Re: Need Advice new member

[Guest guest]

Mellisa.

Welcome to our group. So sorry it had to be this way .. with the dx's of Neurosarcoid there is no getting around having to see Neuro, lung, rhuemy dr. they are the ones trained in treating this disease we have. and than not all of the above even heard or know how to treat this.. But you will need to find a good Neuro and rheumy first off who has treated this disease .. family docs were not trained in treating such disorders. I live in Pa and all my treating docs are At Hereshy Medical center and they are all trained in this illness ..if you would like there names i would be happy to give them to you.

Many blessings and a pain free day Please support Neurosarcoidosis society

[Guest guest]

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 From: almelissa@...Date: 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

[Guest guest]

Welcome !

Unfortunately, we must meet under these circumstances--yet you'll find this forum very loving and supportive. I am a full-time caregiver to my husband that has this monster disease. From his GP, referrals were first made to the pulmonologist, then to a local neurologist, then to a specialized neurologist at the Mayo Clinic to a Rheumotologist.

Please know that you are NOT alone!

Subject: Need Advice new memberTo: Neurosarcoidosis Date: Saturday, March 20, 2010, 5:31 PM

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

[Guest guest]

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

[Guest guest]

,

I think you've found a great ophthalmologist! He is on the right track to at least get that MRI done. It sounds like you've got iritis-- inflammation of the iris-- light sensitivity, dry eyes, all go along with ocular sarcoidoisis. It was my ophthalmologist that diagnosed my sarc-- way back in 1990.

You're not going to find one doc to treat all your sarc issues-- and you definately DO NOT want a GP treating your eyes!-- They won't see if you've got swelling of the macula or retinal damage or even if you have iritis-- which can lead to an acute glaucoma issue, and the loss of vision-- so stay on top of the eyes!

Rheumatologists are great at managing your overall health and the systemic inflammation issues that come with multi=system sarcoidosis. They can also get you out to the other specialists that you need to see.

When you go to any appt ask that they give you a copy of your chart note and that any correspondence be sent to you also, so that you can take a copy to each of your docs-- that way keeping them all "in the loop." Xrays, MRI's, labs, Ct's, EMG's, EEG's, EKG's,-- you need copies of all of them.

At best your GP may have to give the ok and a letter requesting a consult with the Rheumi-- so that you can get the ball rolling.

I just did a post in the last week on PFT's-- pulmonary function tests- and the importance that the doc look at the DLCO-- diffuse lung capacity oxygenation. IF it's low, then they may want to see how you do via a stress test-- are you desaturating when you are at elevation or just taking a walk. They need to avoid the "correction for lung volume"-- as it is not a good marker for Restrictive Obstructive Lung Disease (ROPD.) It also doesn't clue them in on how much scarring you may have in the way of the sarcoidosis. It will be an argument --they don't want to look at it that way, but with sarc-- it's so very important.

Hope this helps,

Sincerely,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sat, March 20, 2010 2:31:29 PMSubject: 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

[Guest guest]

-- I wanted to expand on this.

Neurologists have decided that if there is no CNS involvement-- that they dont call it NS. Many of us have vasculitis-- so the issues can be transient. It won't show up on CT's or MRI's-- so it is important that they order Neuropsych testing. NP testing requires that different areas of the brain be able to function to complete the task at hand-- and can really show that there is a problem-- and can lead to getting some help.

If you have PNS_- peripheral nervous system involvement-- then that too SHOULD be called NS. Neuros don't like to do this-- so you will have to educate them-- it is "old school" thinking on their part. PNS is going to be the nerve pain in your extremities, the inability to control your body temperature, the small nerve fiber neuropathy that is so prevalent, - it gives you a feeling that your skin is on fire- with just even air touching it-- loss of sensation in your extremities, or over stimulation of sensory nerves-- so we can have NS-- even without CNS involvement!

In the ARCHIVES we have several articles that I've posted links to -- so don't be afraid to search around-- and take them with you to your docs!

Hope this helps,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sat, March 20, 2010 4:48:26 PMSubject: 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

[Guest guest]

Tracie; I have been a part of this group for some months now and although I have learned a lot about our complicated illness(es), I appreciate all that you had to say to the new members. A whole lot of what you explained was unknown to me .. that is, I had not heard it spoken before. I remember when I first questioned my pulmonologist about my weight after being on high dose preds for an extended time. When I grew concerned about the tremendous amount of weight, he exclaimed that I had to watch my weight and exercise! I was silently furious, as I questioned how I could exercise when I could hardly breathe at the time; and I was starving but was not eating much and still gained weight. I was always weight conscious before my diagnosis. So, thank you for allowing our new members to fee free

about questions. They should be made to feel comfortable asking any questions, and that makes it easier for me to ask questions too without fear of sounding "stupid." Have a blessed week!! Always, -MayeTo: Neurosarcoidosis Sent: Sat, March 20, 2010 7:48:26 PMSubject: 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

[Guest guest]

Was my response to Darrin's response to not acceptable?I see it has not appeared on our page.It wasn't an attack.It was a my heart felt reaction.Can I be replied to at my email address to let me know.Thanks in advanceHELENSubject: Re: Need Advice new memberTo: Neurosarcoidosis Date: Sunday, March 21, 2010, 5:57 PM

Darrin,

Not only does pred increase the risk of diabetes and osteoporosis, but it increases the risk of hardening of the arteries, mood changes--(like you said your sis had) weight gain, and so much more. What I'm learning is that most of the immunosuppressives add all these issues also, but it comes down to quality of life vs quantity.

