Re: My mom needs help

April 20, 2011

Maybe ask about Remicaid, Cellcept, Immuran, or Methotrexate//They are pred sparers I believe

To: Neurosarcoidosis Sent: Wed, April 20, 2011 7:36:09 PMSubject: My mom needs help

Hi everyone, I am new to the group. I do not have neurosarcoidosis, however, my mother does. She went undiagnosed for 10 years. It started with double vision in 1999. Then went to 6 nerve palsey in the other eye. Then went to not being able to raise her arms above her shoulders and weakness in her legs. She had several bouts of encephalitis. In 2006, she collapsed on Christmas morning due to hydrocephalus, and had to have a shunt put in her brain due to the left ventricle collapsing, still at this point, undiagnosed. In 2009, she had a spinal tap done for the 3rd time, and found she had chronic meningitis, and her neurologist sent her to see her neuro-surgeon for a possible brain biopsy. That was scheduled in December 2009, and was diagnosed as neurosarcoidosis. She was immediately started on prednisone and the doses started to get higher, but she could not tolerate the higher levels. After 17 months of being on prednisone, a dr in Birmingham

suggested she try chemo(cyclophosphamide). She has had 2 rounds of that, and is doing terrible. Back in March, she started the chemo and was also on coumadin for a blood clot in her leg, and she started to bleed out(nose, mouth, bladder) and was sent to the hospital. She was in for a week to reverse the effects of the coumadin, and I couldn't believe they were sending her home. She was in no way, shape, or form to be going home. So for the next week, she deteriorated, and wouldn't eat or drink and only slept. We took her to her GP and she admitted her to the hospital for observation. She ended up having chronic meningitis again. She is now at home on hospice care with no meds to suppress her neurosarcoidosis, and I am at my wit's end!! I don't think my step-father wants to get her any better. Btw, she was sent home with hospice because her GP thought she would receive better rehabilitation with hospice instead of home health care. Does anyone have any

suggestions about any meds?? I'm thinking she may have to go back on prednisone. Please help. Thx

April 21, 2011

Welcome, I'm sorry your Mom is so sick and has had such a difficult time. There are many more choices out there, I'm sure there worried about suppressing her immune system because she ends up with the encephalitis, but if they don't use something to suppress it, she will just get worse.

Has see seen a Sarcoid Specialist? She needs to. Rehabilitation is important, but doesn't matter if she continues to get worse. Where do you live? Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb

Hi everyone, I am new to the group. I do not have neurosarcoidosis, however, my mother does. She went undiagnosed for 10 years. It started with double vision in 1999. Then went to 6 nerve palsey in the other eye. Then went to not being able to raise her arms above her shoulders and weakness in her legs. She had several bouts of encephalitis. In 2006, she collapsed on Christmas morning due to hydrocephalus, and had to have a shunt put in her brain due to the left ventricle collapsing, still at this point, undiagnosed. In 2009, she had a spinal tap done for the 3rd time, and found she had chronic meningitis, and her neurologist sent her to see her neuro-surgeon for a possible brain biopsy. That was scheduled in December 2009, and was diagnosed as neurosarcoidosis. She was immediately started on prednisone and the doses started to get higher, but she could not tolerate the higher levels. After 17 months of being on prednisone, a dr in Birmingham suggested she try chemo(cyclophosphamide). She has had 2 rounds of that, and is doing terrible. Back in March, she started the chemo and was also on coumadin for a blood clot in her leg, and she started to bleed out(nose, mouth, bladder) and was sent to the hospital. She was in for a week to reverse the effects of the coumadin, and I couldn't believe they were sending her home. She was in no way, shape, or form to be going home. So for the next week, she deteriorated, and wouldn't eat or drink and only slept. We took her to her GP and she admitted her to the hospital for observation. She ended up having chronic meningitis again. She is now at home on hospice care with no meds to suppress her neurosarcoidosis, and I am at my wit's end!! I don't think my step-father wants to get her any better. Btw, she was sent home with hospice because her GP thought she would receive better rehabilitation with hospice instead of home health care. Does anyone have any suggestions about any meds?? I'm thinking she may have to go back on prednisone. Please help. Thx

April 21, 2011

Just to confirm, Imuran and Methotrexate are definitely steroid sparing

medications, and pretty sure the other two fall in that category as well ...

