Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 Thanks for the words of welcome and the feedback on my heating dilemma. Sounds like the pellet stoves are not the way to go. It seems like electric is the best for Atticus ~ nothing actually burning in the house. Is this accurate? That option bums me out from an environmental, efficiency, and cost standpoint, but of course if it is good for him, that's good! I guess someone else will have to save the planet ~ I have other obligations! ;-) I heard from the CF clinic at Hopkins today and we are scheduled for Friday 9 AM. I had a good first impression of them on the phone. Thanks everyone ~ it is SUCH a comfort to know that you are all " nearby. " Best wishes, in land Mama to Emma (7) and Atticus (19 months and newly diagnosed cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 GREAT. Take notes ....ask for all the literature & tapes they had. They wont mention them to you if you don't . It will help you when you have them at home & can review calmly. If they don't , write me for some LOVE & HUGS< grandmomBEV thanks for the welcome Thanks for the words of welcome and the feedback on my heating dilemma. Sounds like the pellet stoves are not the way to go. It seems like electric is the best for Atticus ~ nothing actually burning in the house. Is this accurate? That option bums me out from an environmental, efficiency, and cost standpoint, but of course if it is good for him, that's good! I guess someone else will have to save the planet ~ I have other obligations! ;-) I heard from the CF clinic at Hopkins today and we are scheduled for Friday 9 AM. I had a good first impression of them on the phone. Thanks everyone ~ it is SUCH a comfort to know that you are all " nearby. " Best wishes, in land Mama to Emma (7) and Atticus (19 months and newly diagnosed cf) ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2003 Report Share Posted July 8, 2003 Hi , I remember so well how it felt when my daughter was first diagnosed. There is a period of time when it is really hard to be optimistic. It is compounded by reading all the statistics and clinical information on the internet. I did it. We all did it. It is great that you joined this group because you can hear about kids living with CF. They are happy normal kids in every other respect. Believe me when I say that you will feel better as some time goes by and you start to get over the shock and the sadness and get into the routine of what needs to be done for your daughter. You will also find that you can't dwell on the negative possibilities. We all know they are there and they do become reality for some of us at times, but for your own sake, your daughter and your other children, you can't let those thoughts weigh you down. You are lucky to live where you do. Hopkins has one of the better CF Centers in the country and you will have access to the finest care available. We almost relocated to Baltimore last year so I did soem research. Thinking good thoughts for you, Marissa mother of , 5 yr w/cf cfparents , " Hersemann Leibman " <leibman@s...> wrote: > Thanks for the words of welcome and the feedback on my heating dilemma. > Sounds like the pellet stoves are not the way to go. It seems like electric > is the best for Atticus ~ nothing actually burning in the house. Is this > accurate? That option bums me out from an environmental, efficiency, and > cost standpoint, but of course if it is good for him, that's good! I guess > someone else will have to save the planet ~ I have other obligations! ;-) > > I heard from the CF clinic at Hopkins today and we are scheduled for Friday > 9 AM. I had a good first impression of them on the phone. > > Thanks everyone ~ it is SUCH a comfort to know that you are all " nearby. " > > Best wishes, > in land > Mama to Emma (7) and Atticus (19 months and newly diagnosed cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2009 Report Share Posted July 26, 2009 I would ditch your thoracic guy so fast it wouldn't be funny. Your already having symptoms, and he wants to do quarterly review, I don't think so. Sorry don't mean to get all in your koolaid, but you don't play with sarcoid; it does not play fair, and like a very errant child will start all kinds of trouble if left to it's own devices. Has he ever treated anyone with sarcoid? Hope you find the information you need in the archives and from the moderators, with this illness you have to become you own best medical advocate. Take care, connie From: third_usher <third_usher@ yahoo.com>Subject: Thanks for the welcomeTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, July 13, 2009, 8:55 AM Sorry to be replying to my own message, I have not been in an emailgroup or used this forum layout before, it will take a while to find myway around.Thanks to all for the welcome, and for the biographies and advice. Iguess you all know the difference it makes not feeling like the onlyperson in the world with this!No, I'm not on any treatments or medications or anything. The diseasewas diagnosed back in May; the thoracic guy reckons that a quarterlyreview is adequate, and is unwilling to treat the sarcoidosis, he saysthat the treatment can be as bad as the disease, so we don't treat ituntil the treatment is the lesser of the two evils, hence the quarterlyreview to monitor the situation.Anyhow, thanks again everyone, am off to do even more research.