back again

[Guest guest]

Dear Friends,

Today, I have finished 1 year of strugling with the sarc monster again.

In februari 2005 I delivered a wonderful baby boy but after 6 month

the sarcoidosis came back 3 times harder then before.

I went to the academic hospital nearly every week but now we are sure

that the diagnosis is complete. I have lung, eye and neurosarcoidosis

since 2001, it definitely started with the meningitis and since today

the doctors confirmed the diagnosis small fiber neuropathy. I receive

amitriptyline to minimize the neurological pain in my feet and hands.

In the comming months I will start with a trial with several

sarcoidosis patients to find new answers in the treatment of small

fiber neuropathy in neurosarcoidosis. Especially possible new

medications against the terrible fatique with sarcoidosis.

For all the new members of our group, welcome. For all the old folks,

I reopened the daily email to my acount again... hopefully I can read

the messenges more frequent than I did the last months...

Take care,

A big hug from the Netherlands again,

Yvonne

[Guest guest]

Oh, Yvonne, I'm so glad to hear from you, but so sorry to hear of your relapse. I don't think you ever posted a picture of that darling baby, did you?

I'll be lifting you up in prayer, for your daily struggles and for the research group. Please try to share any information you get about the treatments being used. I also have small nerve fiber neuropathy. I take Cymbalta & Lyrica for the neuropathic pain in my feet. I haven't taken Amitriptyline, but I took something similar. Can't remember the name now; it made me too drowsy. I hope you get relief soon. I'm especially interested in any new treatments for fatigue. Even the docs at the sarc clinic I'm attending now don't seem to take the fatigue very seriously.

Is your shunt working okay now?

I still have the beautiful Christmas cards you sent; I have often taken out the cards that were sent. I kept them all. It's kind of died off (the holiday cards); I'd like to revive it this year. Maybe with so many new members we can get it done.

Yvonne, let us know how things are going. The best of everything for you & your family.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: back againDate: Thu, 24 Aug 2006 21:23:04 -0000

Dear Friends,Today, I have finished 1 year of strugling with the sarc monster again.In februari 2005 I delivered a wonderful baby boy but after 6 monththe sarcoidosis came back 3 times harder then before.I went to the academic hospital nearly every week but now we are surethat the diagnosis is complete. I have lung, eye and neurosarcoidosissince 2001, it definitely started with the meningitis and since todaythe doctors confirmed the diagnosis small fiber neuropathy. I receiveamitriptyline to minimize the neurological pain in my feet and hands.In the comming months I will start with a trial with severalsarcoidosis patients to find new answers in the treatment of smallfiber neuropathy in neurosarcoidosis. Especially possible newmedications against the terrible fatique with sarcoidosis.For all the new members of our group, welcome. For all the old folks,I reopened the daily email to my acount again... hopefully I can readthe messenges more frequent than I did the last months...Take care,A big hug from the Netherlands again,Yvonne

Check the weather nationwide with MSN Search: Try it now!