For those who end up on meds-- you have to know that all you are treating is the symptoms-- there is no cure yet..

I know that it's because you don't have medical insurance that the docs choose not to do the spinal, and yes-- it is imperative that you get a spinal tap if they are going to label you with MS. There are specific bands of protein that are in MS patients that are inclusive to MS-- so that alone can help them guide your treatments.

What state are you in? Are you on Medicaid (state insurance for low/no income)? This may be an answer-- although with all the states budgets being cut back, it's even getting tougher to qualify for this.

How long have you been out of work? Did you have 10 yrs of working? That may qualify you for SSDI or SSI. Let us know, and I've got alot of info on how to apply.

If you have state assistance, the docs will have to start you on prednisone, as the state says go with the lowest cost med initially, and then you can go up the ladder of meds when they figure out that this approach is not helping you. It's crap that it happens this way, but it is a reality.

This is why we really stress that you need to take as much info to your docs as possible-- so that they can get you a treatment plan that will help.

Take care,

Tracie

NS Co-owenr/moderator

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Sun, March 21, 2010 11:06:13 AMSubject: RE: Need Advice new member

Hi Tracie, They'll want to try Prednisone and I probably won't let them. When I was a kid my sister was on it and she turned from being very nice to beingvery mean. We have a family history of diabetes. I'm lactose intolerant and get verylittle calcium. Prednisone causes diabetes and osteoporosis. I don't think it's for me.But who knows what the future holds. I don't fit the mold and I hope that doesn't upset anyone. I asked my first neuro to do an lp and he refused. If he'd done so I'd be so much furtheralong now. At least I'm finally in the right place. All I'm really hoping for now is a dxbefore my funding runs out. Thanks for your kind thoughts as always. This group has a treasure in you and otherstoo. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Sun, 21 Mar 2010 09:10:01 -0700Subject: Re: Need Advice new member

Darrin, so many of us can really relate to what you are saying. It's so difficult to get answers and NS is a diagnosis of elimination- - and hopefully somewhere else besides the brain will have granulomas they can biopsy. Lungs and muscles are general sites they like to biopsy, personally, there is no way I'll let them biopsy my brain, especially since there are no granulomas appearing on CT's.

If you're getting a spinal tap-- that will probably show inflammation- - and if you do have MS-you will have specific protein markers in the spinal fluid that NS does not have.

If it does turn out that they figure out what is going on, they'll want to try prednisone first, then move up the ladder one med at a time to find a "cocktail" that will work for you.

In the meantime, we'll keep you in our thoughts and see you coming up with the answers you need.

Take care,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Sat, March 20, 2010 9:49:51 PMSubject: RE: Need Advice new member

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 meantI had a bad disc in my back. Eventually neurological deficits began to appear allover along with cognitive issues and I was let go from work. For many years I'vebeen seeking medical help and always been dismissed. Not only could I not getreferral to specialists I couldn't get taken seriously or even get basic care. Atsome point I realized the doctor's notion that I had dozens of conditions seemedodd 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 chronicneurosarcoidosis explains not most of my symptoms as ms does, it explains all ofthem. Occam's Razor tells us the simple solution is usually the best but I'll let myspecialist decide that. Hopefully I'll know for sure in a few weeks. Whichever it turnsout to be it has made for a frustrating life, less so now that I know the problem isn'ta lack of trying. My response to the previous poster was reflective of all the barriers ignorant peopleput 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. Iappreciate 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 wasthe best thing I ever did. The

specialist has done more for me in a few hours thanall the other docs (including a neuro) did in years. I just didn't want to see anyoneelse 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 rightto 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 beminutes took hours and I dragged myself back to my front door. I like challenges thoughand the harder it is the more I appreciate walking if you know what I mean. And it wasa 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 nowwhere 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 adiagnosis so I can end that part of the fight. I'd rather put that energy into trying to keepwalking and doing what people do. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Sat, 20 Mar 2010 20:31:07 -0700Subject: Re: Need Advice new member

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@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>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

[Guest guest]

Hi Tracie,

Quality vs. quantity is a great way to put it.

The money thing is a big mess. Even though I've worked most of the past 33 years I don't

have enough credits in the past ten. Hopefully getting a diagnosis will help with qualifying

for benefits to some degree. I'm putting my resources into a dx before my resources

disappear entirely partly for that reason.

