RE: Re: Need Advice new member (MRIs)

[Guest guest]

Thanks. Good info.

Cheers,

Darrin

To: Neurosarcoidosis From: stiks11@...Date: Mon, 22 Mar 2010 03:14:44 +0000Subject: Re: Need Advice new member (MRIs)

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. > > > > 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> > > > > > > > > > ________________________________> > From: Darrin Vernier <gphx@>> > To: "neurosarcoidosis " <neurosarcoidosis >> > Sent: Sat, March 20, 2010 3:21:34 PM> > Subject: 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 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?> >  > > If a Family Practice doctor was interested enough in sarcoid to be able to 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? > >  > > 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.> >  > >  > > Cheers,> > Darrin> > > > > >  > > > > ________________________________> > To: Neurosarcoidosis@ yahoogroups. com> > From: almelissa (AT) yahoo (DOT) com> > Date: Sat, 20 Mar 2010 21:31:29 +0000> > Subject: 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. ....etc> > > > Thanks> > > >>

[Guest guest]

I do wish we had more docs that would just listen,  and when you find one that listens to you, and then tests, that's great.   My Neuro just did reaction tests himself, and told me I had neruosarcoid, then he ordered an MRI, telling me he didn't expect to see much but wanted to rule out any masses, he right away did not think it was MS.  The MRI didn't show anything, but the fact that I couldn't walk without a cane, did show something.  This was when we were fighting for Remicade, his letter was a big help.  He told me to use it as long as I can, because if I don't use it, I will lose it!  So keep using what ever you have left as long as you can, don't give up on  yourself ever!  

Finding a good doctor is not easy, even when you have a firm Sarcoidosis Dx.  I did, and the fist Neuro I saw in a big city, told me she just wasn't sure if I had it or not, as the tests were all good, but I was still

numb on my entire left side??   That is still my worse side, but now it's both legs.  Don't ever, ever give up on you, you are the only one that can truly fight for you. you know how you feel, and what works and what doesn't. 

(walk normal:)  what did he think you were doing???)    Blessings, Marla

 

I thought I had replied to this but it's not showing up.

> >

> > 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  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 to 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

> >

> >

>