> Hi all, I signed up a while ago, and thought I should introduce myself> properly.>> I'm 30 years old, I live in Australia, am a full time student, have a> husband, 2 kids (2 years old and 6 months old repectively) , 3 cats, 2> chickens, and a rabbit.>> I spent most of April in hospital with chest pain and breathing> problems, spent my 30th birthday having a lung biopsy, and was told> shortly after they are "95% sure" I have sarcoidosis (which,admittedly,> is a little bit better than the original guesses of tumour orlymphoma).> I am due for the next round of testing in roughly a fortnight, to find> out how far it has spread/what organs it's affecting, how fast it's> moving, etc. etc.>> I don't really have a huge understanding of the disease, mainly Ithink> because so little is known about it. I haven't really told manypeople,> I did tell my husband and family, all of whom said "well you look> alright to me" and filed it into the "never to be mentioned again"> category.>> I'm going a little bit crazy: my head pounds all the time, all mybones> and joints ache, I itch so badly I am tearing my skin off in my sleep,> every breath I take feels like it has no oxygen in it, I spend a lotof> time doing a gasping goldfish imitation, my heart does all these weird> rhythm and beat strength changes at no notice, and I am exhausted all> the time, if I had any choice in the matter I would happily sleep for20> hours or so in every 24. But apparently that's all ok, because I look> alright.>> My sarcoidosis is being overseen by a thoracic specialist; accordingto> the local nurse, this is because it is a multi-organ disease, so> whichever organ it is found in gets given authority and everythingelse> gets outsourced. For some reason, that makes me laugh.>> Anyhow, that's me in a nutshell. Nice to know I'm not alone.>> Thanks for accepting my membership. :-)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 Thanks Connie, you can hop in my Koolaid anytime! We lived in Canada for a while when I was a kid, I miss Koolaid. Maybe someone can help with this one: I'm actually having trouble differentiating for myself what may or may not be sarcoid related. I've been putting up with lots of niggly stuff for ages, thinking it was just me, or perfectly normal, or just part of getting a little older. I realise sarcoidosis is different for everyone. Is it normal to ache all the time? forget and/or muddle up words? to lose coordination when tired? (which, let's face it, seems to be most of the time!) feel like the eyeballs are about to explode? have weird bumps on the fingers that itch like crazy, callous over, and then have all the skin fall off? Or is my thoracic guy right: these all have many different causes, and probably aren't sarc related? > > > From: third_usher <third_usher@ yahoo.com>> Subject: Thanks for the welcome> To: Neurosarcoidosis@ yahoogroups. com> Date: Monday, July 13, 2009, 8:55 AM> > > > > > Sorry to be replying to my own message, I have not been in an email> group or used this forum layout before, it will take a while to find my> way around.> > Thanks to all for the welcome, and for the biographies and advice. I> guess you all know the difference it makes not feeling like the only> person in the world with this!> > No, I'm not on any treatments or medications or anything. The disease> was diagnosed back in May; the thoracic guy reckons that a quarterly> review is adequate, and is unwilling to treat the sarcoidosis, he says> that the treatment can be as bad as the disease, so we don't treat it> until the treatment is the lesser of the two evils, hence the quarterly> review to monitor the situation.> > Anyhow, thanks again everyone, am off to do even more research.> > > Hi all, I signed up a while ago, and thought I should introduce myself> > properly.> >> > I'm 30 years old, I live in Australia, am a full time student, have a> > husband, 2 kids (2 years old and 6 months old repectively) , 3 cats, 2> > chickens, and a rabbit.> >> > I spent most of April in hospital with chest pain and breathing> > problems, spent my 30th birthday having a lung biopsy, and was told> > shortly after they are "95% sure" I have sarcoidosis (which,> admittedly,> > is a little bit better than the original guesses of tumour or> lymphoma).> > I am due for the next round of testing in roughly a fortnight, to find> > out how far it has spread/what organs it's affecting, how fast it's> > moving, etc. etc.