Re: Re: Hi, I'm new.

[Guest guest]

You have found a good place to be . A wealth of information and support. Sorry you have to be here, but glad you found us. Hope we can be of more help in the future,

Debbie

From: <dmatt1960 (AT) yahoo (DOT) com>Subject: Re: Hi, I'm new.To: Neurosarcoidosis@ yahoogroups. comDate: Saturday, July 18, 2009, 8:49 PM

Yes we use prednisone. It won't be going away anytime soon. We were on Methotrexate, but we have reached a point where now we need the Cellcept. She does face mobility issues and they have suggested a cane. We are trying that now....However for someone who was so active she is fighting the assitive technolgies. I am afraid that we will reach the walker stage or the wheelchair. She no longer can work or drive. She does as they say have good days and bad. I am glad to have found this group. It will give me additional support. Thanks to you all.> >>> >> >> >> >> >> >> >> > 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. :-)> >> >> >> >> >> >> >>> >> >> >> >> > ------------ --------- --------- ------> >> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > The Neurosarcoidosis

Community> >> >> > CHATROOM LINK: http://www.sarcbudd ies.com -- Open all the time.....> >> > Message Archives:-> > http://groups. yahoo.com/ group/Neurosarco idosis/messages> >> > Members Database:-> > Listings of locations, phone numbers, and instant messengers.> > http://groups. yahoo.com/ group/Neurosarco idosis/database> >> >

[Guest guest]

Matt, I thought I had answered your first message, but I cant find it, so probably intended to & got distracted. Happens a lot! Has your wife taken other drugs for the sarc prior to the Cellcept? There are a variety of treatment options; most of us need a combination of drugs. As everyone has different effects from the sarc, and respond differently to drugs, it often takes quite a bit of experimentation to find the best combo. And unfortunately, with many of us, either the meds become less effective over time, or we develop unacceptable side effects. Do the two of you have support from family/friends? You mentioned the losses; they are many & accumulate. For me, it has included loss of physical abilities, loss of a rewarding career & the financial security that went with it, loss of credit & my home, loss of friends, the ability to travel at will (I used to just hop into my car & drive from Indiana to Texas to visit kids/grandkids; now just a one-hour trip is exhausting), mental stamina, just one thing after another. I have gained friends, new interests & abilities, new perspectives. The support of this group has kept me going for the last several years. Like most folks with chronic illness, I battle depression. This group is worth its weight in Prozac, if that makes any sense.

You need support for yourself personally, as well as support for your role as caregiver. You & your wife share some of the losses, but you each have your own battles as well. I'm really worn out tonight, but I'll try to give you some more resources in the next couple of days. Don't be afraid to remind me! Give yourself & your wife a gentle hug.

Ramblin' RoseModerator

> To: Neurosarcoidosis > Date: Sat, 18 Jul 2009 03:34:04 +0000> Subject: Re: Hi, I'm new.> > No I am not sorry to have finally found a group that might be helpful. I am the caregiver for my wife jenny who was finally diagnosed with neurosarcoidosis about 4 years ago. Previous to this diagnosis we dealt with seizure disorder. At this point she is taking CellCept to hopefully control the granulomas in the brain and still takes the seizure meds. Our issues are the loss that has occurred as a result of the disease. She suffers greatly with speech issues, tremors and mobilty issues. > > We moved from our house in Northwest Jersey about 2 and a half years ago to make it easier on her. We went to a townhouse and yet the issues seem to just get worse. > > I know many people suffer with this disease in the lungs and from lesions. Since i am new to the group on behalf of my wife are there others who are suffering with the disease in the brain as well? Some days I feel like the doctors are no better than high priced plumbers trying to fix a leak in a pipe that just won't stay fixed. > > We have good doctors at the Lehigh Valley Hospital since we are now in Easton PA, but I keep searching hoping that something might help. We like others have lost so much. > > Darryl (Matt) > > > > > > > > >> > >> > >> > > 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. :-)> > >> > > > > >> >> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > CHATROOM LINK: http://www.sarcbuddies.com -- Open all the time.....> > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >