Re: How long did you disease take to show itself?

[Guest guest]

I am working backwards on my emails, so many, so will start here. I have a kind of funny beginning, if there is anything funny about NS. I am a RN and was working at the time the night shift In Labor and delivery at the hospital, and kept having this cough, one of the nurses kept telling me I had Kennel cough and should see a Vet. I just blew it off, but it got so bad it would wake me up, just a dry irritating cough, so I went to my doctor, who sent me to a pulmonologist, (however, I had been dx with Sarcoid about 3-4 months prior, by an enlarged cervical lymph node, that thought I first I might have lymphoma, so it was a relief to all that it was " just " Sarcoid, and I most likely will never have symptoms or trouble with it. thus the 4 months later, cough, Prednisone tx, it went away, then for almost a year I think, no problems, then trouble breathing, short of breath all the time, so this was when all the tests started, for weeks, when finally he realized that my O2 levels would drop into the 70's with just walking, and decided to treat me, more steroids. then was OK again for awhile. I don't really remember the time frames that well. I was dx in 1994, but in 2001 it hit me and I have been on some type of medications with some troubles, breathing, then skin rash all over, then neuro, and it's been up and down since then. I left nursing 2003. Now I walk with a cane and use a wheelchair for any distance walking, and other neuro sx's, and I've been on Methotrexate for 5 years, Plaquanil for 6 years, 3 years of steroids, etc.....

Now today after many appeals to my insurance company, I got my first dose of Remicade! But not matter what you goes through with this uncharted waters, there is always " HOPE " , always, Marla

For those of you that have been diagnosed, what was the progression of

your disease? Did it come on slow, or hit you all of a sudden? How

long before you knew some out of the ordinary was wrong?

-- Marla Bramer Independent Beauty Consultant Kaymbramer@... www.marykay.com

'I know the plans I have for you, declared the Lord, 'plans to prosper you and not to harm you; Plans to give you a future and a hope

[Guest guest]

That is a good question....reading everybody else's posts, I had to think about it. I just got diagnosed in Jan. of this year. But, thinking back..I have been sick for a while (I think anyways). I was diagnosed with Pseudotumor Cerebri with papilledema in December of 2000. I had terrible headaches, and ended up having that diagnosis after my neuro did a spinal tap (only way to diagnose it). My opening pressure of CSF was 280, which is very high. So, I had what they call "thereputic taps" to continue to relieve pressure...they didn't feel I was a good candidate for a shunt, so that's what they did. It eventually got better by Sept. of 2001, but have been having bad headaches again for the last 6-8 months. So, they did another tap on me in Jan. of this

year, which lead up to the NS diagnosis, along with the biopsy. So, Im not sure how far back mine goes. This is all so new to me, that I probably have been sick for a while and don't realize how much of it has been NS related. Otherwise, I didn't show any symptoms until my facial palsy in December of 2007. Hope that helps. If you have any more questions, please just let me know!

Christy

Subject: How long did you disease take to show itself?To: Neurosarcoidosis Date: Wednesday, June 11, 2008, 10:44 AM

For those of you that have been diagnosed, what was the progression of your disease? Did it come on slow, or hit you all of a sudden? How long before you knew some out of the ordinary was wrong?