> >> > I don't really have a huge understanding of the disease, mainly I> think> > because so little is known about it. I haven't really told many> people,> > I did tell my husband and family, all of whom said "well you look> > alright to me" and filed it into the "never to be mentioned again"> > category.> >> > I'm going a little bit crazy: my head pounds all the time, all my> bones> > and joints ache, I itch so badly I am tearing my skin off in my sleep,> > every breath I take feels like it has no oxygen in it, I spend a lot> of> > time doing a gasping goldfish imitation, my heart does all these weird> > rhythm and beat strength changes at no notice, and I am exhausted all> > the time, if I had any choice in the matter I would happily sleep for> 20> > hours or so in every 24. But apparently that's all ok, because I look> > alright.> >> > My sarcoidosis is being overseen by a thoracic specialist; according> to> > the local nurse, this is because it is a multi-organ disease, so> > whichever organ it is found in gets given authority and everything> else> > gets outsourced. For some reason, that makes me laugh.> >> > Anyhow, that's me in a nutshell. Nice to know I'm not alone.> >> > Thanks for accepting my membership. :-)> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 third usher, Well those are half of my symptoms and I have Neurosarcoidosis. But also: Memory Lost Lost of Balance Anger Management issues - oo no that’s the Prednisone symptom also Lost of Energy/Drive - always tired Spelling Issues Skin lost may be sarcoid involvement in your skin. I would see a Dermatologist as soon as possible for that. Ok now I have built a team of Doctors to assist in my treatments A Internist to manage all the meds A Neurologist - Because of the Neuro involvement A Plumnoglist - due to some upper lung involvement A Rhemuatologist - Due to some joint involvement and alternate treatments besides Prednisone. He's about switch me to Humria if we get approval from Insurance. I am improving slowly but still see improvement. Just some suggestions. Greg From: third_usher Sent: Monday, July 27, 2009 8:24 AM To: Neurosarcoidosis Subject: Re: Thanks for the welcome Thanks Connie, you can hop in my Koolaid anytime! We lived in Canada for a while when I was a kid, I miss Koolaid. Maybe someone can help with this one: I'm actually having trouble differentiating for myself what may or may not be sarcoid related. I've been putting up with lots of niggly stuff for ages, thinking it was just me, or perfectly normal, or just part of getting a little older. I realise sarcoidosis is different for everyone. Is it normal to ache all the time? forget and/or muddle up words? to lose coordination when tired? (which, let's face it, seems to be most of the time!) feel like the eyeballs are about to explode? have weird bumps on the fingers that itch like crazy, callous over, and then have all the skin fall off? Or is my thoracic guy right: these all have many different causes, and probably aren't sarc related? > > > From: third_usher <third_usher@ yahoo.com>> Subject: Thanks for the welcome> To: Neurosarcoidosis@ yahoogroups. com> Date: Monday, July 13, 2009, 8:55 AM> > > > > > Sorry to be replying to my own message, I have not been in an email> group or used this forum layout before, it will take a while to find my> way around.> > Thanks to all for the welcome, and for the biographies and advice. I> guess you all know the difference it makes not feeling like the only> person in the world with this!> > No, I'm not on any treatments or medications or anything. The disease> was diagnosed back in May; the thoracic guy reckons that a quarterly> review is adequate, and is unwilling to treat the sarcoidosis, he says> that the treatment can be as bad as the disease, so we don't treat it> until the treatment is the lesser of the two evils, hence the quarterly> review to monitor the situation.> > Anyhow, thanks again everyone, am off to do even more research.> > > Hi all, I signed up a while ago, and thought I should introduce myself> > properly.> >> > I'm 30 years old, I live in Australia, am a full time student, have a> > husband, 2 kids (2 years old and 6 months old repectively) , 3 cats, 2> > chickens, and a rabbit.> >> > I spent most of April in hospital with chest pain and breathing> > problems, spent my 30th birthday having a lung biopsy, and was told> > shortly after they are "95% sure" I have sarcoidosis (which,> admittedly,> > is a little bit better than the original guesses of tumour or> lymphoma).> > I am due for the next round of testing in roughly a fortnight, to find> > out how far it has spread/what organs it's affecting, how fast it's> > moving, etc. etc.> >> > I don't really have a huge understanding of the disease, mainly I> think> > because so little is known about it. I haven't really told many> people,> > I did tell my husband and family, all of whom said "well you look> > alright to me" and filed it into the "never to be mentioned again"> > category.