If I talk about money it'll just get me worked up when there's nothing I can do about it at

the moment.

For now I'm kind of in limboland all the way around but the future looks brighter. Patienceis a treasure.

Cheers,

Darrin

To: Neurosarcoidosis From: tiodaat2001@...Date: Sun, 21 Mar 2010 15:57:37 -0700Subject: Re: Need Advice new member

Darrin,

Not only does pred increase the risk of diabetes and osteoporosis, but it increases the risk of hardening of the arteries, mood changes--(like you said your sis had) weight gain, and so much more. What I'm learning is that most of the immunosuppressives add all these issues also, but it comes down to quality of life vs quantity.

For those who end up on meds-- you have to know that all you are treating is the symptoms-- there is no cure yet..

I know that it's because you don't have medical insurance that the docs choose not to do the spinal, and yes-- it is imperative that you get a spinal tap if they are going to label you with MS. There are specific bands of protein that are in MS patients that are inclusive to MS-- so that alone can help them guide your treatments.

What state are you in? Are you on Medicaid (state insurance for low/no income)? This may be an answer-- although with all the states budgets being cut back, it's even getting tougher to qualify for this.

How long have you been out of work? Did you have 10 yrs of working? That may qualify you for SSDI or SSI. Let us know, and I've got alot of info on how to apply.

If you have state assistance, the docs will have to start you on prednisone, as the state says go with the lowest cost med initially, and then you can go up the ladder of meds when they figure out that this approach is not helping you. It's crap that it happens this way, but it is a reality.

This is why we really stress that you need to take as much info to your docs as possible-- so that they can get you a treatment plan that will help.

Take care,

Tracie

NS Co-owenr/moderator

To: "neurosarcoidosis " <neurosarcoidosis >Sent: Sun, March 21, 2010 11:06:13 AMSubject: RE: Need Advice new member

Hi Tracie, They'll want to try Prednisone and I probably won't let them. When I was a kid my sister was on it and she turned from being very nice to beingvery mean. We have a family history of diabetes. I'm lactose intolerant and get verylittle calcium. Prednisone causes diabetes and osteoporosis. I don't think it's for me.But who knows what the future holds. I don't fit the mold and I hope that doesn't upset anyone. I asked my first neuro to do an lp and he refused. If he'd done so I'd be so much furtheralong now. At least I'm finally in the right place. All I'm really hoping for now is a dxbefore my funding runs out. Thanks for your kind thoughts as always. This group has a treasure in you and otherstoo. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Sun, 21 Mar 2010 09:10:01 -0700Subject: Re: Need Advice new member

Darrin, so many of us can really relate to what you are saying. It's so difficult to get answers and NS is a diagnosis of elimination- - and hopefully somewhere else besides the brain will have granulomas they can biopsy. Lungs and muscles are general sites they like to biopsy, personally, there is no way I'll let them biopsy my brain, especially since there are no granulomas appearing on CT's.

If you're getting a spinal tap-- that will probably show inflammation- - and if you do have MS-you will have specific protein markers in the spinal fluid that NS does not have.

If it does turn out that they figure out what is going on, they'll want to try prednisone first, then move up the ladder one med at a time to find a "cocktail" that will work for you.

In the meantime, we'll keep you in our thoughts and see you coming up with the answers you need.

Take care,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Sat, March 20, 2010 9:49:51 PMSubject: RE: Need Advice new member

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 meantI had a bad disc in my back. Eventually neurological deficits began to appear allover along with cognitive issues and I was let go from work. For many years I'vebeen seeking medical help and always been dismissed. Not only could I not getreferral to specialists I couldn't get taken seriously or even get basic care. Atsome point I realized the doctor's notion that I had dozens of conditions seemedodd 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 chronicneurosarcoidosis explains not most of my symptoms as ms does, it explains all ofthem. Occam's Razor tells us the simple solution is usually the best but I'll let myspecialist decide that. Hopefully I'll know for sure in a few weeks. Whichever it turnsout to be it has made for a frustrating life, less so now that I know the problem isn'ta lack of trying. My response to the previous poster was reflective of all the barriers ignorant peopleput 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. Iappreciate 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 wasthe best thing I ever did. The specialist has done more for me in a few hours thanall the other docs (including a neuro) did in years. I just didn't want to see anyoneelse 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 rightto 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 beminutes took hours and I dragged myself back to my front door. I like challenges thoughand the harder it is the more I appreciate walking if you know what I mean. And it wasa 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 nowwhere 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 adiagnosis so I can end that part of the fight. I'd rather put that energy into trying to keepwalking and doing what people do. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Sat, 20 Mar 2010 20:31:07 -0700Subject: Re: Need Advice new member

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@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>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

[Guest guest]

Hi ,

I'm sorry if I accidentally derailed your conversation. I hope someone gave an

answer of use to you.

Cheers,

Darrin

To: Neurosarcoidosis From: almelissa@...Date: 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