Re: My husband's illnesses

[Guest guest]

Lyn, it's great that you are already doing the research. With all of 's doctors, is there a PCP (primary care provider) to coordinate visits, help avoid duplication of tests, etc? My brother is in his lates 60's & when he was going to the VA hospital in Houston a few years ago, it was a mess. None of the doctors communicated with each other; he had numerous serious health issues & it was very difficult for him to get to the hospital. Yet nobody tried to coordinate visits or anything else to help him. I live in Indiana & would get so frustrated at being out of the loop. Once he was old enough for SS & Medicare, he switched to private care & it's been much better. I know that the VA facilities are very over-extended, but hopefully if you keep after them, you'll get the care needs.

I'm not familiar with Rituxan; don't recall anyone in the group taking it. Some of the other drugs used for sarc are Imuran, Plaquenil, Remicade, Cytoxin. If you haven't run across FSR (Foundation for Sarcoidosis Research), check it out. They are leaders in sarc research. The website is www.stopsarcoidosis.org. They recently released a video called Faces of Sarcoidosis. You can find it on YouTube. At least 2 of our members are in the video.

It sounds like you have a good support system for both of you. If you check our website, you will find archived messages, links to other organizations & information sources, as well as photos of many of us. Let us know what we can provide for you & .

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

> To: Neurosarcoidosis > Date: Mon, 4 Apr 2011 04:38:25 +0000> Subject: My husband's illnesses> > My husband and I have been doing our own ongoing research and investigation about his illnesses so as to understand "what's going on in his body" for our satisfaction and for SSDI and for his military benefits. He has a "team" of specialists at the VA Hospital that take care of him. Some of the doctors are great and some are mediocre. Our file goes back to in 1991 during the First Gulf War when he first complained about his headaches, stomach aches and neasea in the military. He was diagnosed with all the other illnesses first and Sarc in January. He had a lung biopsy, 4 MRI's, chest XRays, skin biopsy, bone marrow biopsy, eye tests and blood tests. He has almost all of the symptoms you all have. He went through chemotherapy but he's refractory. Retuxin didn't work for him. He is also drug resistant to steroids. He takes pred and just starting on MTX. These drugs have very serious side effects, but he deals with it. He has a great attitude about life. He even started a new hobby last summer--agate hunting. When he is down, he is miserable. He is usually in bed for days. Then he gets better again. His symptoms continue off and on and will continue for the rest of his life. We have great friends supporting and loving us. My family lives in Hawaii and my husband's family doesn't come around us. We're doing well having our friends here. I volunteer at my kids' school and at the foodshelf. I also joined a Stamping Up club. I'm looking forward to summer. I love gardening and landscaping. > > > >> > > > Welcome, Lyn. I'm sorry that you had to find us, but glad that you did. Does that make sense?!? Your husband has really been slammed, hasn't he? Do y'all have a good support system? Do you feel that his medical team knows what they are doing? There are still many doctors who are stuck in old-time thinking about sarc & haven't kept up with the latest research on treatment options. What kind of symtoms is having? What meds is he taking? This is a huge burden for you, of course. Do you have support--family, friends, church family, etc.--who can help you with your younger kids, the house & everything else? I'm sure you are aware that is at risk for depression; in fact, I'd be surprised if he wasn't depressed. You are also at risk for depression; that's why you need a solid base of support for yourself.> > > > > > Ramblin' Rose> > Moderator> > > > "I child-proofed my home and they STILL get in!" (Bumper sticker)> > > > > > > > > > > To: Neurosarcoidosis > > > > > Date: Sun, 3 Apr 2011 20:57:15 +0000> > > Subject: New Member> > > > > > Hello everyone!> > > My name is Lyn Rebro. I am new to the Neurosarcoidosis Yahoo Group. My husband, is a disabled veteran of Desert Shield/Desert Storm who has developed several life threatening diseases including Sarcoidosis, Gulf War Illness (waiting for diagnosis), ITP (blood disease), Irritable Bowel Syndrome and Chronic Fatigue Syndrome. He spends a lot of time at the VA Medical Center in Minneapolis, MN going through various treatments. We have four children ages 18, 9, 7 and 6. I joined this website to site to be a source of strength and to allow you to walk with us on our journey. > > > > > > > > > > > > ------------------------------------> > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~> > > The Neurosarcoidosis Community> > > > > > > > > > > > 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 > > > > > >

[Guest guest]

Thank you Rose for your email. My husband has ITP (blood disease) so he was on

Rituximab or Rituxan for chemotherapy. My husband is very pushy and he will get

on his doctors if they are doing something wrong. He doesn't take no for an

answer. He has a PCP, but only deals with her on occasion. He has specialists

that he deals with because he has several illnesses. We're looking into other

hospitals and doctors because the VA hospital is very slow and is not the

greatest hospital, but for now we have to go there because he has only VA

insurance. Today he was having a very bad day. He was so cranky and pissed about

everybody and everything. I know it's the meds but sometimes I can't handle it.

He disappeared for a few hours and went to do his own thing. He missed our

daughter's Senior banquet tonight, but I was fine with it because I didn't want

him there when he is in a bad mood. Thanks for the links. I have a site on

inspire and stopsarcoidosis.com. I also have a site

http://www.caringbridge.org/visit/lynrebro/journal

Thanks again!

> > >

> > >

> > > Welcome, Lyn. I'm sorry that you had to find us, but glad that you did.

Does that make sense?!? Your husband has really been slammed, hasn't he? Do

y'all have a good support system? Do you feel that his medical team knows what

they are doing? There are still many doctors who are stuck in old-time thinking

about sarc & haven't kept up with the latest research on treatment options. What

kind of symtoms is having? What meds is he taking? This is a huge burden

for you, of course. Do you have support--family, friends, church family,

etc.--who can help you with your younger kids, the house & everything else? I'm

sure you are aware that is at risk for depression; in fact, I'd be

surprised if he wasn't depressed. You are also at risk for depression; that's

why you need a solid base of support for yourself.

> > >

> > >

> > > Ramblin' Rose

> > > Moderator

> > >

> > > " I child-proofed my home and they STILL get in! " (Bumper sticker)

> > >

> > >

> > >

> > >

> > > > To: Neurosarcoidosis

> > > > From: lynrebro@

> > > > Date: Sun, 3 Apr 2011 20:57:15 +0000

> > > > Subject: New Member

> > > >

> > > > Hello everyone!

> > > > My name is Lyn Rebro. I am new to the Neurosarcoidosis Yahoo Group. My

husband, is a disabled veteran of Desert Shield/Desert Storm who has

developed several life threatening diseases including Sarcoidosis, Gulf War

Illness (waiting for diagnosis), ITP (blood disease), Irritable Bowel Syndrome

and Chronic Fatigue Syndrome. He spends a lot of time at the VA Medical Center

in Minneapolis, MN going through various treatments. We have four children ages

18, 9, 7 and 6. I joined this website to site to be a source of strength and to

allow you to walk with us on our journey.

> > > >

> > > >

> > > >

> > > > ------------------------------------

> > > >

> > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~

> > > > The Neurosarcoidosis Community

> > > >

> > > >

> > > >

> > > > 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

> > > >

> > > >