> >> > I'm going a little bit crazy: my head pounds all the time, all my> bones> > and joints ache, I itch so badly I am tearing my skin off in my sleep,> > every breath I take feels like it has no oxygen in it, I spend a lot> of> > time doing a gasping goldfish imitation, my heart does all these weird> > rhythm and beat strength changes at no notice, and I am exhausted all> > the time, if I had any choice in the matter I would happily sleep for> 20> > hours or so in every 24. But apparently that's all ok, because I look> > alright.> >> > My sarcoidosis is being overseen by a thoracic specialist; according> to> > the local nurse, this is because it is a multi-organ disease, so> > whichever organ it is found in gets given authority and everything> else> > gets outsourced. For some reason, that makes me laugh.> >> > Anyhow, that's me in a nutshell. Nice to know I'm not alone.> >> > Thanks for accepting my membership. :-)> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 I agree. It took us a long time to find a doctor who might adequately assist us. During that time we had so many mis diagnosis it was not funny. By the time we got appropriate help the sarc had already taken a foothold and was doing its damage. Find another doctor who can either help you or be willing to get you the proper help. Take care. If nothing else from dealing with the neurosarcoidosis I have found that one must become proactive and an outright advocate for their own care.matthew From: third_usher <third_usher@ yahoo.com>Subject: Thanks for the welcomeTo: Neurosarcoidosis@ yahoogroups. comDate: Monday, July 13, 2009, 8:55 AM Sorry to be replying to my own message, I have not been in an emailgroup or used this forum layout before, it will take a while to find myway around.Thanks to all for the welcome, and for the biographies and advice. Iguess you all know the difference it makes not feeling like the onlyperson in the world with this!No, I'm not on any treatments or medications or anything. The diseasewas diagnosed back in May; the thoracic guy reckons that a quarterlyreview is adequate, and is unwilling to treat the sarcoidosis, he saysthat the treatment can be as bad as the disease, so we don't treat ituntil the treatment is the lesser of the two evils, hence the quarterlyreview to monitor the situation.Anyhow, thanks again everyone, am off to do even more research.> Hi all, I signed up a while ago, and thought I should introduce myself> properly.>> I'm 30 years old, I live in Australia, am a full time student, have a> husband, 2 kids (2 years old and 6 months old repectively) , 3 cats, 2> chickens, and a rabbit.>> I spent most of April in hospital with chest pain and breathing> problems, spent my 30th birthday having a lung biopsy, and was told> shortly after they are "95% sure" I have sarcoidosis (which,admittedly,> is a little bit better than the original guesses of tumour orlymphoma).> I am due for the next round of testing in roughly a fortnight, to find> out how far it has spread/what organs it's affecting, how fast it's> moving, etc. etc.>> I don't really have a huge understanding of the disease, mainly Ithink> because so little is known about it. I haven't really told manypeople,> I did tell my husband and family, all of whom said "well you look> alright to me" and filed it into the "never to be mentioned again"> category.>> I'm going a little bit crazy: my head pounds all the time, all mybones> and joints ache, I itch so badly I am tearing my skin off in my sleep,> every breath I take feels like it has no oxygen in it, I spend a lotof> time doing a gasping goldfish imitation, my heart does all these weird> rhythm and beat strength changes at no notice, and I am exhausted all> the time, if I had any choice in the matter I would happily sleep for20> hours or so in every 24. But apparently that's all ok, because I look> alright.>> My sarcoidosis is being overseen by a thoracic specialist; accordingto> the local nurse, this is because it is a multi-organ disease, so> whichever organ it is found in gets given authority and everythingelse> gets outsourced. For some reason, that makes me laugh.>> Anyhow, that's me in a nutshell. Nice to know I'm not alone.