Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hi Barbi, Sorry tohear your husband has sarcoidosis. For those of us with this disease systemically, as well as lungs and brain-- it is a very hard battle. The challenge is that the majority of information on sarcoidosis is never seen by our MD's-- because they don't think they see very much of it. My guess is that they don't recognize it when they see it-- and just pass us off as hypochondriacs or they use fibromyalgia or chronic fatigue or one of the other easy diagnosis. You are so right when you say that you get so much help online-- I know that if i type in sarcoidosis or neurosarcoidosis or sarcoidosis and the brain, or bones or whatever, that I'm given alot of sites to view. I highly recommend that all of us do exactly that-- type in "sarcoidosis and the liver" or "sarcoidosis and the brain" and check out what is out there. By educating ourselves, we empower ourselves and give energy to our healing. Let us know how we ca help-- we are a "real" bunch of patients and caregivers holding hearts and hands on this journey. Compassionately, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hi Barbi, Sorry tohear your husband has sarcoidosis. For those of us with this disease systemically, as well as lungs and brain-- it is a very hard battle. The challenge is that the majority of information on sarcoidosis is never seen by our MD's-- because they don't think they see very much of it. My guess is that they don't recognize it when they see it-- and just pass us off as hypochondriacs or they use fibromyalgia or chronic fatigue or one of the other easy diagnosis. You are so right when you say that you get so much help online-- I know that if i type in sarcoidosis or neurosarcoidosis or sarcoidosis and the brain, or bones or whatever, that I'm given alot of sites to view. I highly recommend that all of us do exactly that-- type in "sarcoidosis and the liver" or "sarcoidosis and the brain" and check out what is out there. By educating ourselves, we empower ourselves and give energy to our healing. Let us know how we ca help-- we are a "real" bunch of patients and caregivers holding hearts and hands on this journey. Compassionately, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hi Barbi, Sorry tohear your husband has sarcoidosis. For those of us with this disease systemically, as well as lungs and brain-- it is a very hard battle. The challenge is that the majority of information on sarcoidosis is never seen by our MD's-- because they don't think they see very much of it. My guess is that they don't recognize it when they see it-- and just pass us off as hypochondriacs or they use fibromyalgia or chronic fatigue or one of the other easy diagnosis. You are so right when you say that you get so much help online-- I know that if i type in sarcoidosis or neurosarcoidosis or sarcoidosis and the brain, or bones or whatever, that I'm given alot of sites to view. I highly recommend that all of us do exactly that-- type in "sarcoidosis and the liver" or "sarcoidosis and the brain" and check out what is out there. By educating ourselves, we empower ourselves and give energy to our healing. Let us know how we ca help-- we are a "real" bunch of patients and caregivers holding hearts and hands on this journey. Compassionately, Tracie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hello My name is Barbi and I am married to a sarcoidosis sufferer called Mick. He was diagnosed definitely in March 2002 but had been suffering with tiredness etc for a number of years.He was in fact being treated for panic attacks as he said he couldn't breathe but x-rays only revealed that he had smoked at one time.It wasn't until a lung scan revealed the extent of the damage..he has fibrosis of the lung.He gave up smoking over 10 years ago when he was told he had diabetes. He was made redundant in 2000 but the doctor didn't think that he should be looking for work and started to make arrangements for him to see a specialist.They were 99% sure it was sarcoidosis but it wasn't until he was really poorly in March 2002 and a lump on his back revealed after a biopsy that it was indeed sarcoid. He had a brain scan last year and has now been waiting 6 months for another MRI scan and to see a nerve and muscle specialist as the neurologist is practically certain it is in his nervous system. Mick has been experiencing tremors, altered movement in legs i.e. his legs sometimes want to go a different way and his balance is terrible. He gets very down at times. The sarcoid has also attacked his eyes and has caused some scarring at the back of them and he suffers with light sensitivity and dry eye.Fortunately it has caused no difference to his eyesight although he has had to have stronger reading glasses but that could be age! He also had a heart attack last year but they are putting that down to the diabetes and he is to see the cardiologist in August. He's 54 but says he feels like a really old man.I have found reading about the disease on the internet a great help. Just knowing that there are others that know what my husband is going through helps My regards to all who read this..Keep smiling. Barbi and Mick Lincoln England Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hey, Barbi - I'm Jeri, and my husband, Gregg, has it. We just got done with his 7th surgery, 11th hosptialization and 14th Emergency Room visit. Gregg is only 40, but he's also like a really old man. Gregg is one of the rare ones who has the Sarcoidosis only in his brain and spinal fluid. Anytime you want to talk - as the well spouse of a chronically ill person, please feel free. It can be devastating, but we're strong! LOL (not much choice, is there?) No joke - I'm here for you! This is a great group and one couldn't ask for better, more Loving support! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hey, Barbi - I'm Jeri, and my husband, Gregg, has it. We just got done with his 7th surgery, 11th hosptialization and 14th Emergency Room visit. Gregg is only 40, but he's also like a really old man. Gregg is one of the rare ones who has the Sarcoidosis only in his brain and spinal fluid. Anytime you want to talk - as the well spouse of a chronically ill person, please feel free. It can be devastating, but we're strong! LOL (not much choice, is there?) No joke - I'm here for you! This is a great group and one couldn't ask for better, more Loving support! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hey, Barbi - I'm Jeri, and my husband, Gregg, has it. We just got done with his 7th surgery, 11th hosptialization and 14th Emergency Room visit. Gregg is only 40, but he's also like a really old man. Gregg is one of the rare ones who has the Sarcoidosis only in his brain and spinal fluid. Anytime you want to talk - as the well spouse of a chronically ill person, please feel free. It can be devastating, but we're strong! LOL (not much choice, is there?) No joke - I'm here for you! This is a great group and one couldn't ask for better, more Loving support! Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2004 Report Share Posted June 13, 2004 HI Barbi & Mick ! Welcome to the group.. here as many of us has said.. you will find alot of support and info.. I'm a new member also, and this group has really helped me through some things.. and still are !! It's just good to know they are there... so your NOT ALONE... welcome and hope to catch you on line chat one day.. joleen j:) Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Hello from a new member Date: Sat, 12 Jun 2004 22:44:32 +0100 Hello My name is Barbi and I am married to a sarcoidosis sufferer called Mick. He was diagnosed definitely in March 2002 but had been suffering with tiredness etc for a number of years.He was in fact being treated for panic attacks as he said he couldn't breathe but x-rays only revealed that he had smoked at one time.It wasn't until a lung scan revealed the extent of the damage..he has fibrosis of the lung.He gave up smoking over 10 years ago when he was told he had diabetes. He was made redundant in 2000 but the doctor didn't think that he should be looking for work and started to make arrangements for him to see a specialist.They were 99% sure it was sarcoidosis but it wasn't until he was really poorly in March 2002 and a lump on his back revealed after a biopsy that it was indeed sarcoid. He had a brain scan last year and has now been waiting 6 months for another MRI scan and to see a nerve and muscle specialist as the neurologist is practically certain it is in his nervous system. Mick has been experiencing tremors, altered movement in legs i.e. his legs sometimes want to go a different way and his balance is terrible. He gets very down at times. The sarcoid has also attacked his eyes and has caused some scarring at the back of them and he suffers with light sensitivity and dry eye.Fortunately it has caused no difference to his eyesight although he has had to have stronger reading glasses but that could be age! He also had a heart attack last year but they are putting that down to the diabetes and he is to see the cardiologist in August. He's 54 but says he feels like a really old man.I have found reading about the disease on the internet a great help. Just knowing that there are others that know what my husband is going through helps My regards to all who read this..Keep smiling. Barbi and Mick Lincoln England Watch the online reality show Mixed Messages with a friend and enter to win a trip to NY Quote Link to comment Share on other sites More sharing options...
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