Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Yes prior to the cellcept we used a combination of prednisone & methotrexate. It seems that the methotrexate has stopped working. So now we have begunn the cellcept @1000mg twice a day. The losses as you say they are many. When this all first started several years back with seizures she was still able to drive and work. She ran the bookkeeping dept. of a flower shop. It has really been the past 4 years that things have taken such a turn for the worse. She can no longer work or drive. She suffers with tremors like Parkinsons. There is the mobility loss that we are now using a cane to try to combat. There are the processing issues since hers is in the brain and this also caused speech difficulties. The symptoms we face seem to pattern so many other illnesses. We can no longer just pick up and go. We might have plans, that have to be cancelled at the last minute due to her not functioning well enough to go. This has sort of lead to us not being invited to certain gatherings as we might not be able to be there anyway. This causes quite a bit of anxiety and some depression on her part. I try to keep things as regular as I can. When she is up to it I will take her the places she wants to go. We are lucky that I am able to work and support most of the household needs. She does get disability but this does not make her feel any better. She would rather work. Thanks for the reply and yes it does help to finally know that one is not alone in this fight. I have resorted to letting family know exactly the issues even though she says she doesn't want them to know. All they have to do is be in her company a few minutes and they know something is not right. I get aksed quite often when she had the stroke or has the MS gotten worse. I simply answer anymore it is the side symptoms of the neurosarcoidosis. Our closest friends know and understand. Take care and be as well as you can be.Subject: RE: Re: Hi, I'm new.To: neurosarcoidosis Date: Friday, July 24, 2009, 12:03 AM 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@ yahoogroups. com> From: dmatt1960 (AT) yahoo (DOT) com> 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.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 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Wow, Kay Seminar was outstanding, the training, and the entertainment we received, was incredible, I had so much fun, I took my wheel chair, and was in it, unless in my room. I had plenty of help with the pushing, at first I felt like a burden, then as the days went by, I felt comfortable, I saw so many others in wheelchairs too, but I can't remember seeing that before. In fact I was a bit lazy, I didn't do my exercises either. I am glad to be home, although behind once again in my emails., I need to get back to exercises. I will try to catch up. Hope you are doing well Jackie. God Bless, Marl a thanks Marla I am lucky to have a sister who bugs me to move all the time. I also have a daughter and granddaughter who are on me to walk more. Sometimes I want to scream leave me alone I can't do anymore than this. but I just listen and get up and walk It does me good. Kay Convention sounds like it would be fun. I used to use Kay all the time. I even have glamour shots from a party I went to. It was fun. You have a great time and you keep on keeping on. Blessings Jackie Hi, I'm new.>> 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>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 Marla, I know a midwife with MS. I usually just saw her once a year, at our annual conference. One year she was just using a cane, after being in a w/c the year before. Then the next year she was back in the w/c. I had just gotten the NS diagnosis, and we had lunch one day. I mentioned the w/c situation & she told me that lots of people felt bad for her when she relapsed & needed the chair, but she was just grateful to have that as an option when she needed it. That's helped me when I'm feeling guilty for using a handicapped parking spot, or an electric cart in the store. Some days I don't need that option & some days I do. Sometimes I'll go in Walmart & there aren't any carts available, but I decide to just tough it out. Other days I know that I can't do it, and sit down to wait for a cart. Ramblin' RoseModerator "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver To: Neurosarcoidosis From: mebramer@...Date: Fri, 24 Jul 2009 10:33:28 -0600Subject: Re: Hi, I'm new. Wow, Kay Seminar was outstanding, the training, and the entertainment we received, was incredible, I had so much fun, I took my wheel chair, and was in it, unless in my room. I had plenty of help with the pushing, at first I felt like a burden, then as the days went by, I felt comfortable, I saw so many others in wheelchairs too, but I can't remember seeing that before. In fact I was a bit lazy, I didn't do my exercises either. I am glad to be home, although behind once again in my emails., I need to get back to exercises.I will try to catch up. Hope you are doing well Jackie. God Bless, Marl a thanks Marla I am lucky to have a sister who bugs me to move all the time. I also have a daughter and granddaughter who are on me to walk more. Sometimes I want to scream leave me alone I can't do anymore than this. but I just listen and get up and walk It does me good. Kay Convention sounds like it would be fun. I used to use Kay all the time. I even have glamour shots from a party I went to. It was fun. You have a great time and you keep on keeping on. Blessings Jackie Hi, I'm new.>> 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>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2009 Report Share Posted July 24, 2009 There is a ton of info in our archives; just type in a topic such as Cellcept in the search box. You may have to sort through a lot of messages & some repetition, so be patient. Darlene has been cleaning out the messages, but it's a slow process & she's had more than her share of health issues to deal with. The Neurosarcoidosis Community links appear at the bottom of all the emails that we get from the group-- but for a few of you-- maybe the "Mac" users-- it doesn't come through-- so here it is again. This is exactly what you'd see if you scroll down-- even on this one-- it'll follow this section-- and repeat itself-- Please bookmark or add these addresses to your "favorites". The Neurosarcoidosis CommunityCHATROOM LINK: http://www.sarcbuddies.com -- Open all the time..... Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
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