>> Thanks for accepting my membership. :-)> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2009 Report Share Posted July 27, 2009 Greg,we have done the same. A neurologist to manage the seizures caused by the brain issues. A rheumotologist to help with the prednisone and cellcept. The regular family doctor to oversee other related helath issues. A team of Physical therapy people to help with balance and mobilty issues. Collectively they each help with a segment of the illness. We have finally put together a team of doctors who actually communicate with each other to assist us. Take care, be well.Subject: Re: Re: Thanks for the welcomeTo: Neurosarcoidosis Date: Monday, July 27, 2009, 10:43 AM third usher, Well those are half of my symptoms and I have Neurosarcoidosis. But also: Memory Lost Lost of Balance Anger Management issues - oo no that’s the Prednisone symptom also Lost of Energy/Drive - always tired Spelling Issues Skin lost may be sarcoid involvement in your skin. I would see a Dermatologist as soon as possible for that. Ok now I have built a team of Doctors to assist in my treatments A Internist to manage all the meds A Neurologist - Because of the Neuro involvement A Plumnoglist - due to some upper lung involvement A Rhemuatologist - Due to some joint involvement and alternate treatments besides Prednisone. He's about switch me to Humria if we get approval from Insurance. I am improving slowly but still see improvement. Just some suggestions. Greg From: third_usher Sent: Monday, July 27, 2009 8:24 AM To: Neurosarcoidosis@ yahoogroups. com Subject: Re: Thanks for the welcome Thanks Connie, you can hop in my Koolaid anytime! We lived in Canada for a while when I was a kid, I miss Koolaid. Maybe someone can help with this one: I'm actually having trouble differentiating for myself what may or may not be sarcoid related. I've been putting up with lots of niggly stuff for ages, thinking it was just me, or perfectly normal, or just part of getting a little older. I realise sarcoidosis is different for everyone. Is it normal to ache all the time? forget and/or muddle up words? to lose coordination when tired? (which, let's face it, seems to be most of the time!) feel like the eyeballs are about to explode? have weird bumps on the fingers that itch like crazy, callous over, and then have all the skin fall off? Or is my thoracic guy right: these all have many different causes, and probably aren't sarc related? > > > From: third_usher <third_usher@ yahoo.com>> Subject: Thanks for the welcome> To: Neurosarcoidosis@ yahoogroups. com> Date: Monday, July 13, 2009, 8:55 AM> > > > > > Sorry to be replying to my own message, I have not been in an email> group or used this forum layout before, it will take a while to find my> way around.> > Thanks to all for the welcome, and for the biographies and advice. I> guess you all know the difference it makes not feeling like the only> person in the world with this!> > No, I'm not on any treatments or medications or anything. The disease> was diagnosed back in May; the thoracic guy reckons that a quarterly> review is adequate, and is unwilling to treat the sarcoidosis, he says> that the treatment can be as bad as the disease, so we don't treat it> until the treatment is the lesser of the two evils, hence the quarterly> review to monitor the situation.> > Anyhow, thanks again everyone, am off to do even more research.> > > Hi all, I signed up a while ago, and thought I should introduce myself> > properly.> >> > I'm 30 years old, I live in Australia, am a full time student, have a> > husband, 2 kids (2 years old and 6 months old repectively) , 3 cats, 2> > chickens, and a rabbit.> >> > I spent most of April in hospital with chest pain and breathing> > problems, spent my 30th birthday having a lung biopsy, and was told> > shortly after they are "95% sure" I have sarcoidosis (which,> admittedly,> > is a little bit better than the original guesses of tumour or> lymphoma).> > I am due for the next round of testing in roughly a fortnight, to find> > out how far it has spread/what organs it's affecting, how fast it's> > moving, etc. etc.> >> > I don't really have a huge understanding of the disease, mainly I> think> > because so little is known about it. I haven't really told many> people,> > I did tell my husband and family, all of whom said "well you look> > alright to me" and filed it into the "never to be mentioned again"> > category.> >> > I'm going a little bit crazy: my head pounds all the time, all my> bones> > and joints ache, I itch so badly I am tearing my skin off in my sleep,> > every breath I take feels like it has no oxygen in it, I spend a lot> of> > time doing a gasping goldfish imitation, my heart does all these weird> > rhythm and beat strength changes at no notice, and I am exhausted all> > the time, if I had any choice in the matter I would happily sleep for> 20> > hours or so in every 24. But apparently that's all ok, because I look> > alright.> >> > My sarcoidosis is being overseen by a thoracic specialist; according> to> > the local nurse, this is because it is a multi-organ disease, so> > whichever organ it is found in gets given authority and everything> else> > gets outsourced. For some reason, that makes me laugh.> >> > Anyhow, that's me in a nutshell. Nice to know I'm not alone.> >> > Thanks for accepting my membership. :-)> >> Quote Link to comment Share on other sites More sharing options...
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