Getting Attention

May 29, 2006

Ruth, A nurse at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all

night and exhausted all day the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this. Eileen

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May 29, 2006

I agree that it is hard to reach out for help. I had Sarcoid for

probably eight years before I started telling anyone. Everyone

thought I was staying home to take care of my husband - which was

mostly true but I on disability also. It was only when the neuro

symptoms started that I really stated explaining the illness. I was

truely amazed at the support I have received. It has touhed my

heart a great deal.

At the end of the day we just have believe that we did the best we

could that day.

TTFN

Ruth

-- In Neurosarcoidosis , Eileen Mac

wrote:

>

> Ruth,

> A nurse at one of the hospitals in this town has CIDP (Chronic

Inflammatory Demyelinating Polyneuropathy). Our local newspaper

recently ran a whole page on her and her disease. How hard it was

for her to work, Find a diagnosis, treatment, good doctors, etc.

They talked about how rare the disease was and how expensive it is

to treat and how pharmaceutical companies don't target much money

for diseases such as this. But a lot of the article was about how

hard life is for her. I was diagnosed with CIDP before NS. I had

all the expensive treatments that went along with it. I had IVIG

that cost $28,000 per month and required missing a week of work out

of each month. So I had to use my vacation and all my sick time. I

had Plasmapheresis in the evenings. I had a Quintin Catheter placed.

(A large IV put in a large vein close to the heart) I had this done

for five hours every other evening. I worked all day, had the

treatment, was sick all night and exhausted all day the next

> day. Then I got Sepsis (a blood infection ) and they had to

remove the catheter. All this was after Immuran, Cytoxin, I can't

even remember all the other drugs. Thank goodness. the drugs for

CIDP and NS are a lot alike. Anyway at that point they biopsied some

nerves and found the NS. Now I worked at another one of the hopitals

in town and when I left they only knew that I left because of

illness. So, I think sometimes we don't think of helping ourselves.

We just go off and take care of ourselves without mustering all the

resouces available. It took me along long time to even join a group

such as this.

> Eileen

>

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

> Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger

with Voice.

>

May 29, 2006