Re: Need Advice new member

Posted March 20, 2010 · March 20, 2010

Hello Tracie,

When it rains some people will think the world is against them because they just washed their car.

Other people will look forward to a spring full of flowers.

I can't control which reaction they will have.

As far as I could tell what you wrote is a paraphrase of what I wrote but if judging me helps you

today that's ok with me. I am a little surprised at the result of my first venture at posting though.

I didn't see any other replies at the time.

Cheers,

Darrin

To: Neurosarcoidosis From: tiodaat2001@...Date: Sat, 20 Mar 2010 16:48:26 -0700Subject: Re: Need Advice new member

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.

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.

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.

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.

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.

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.

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.

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 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.

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

To: "neurosarcoidosis " <neurosarcoidosis >Sent: Sat, March 20, 2010 3:21:34 PMSubject: RE: Need Advice new member

Hello and welcome to the group. What is it you want your physicians to do that they aren't doing? Are you going to your visits as a passenger oras a driver? Personally I've found when I go to 'see what happens' it isn't always what I want. When I go with alist of bullet points of questions or issues I'd like addressed they usually are. I'm not sure what you're wantingbut are you sure the doctor is? If a Family Practice doctor was interested enough in sarcoid to be able to treat it one stop shopping style whywouldn't they be a specialist making the big bucks? Are there any doctors of internal medicine with a specialtyin pulmonology near you? Sorry if I got it all wrong. I just can't understand how to find a generalist who is a specialist either. It seemslike a contradiction in terms. Maybe someone has other ideas. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: almelissa (AT) yahoo (DOT) comDate: Sat, 20 Mar 2010 21:31:29 +0000Subject: Need Advice new member

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. ....etcThanks

Posted March 20, 2010 · March 20, 2010

Darrin, you're right-- you aren't going to find a gp that can specialize in any one area of medicine. Hence, the term "general."

With luck, you may find one that has a secondary specialty in ie. diabetes management-- but today, that is only going to be in small communities where the doc is the only show in town.

Medicine has "advanced" to where if you have a problem with your left toe, and you see the right toe doc-- expect another appt with another doc. Sad, but true.

Darrin, we have over 600 members and if any of the moderators or owners read something that seems like it may make a member feel like they really shouldn't ask questions-- or feel put down by the response-- we--the moderators and owners, will speak up--even if you are brand new in posting. Small fires are easy to put out, it is the full blown out of proportion blazes that can wreck havoc-- and it's not going to happen.

So-- instead of playing this program, how about sharing your story of sarcoidosis. What have you got going on? Are you on any medications?

Also, I want to tell you that I do appreciate that you pointed out that taking a list of bullet point concerns to the doc is a great suggestion. It may help us to keep from getting "off-track" when we see our docs. Also, take a friend or family member with you, and pull your chair up so it blocks the door-- that way the bugger can't get out without answering your questions.

Take care,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis " <neurosarcoidosis >Sent: Sat, March 20, 2010 5:56:22 PMSubject: RE: Need Advice new member

Hello Tracie, When it rains some people will think the world is against them because they just washed their car.Other people will look forward to a spring full of flowers. I can't control which reaction they will have. As far as I could tell what you wrote is a paraphrase of what I wrote but if judging me helps youtoday that's ok with me. I am a little surprised at the result of my first venture at posting though.I didn't see any other replies at the time. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Sat, 20 Mar 2010 16:48:26 -0700Subject: Re: Need Advice new member

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.

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.

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.

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.

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.

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.

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.

We have a list of the tests that should be run-- and many sites referenced for your use. WWW.SARCOIDOSISSHAR MA.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 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.

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

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Sat, March 20, 2010 3:21:34 PMSubject: RE: Need Advice new member

Hello and welcome to the group. What is it you want your physicians to do that they aren't doing? Are you going to your visits as a passenger oras a driver? Personally I've found when I go to 'see what happens' it isn't always what I want. When I go with alist of bullet points of questions or issues I'd like addressed they usually are. I'm not sure what you're wantingbut are you sure the doctor is? If a Family Practice doctor was interested enough in sarcoid to be able to treat it one stop shopping style whywouldn't they be a specialist making the big bucks? Are there any doctors of internal medicine with a specialtyin pulmonology near you? Sorry if I got it all wrong. I just can't understand how to find a generalist who is a specialist either. It seemslike a contradiction in terms. Maybe someone has other

ideas. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: almelissa (AT) yahoo (DOT) comDate: Sat, 20 Mar 2010 21:31:29 +0000Subject: Need Advice new member

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. ....etcThanks

Posted March 20, 2010 · March 20, 2010

Hi,

My issues started with what I thought was an attack of optic neuritis in 1984.

I've had troubles walking many times over the years and always figured it meant

I had a bad disc in my back. Eventually neurological deficits began to appear all

over along with cognitive issues and I was let go from work. For many years I've

been seeking medical help and always been dismissed. Not only could I not get

referral to specialists I couldn't get taken seriously or even get basic care. At

some point I realized the doctor's notion that I had dozens of conditions seemed

odd compared to one problem of ms and that's a diagnosis I decided to investigate.

I'm to have more tests run at the end of the month including EVP and SSEP EEGs.

I have no ms lesions (according to my old neuro, my new one is reviewing the film),

sed rate of zero, and ACE of 85.

Since joining this group and learning from the posts of others I've realized chronic

neurosarcoidosis explains not most of my symptoms as ms does, it explains all of

them. Occam's Razor tells us the simple solution is usually the best but I'll let my

specialist decide that. Hopefully I'll know for sure in a few weeks. Whichever it turns

out to be it has made for a frustrating life, less so now that I know the problem isn't

a lack of trying.

My response to the previous poster was reflective of all the barriers ignorant people

put in front of me keeping me from seeing specialists until I got mad and flat out

demanded it unless my physician could come up with an alternate explanation. I

appreciate the perspective of wanting to be able to get centralized care by one

physician very much but for me it was impossible and getting away from that was

the best thing I ever did. The specialist has done more for me in a few hours than

all the other docs (including a neuro) did in years. I just didn't want to see anyone

else being dangerously discounted by a pc. Hopefully in a couple weeks I'll have an

update for you as to my own status.

I'm not on any medications and I'm not sure I ever will be though I reserve the right

to change my mind. What I do is walk whether I'm walking well or I have to use crutches.

Today I went into a new woods and promptly got myself lost. What was going to be

minutes took hours and I dragged myself back to my front door. I like challenges though

and the harder it is the more I appreciate walking if you know what I mean. And it was

a beautiful spring day. Before cog fog you could blindfold me, spin me around, and I'd

always know where North was. Those days are long gone. I try not to walk anyplace now

where the woods are very deep so in any direction I'll hit houses soon enough.

Oddly I find myself already at peace with whichever the diagnosis will be. I just want a

diagnosis so I can end that part of the fight. I'd rather put that energy into trying to keep

walking and doing what people do.

Cheers,

Darrin

To: Neurosarcoidosis From: tiodaat2001@...Date: Sat, 20 Mar 2010 20:31:07 -0700Subject: Re: Need Advice new member