New to the Group!

July 23, 2007

Hey everyone, well I'm new here and I am supporting my aunt who has

been diagnosed with neurosarcoidosis December 2006. This has been a

horrible experience for all involved in our family, but most

especially my aunt. She called me just before Halloween; barely able

to speak...she was trying to ask me that if I wasn't busy the next

day if I could take her to see a doctor. I was so overly concerned

with not being able to understand her, I sent my mother over to her

house to relay the message to me. When my mother arrived, she was

also unable to understand what her sister was trying to say to her,

and called 911 suspecting she had had a stroke. Bear in mind my aunt

is about 375 lbs or so, and only 41 years old. The only thing I

could think was wrong is she must've eaten something she is allergic

to and her tongue is swollen, or possibly having a Bell's palsy

episode of some kind.

So they get her to the hospital; right away we find out she is

diabetic. She had probably been living with it for some time, since

we saw a pattern with her leaving after every meal we had at a

birthday party. She had started complaining about throwing up a lot

and getting up at all hours feeling sick. She has a MRI done; she has

had 6 strokes they suspect probably from the diabetes. Okay, so

insulin starts and this goes for 2 months, she is having strokes

still by now about 14 in total but the Dr's say that is the least of

her worries...

MRI scans show the granulomas all over her insides, and start

the prednisone. She is taking I believe they say 700 mg a day. At

this time they start asking neurologist to take a look because she is

losing motor skills fast. They have ruled out neurological damage

from stroke and request a spinal tap to be done. They need to rule

out so many things before they decide what they are dealing with (TB

was one of them). So after a while with the prednisone, she's

looking better, starting to eat solid (well almost solid) foods and

getting speech back but still no word about what is really going on

with her.

The neurologist needs to get a second opinion, but finally makes

us aware she has sarcoidosis. They are going to start radiation

because the prednisone isn't doing the job any longer. She gets

MRI's after this and there are granulomas all over her brain as

well. This is devastating news for all of us. Her neurologist says

it is so chronic, this will be her life saving step. If the

radiation and chemotherapy doesn't work there is nothing else for

her.

My aunt has lived all her life not having any health issues that

we knew of; she is single only having a cat to talk to. She was

super overweight but the nicest person nevertheless. She had 8

nieces and nephews and adores each one. She was released from the

hospital after being there for 5 months; she has had her radiation

treatments and chemotherapy. They sent her to a nursing home. She

has given up hope, not wanting to do any physical therapy she has

been bed ridden since October 2006. I can only pray that she doesn't

die from this, because the Dr's aren't scheduling another MRI to see

how the therapy is affecting her brain. I believe, from what I

understand that since she isn't showing signs of improvement she must

not be improving. Now she doesn't want to feed herself so they have

given her a feeding tube. No one knows what to say to her because

frankly we don't know how she is feeling. Is it the chemotherapy

that has taken every bit of energy from her body? Is it the loss of

will power keeping her from recovering, or is it so far into her

illness left untreated that is going to leave us devastated by her

untimely death?

We are looking for someone to give her a bit of hope, someone who

is going through the same thing as she. We know so little of

neurosarcoidosis, we are no one to try and relate to how she feels.

She will read a letter, but doesn't write back. She doesn't talk on

the phone, and has no access to a computer. But I think I have found

a way to give her some hope if there is someone here willing to give

her a bit of advice on living with chronic sarcoidosis. If you can

help.

July 23, 2007

Your aunt is blessed to have you looking out for here. It sounds like she is in such serious shape.

I only know of one other person that went thru the radition to get control of the NS, and I know she did well for several years even after that process.

As far as what is wiping out your aunts energy, one is the extremely high dose steroids-- as that is surely screwing with her blood sugars also. Her diabetes has to be thru the roof, and so out of control. Steroids also wreck havoc on our emotions, and all our hormones. So the depression and her desire to give up is not unusual, but needs to be addressed, quickly. Many of us had to give up on the prednisone because of the psychosis that you can develop.

I am surprised that they've not put her on Cytoxan- that is the one drug that will cross the blood/brain barrier, and hopefully slow down the Neurosarc. There are other choices, Remicade, Enbrel, Humira, Imuran, Methotrexate and Arava, as well as others, but for the immediacy of her situation, I would think they'd pull out the Cytoxan.

Many of us have had sarcoidosis for many years. I've started with pulmonary and ocular sarcoidosis 17 yrs ago, and with prednisone we got it into remission for 5 yrs. It was only 7 yrs ago that it came back, systemically.

I did give up my job, as at that time, I couldn't think, my problem solving skills went out the window, the exhaustion and fatigue where way way beyond anything you could imagine, and my short-term memory went.

I went thru a clinical trial for Remicade, after having run the gamet with some of the others. We finally got a cocktail of Remicade, Methotrexate and Plaquenil. That has taken away a lot of the inside the bone pain, the sarcoidosis induced arthritis, and I am not having to use my oxygen 24/7 now. I can also still get out with friends and although I do have to pace myself, I'm still active.

My short-term memory problem is better, and I've learned to accommodate the problems by parking outside the mall in a regular area, so that I don't have to travel to far to find the car.

Sarcoidosis doesn't have to be a death certificate. It will take time to get the monster under control, and I know your aunt is going to have an uphill battle for a while, but she will have a group of 500 people pulling and praying for her. Just as we are for each and every member.

In our ARCHIVES and LINKS (scroll down, the address will be at the bottom of the emails) and you can print out articles to share with her MD's.

Here is a fantastic article on Epilepsy and Sarcoidosis.

http://professionals.epilepsy.com/page/inflammatory_sardcoidosis.html

Go also to FSR--Foundation for Sarcoidosis Research. www.stopsarcoidosis.org.

Tell your aunt that there is no giving up, we'll be waiting for her to be able to get online herself and tell us of her journey. In the meantime, know that we will help you in any way we can-- questions, answers, research, whatever-- and again, thank you for being there for your Aunt.

Sincerely,

Tracie

NS Co-owner/moderator

Get a sneak peek of the all-new AOL.com.

July 24, 2007

Tracie, another thing that occurred to me is what type of radiation did they do & where? It doesn't sound like the full-body radiation, so I'm wondering if she got enough radiation to do any good anyway.

Ramblin' Rose

Moderator

From: tiodaat@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: New to the Group!Date: Tue, 24 Jul 2007 01:37:25 EDT