vasculitis. I have my MRI in 2 1/2 weeks. I just feel

like I can not find a doctor who will help me. My sister has a great doctor in

new york. He is a internal medicine doctor who has a specialty in pulmonology.

How can I find a Family Practice doctor who truly understands sarcoid without

having to go to see a opthamologist, pulmonoligist. ....etc

> >

> > Thanks

> >

> >

>