little update

[Guest guest]

Dear Friends,

The last view months we're very busy for my.

Every single week I went to the academic hospital in the south of the

Netherlands (150 miles up and 150 miles down...)

But now we have the results.

I still have neurosarcoidosis, the granulomas meningitis in 2001 were

the first symptoms of the sarcmonster and now I 'm diagnosed with

small fiber neuropathy too.

I will never work as a cardiac nurse again... I can not write anymore

and my memories are worse.

The doctors told my finally that I can not working anymore. The

complications of my neurosarcoidosis are bad. On this moment they try

to find good medication but now I only use pain medication.

In December I will get the answers of my skin biopt, the doctors will

count the nerves in this biopt,

if they are still there...LOL...because I don't feel my feet and

fingers anymore...

Have a good holiday season. Here in the Netherlands we celebrate on

the 5th of December Sinterklaas, with a lot of presents for the

children. My lovely boy (1 year old now) and my daughter (7 years) are

enthusiastic for it.

A big hug from the Netherlands,

Yvonne

[Guest guest]

Yvonne,

Small nerve fiber neuropathy can be treated with Plaquenil, Methotrexate, Imuran, Arava or Enbrel, Humira and Remicade.

I am on Plaquenil, MTX, and Remicade.

I've found that my neuropathy is much worse if I get the least bit dehydrated, and if my bloodsugar gets out of sync.

Neurontin is another medication that helps the neuropathy.

I know how frustrating it is to lose our jobs and careers. I went thru that 5 yrs ago. It's like losing a part of our very identity. I'm so glad that you have the kids-- and can share time with them. I know that being home full time takes adjustment-- but to get rid of some of the stress will help.

Take care,

Tracie

NS Co-owner/moderator

[Guest guest]

Thanks Becky !

Blessings too,

Yvonne

Dear Friends,

>

> The last view months we're very busy for my.

> Every single week I went to the academic hospital in the south of the

> Netherlands (150 miles up and 150 miles down...)

> But now we have the results.

> I still have neurosarcoidosis, the granulomas meningitis in 2001 were

> the first symptoms of the sarcmonster and now I 'm diagnosed with

> small fiber neuropathy too.

> I will never work as a cardiac nurse again... I can not write anymore

> and my memories are worse.

> The doctors told my finally that I can not working anymore. The

> complications of my neurosarcoidosis are bad. On this moment they try

> to find good medication but now I only use pain medication.

> In December I will get the answers of my skin biopt, the doctors will

> count the nerves in this biopt,

> if they are still there...LOL...because I don't feel my feet and

> fingers anymore...

>

> Have a good holiday season. Here in the Netherlands we celebrate on

> the 5th of December Sinterklaas, with a lot of presents for the

> children. My lovely boy (1 year old now) and my daughter (7 years) are

> enthusiastic for it.

>

> A big hug from the Netherlands,

>

> Yvonne

>

>

>

>

>

>

>

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

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>

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>

[Guest guest]

Dear Tracie,

I'm on amitriptyline as pain medication (off course I'm not having a

depression).

May be I will be on MTX in a couple of months. I have heard about the

medication you use, but those are not regularly prescribed over here, yet.

Indeed dehydration will make things worse especially because I also

have a lumboperitonial shunt because of the high liquor pressure

resulting of the granulomas meningitis as type of my neurosarcoidosis.

Take care and off course a big hug from the Netherlands,

Yvonne

>

> Yvonne,

> Small nerve fiber neuropathy can be treated with Plaquenil,

Methotrexate,

> Imuran, Arava or Enbrel, Humira and Remicade.

> I am on Plaquenil, MTX, and Remicade.

> I've found that my neuropathy is much worse if I get the least bit

> dehydrated, and if my bloodsugar gets out of sync.

> Neurontin is another medication that helps the neuropathy.

> I know how frustrating it is to lose our jobs and careers. I went

thru that

> 5 yrs ago. It's like losing a part of our very identity. I'm so

glad that

> you have the kids-- and can share time with them. I know that being

home full

> time takes adjustment-- but to get rid of some of the stress will help.

> Take care,

> Tracie

> NS Co-owner/moderator

>

[Guest guest]

Yvonne,

Your story sounds only too familiar, I was once a Labor and

Delivery nurse, it was my dream job, and I loved it, had to leave the hospital

twice, I think my last time will be the last time. You will hear this story

from others as well, funny how many nurses there are with Sarc.

I am sorry to hear your story, but know you have found a

wonderful, blessed family here, enjoy your children they grow up so fast, mine

our 21, 18, and 11.

Blessings,

Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of ytvv342002

Sent: Monday, November 27, 2006

3:25 AM

To: Neurosarcoidosis

Subject: little

update

Dear Friends,

The last view months we're very busy for my.

Every single week I went to the academic hospital in the south of the

Netherlands

(150 miles up and 150 miles down...)

But now we have the results.

I still have neurosarcoidosis, the granulomas meningitis in 2001 were

the first symptoms of the sarcmonster and now I 'm diagnosed with

small fiber neuropathy too.

I will never work as a cardiac nurse again... I can not write anymore

and my memories are worse.

The doctors told my finally that I can not working anymore. The

complications of my neurosarcoidosis are bad. On this moment they try

to find good medication but now I only use pain medication.

In December I will get the answers of my skin biopt, the doctors will

count the nerves in this biopt,

if they are still there...LOL...because I don't feel my feet and

fingers anymore...

Have a good holiday season. Here in the Netherlands we celebrate on

the 5th of December Sinterklaas, with a lot of presents for the

children. My lovely boy (1 year old now) and my daughter (7 years) are

enthusiastic for it.

A big hug from the Netherlands,

Yvonne