>

> Maybe ask about Remicaid, Cellcept, Immuran, or Methotrexate//They are pred

sparers I believe

>

> To: Neurosarcoidosis

> Sent: Wed, April 20, 2011 7:36:09 PM

> Subject: My mom needs help

>

> Hi everyone, I am new to the group. I do not have neurosarcoidosis, however,

my mother does. She went undiagnosed for 10 years. It started with double vision

in 1999. Then went to 6 nerve palsey in the other eye. Then went to not being

able to raise her arms above her shoulders and weakness in her legs. She had

several bouts of encephalitis. In 2006, she collapsed on Christmas morning due

to hydrocephalus, and had to have a shunt put in her brain due to the left

ventricle collapsing, still at this point, undiagnosed. In 2009, she had a

spinal tap done for the 3rd time, and found she had chronic meningitis, and her

neurologist sent her to see her neuro-surgeon for a possible brain biopsy. That

was scheduled in December 2009, and was diagnosed as neurosarcoidosis. She was

immediately started on prednisone and the doses started to get higher, but she

could not tolerate the higher levels. After 17 months of being on prednisone, a

dr in Birmingham suggested she try chemo(cyclophosphamide). She has had 2 rounds

of that, and is doing terrible. Back in March, she started the chemo and was

also on coumadin for a blood clot in her leg, and she started to bleed out(nose,

mouth, bladder) and was sent to the hospital. She was in for a week to reverse

the effects of the coumadin, and I couldn't believe they were sending her home.

She was in no way, shape, or form to be going home. So for the next week, she

deteriorated, and wouldn't eat or drink and only slept. We took her to her GP

and she admitted her to the hospital for observation. She ended up having

chronic meningitis again. She is now at home on hospice care with no meds to

suppress her neurosarcoidosis, and I am at my wit's end!! I don't think my

step-father wants to get her any better. Btw, she was sent home with hospice

because her GP thought she would receive better rehabilitation with hospice

instead of home health care. Does anyone have any suggestions about any meds??

I'm thinking she may have to go back on prednisone. Please help. Thx

>

April 22, 2011

First off I want to thank you for your dedication to your mother's health. We in

this group understand probably better than anyone how challenging, how

frustrating, how frightening this is. Do you mind answering some questions, is

it Libby? What is your mom's age? I take it she lives in or near Birmingham,

AL. You mention a neurologist & a neurosurgeon; are they associated with a

medical center? Have you met any of her docs yourself? If you live nearby, would

it be possible for you to accompany your mom to a doctor's visit? If so, I'll

give you some suggestions for the next visit; I imagine other group members will

also have input. You don't seem to feel that your stepfather is interested in

helping your mom's health improve. Are there other family or friends nearby that

can learn how to advocate for your mom? This is a crucial step. Try to think of

neighbors, church family, etc. Even if you live close & can do some of this for

your mom, it's mentally, physically & emotionally exhausting. Ideally you will

have a team to tackle all the issues--research, transportation, advocating

directly at dr. appts as well as follow-ups (labs & other testing; f/u appts;

referrals; insurance issues; getting & organizing copies of medical records;

many more things). Do you believe that her medical team is up-to-date on current

sarc research & treatment options? If not, or if you are unsure, a great

resouurce for info as well as support is FSR (Foundation for Sarc. Research),

www.stopsarcoidosis.org. This site includes the latest studies from all over the

world, treatment options, online support & info on local support groups, links

to other resources. Obviously this is time-consuming; Team Mom is almost

essential unless you or someone else can devote full time to it. I don't want to

overwhelm you, but to help you see the benefit in getting others onboard, to

assess each one's strengths. If you can let us know where your mom lives & the

medical care she's accessed so far, we can help with suggestions for higher

levels of care. Don't be afraid of " complaining. " being honest about your

feelings, as well as your mom's, stepdad's & other loved ones. We know how you

may be feeling & we want to be that soft place to fall if you need it. Now you

know why my nickname is Ramblin' Rose! So just jump in & let us know what we can

do to help. We'd also like to invite you & your mom to join us tonight, Friday

night, at 9pm EDT in our chatroom. A reminder went out Thurs. with the chat

link, and it should go out again this evening (if I set it correctly!), so we'd

love to have you come along. Some are able to stay just awhile, others 2+ hours.

We talk about how to battle & defeat the " sarc monster, " some share brownie

recipes; it's great fun & informational to boot! Whew, I'm tired. It's 5am here

in Indiana, I'm hoping my pain pills will kick in for my back & leg pain pretty

soon. Hope you can make it tonight!

My mom needs help

Hi everyone, I am new to the group. I do not have neurosarcoidosis, however, my

mother does. She went undiagnosed for 10 years. It started with double vision in

1999. Then went to 6 nerve palsey in the other eye. Then went to not being able

to raise her arms above her shoulders and weakness in her legs. She had several

bouts of encephalitis. In 2006, she collapsed on Christmas morning due to

hydrocephalus, and had to have a shunt put in her brain due to the left