Re: alone

November 24, 2009

" djonesdak "

First let say you are not alone I also have Neurosarcoidosis and have been thru

the mis-diagnoses in fact I was told and treated for Vascular Migraine

headaches.In fact I was first diagnosed with these headaches at approx 3 or 4

years of age. During my teenage years was the worst time for me I missed a lot

of high school.But from 18 to about 20 they tapered off and disappeared. Now in

Apr May of 2008 I was Hospitalized with extreme headaches. And for approx 6

weeks they tried to determine what I had a real scary time for me. For they

threw around Cancer, MS, TB, Lupus and a whole range of scary ones. And when I

went in to the hospital I though the headaches had returned. Well it came down

to Neurosarcoidosis and when they explained it to me it did not seem that scary.

Then it was thought I was in remission as of Aug 2008. So I started working out

again went back to work. I thought I was getting health again. I was even

working 12 hours a day 6 day a week. I was biking 15 miles to work and Home I

went back on all my supplements. I thought heck I got this licked. Then I ended

up laying on the floor of a friends Apartment unable to breath or move (That was

about Nov 2008). I had returned the Neurosarcoidosis and as I keep learning

about this I have learned that I was supercharging my immune system and there in

fact I supercharged the sarcoidosis. At this time I am following what my doctors

tell me to do and I am finding out more and more about this I wonder if I might

have had this for a longer point of time then we think.

I tell you all of this to let you know you are not alone. I know we are rare

in sarcoidosis but we are here. And we do understand. So please we listen and do

please do not feel alone. I know those feelings. I have recently started going

to a Sarcoidosis support group meeting we have here in North Texas. I would

recommended that or if not in your are please use this site the people and

moderators here are beautiful people with large hearts and a large knowledge

base. So for my part I say feel free to come here and share your feelings we

will listen and and respond.

You are not alone.

Greg aka Krumdawg

>

> It has been a long road for me. When I was young I was diagnosed with many

different but Wong mental D/o I spent a lot of time in the hospitals for them. I

know when I was a kid the doctors were guessing. As I got older the symptoms

grew but were unexplained. Doctors were then leaning to the suto side of things

then I stared with the seizures. It took an intense year of seizures and the

very large brain lesions to finally come up with Neurosarcoidosis. The time that

has passed I feel has hampered my life I feel different even different from the

rest of those who suffer from this I was told I was apart of the 5% that get

sarcoid apart of the 1% that get the neurosarcoidosis and .1% that only get

neurosarcoid. I feel alone because of this no one can relate I'm in remission

now but I know it will strike again worse than before it is how the history of

time has always been. I just need to share this it has been wrapped up in me

haunting me angering me, thanks for listening.

>

November 24, 2009

Hi ,

I am one of the .1% also. My road to diagnosis was not incredibly long once

they really started looking. For years I was told that nothing was wrong but

after being hospitalized for a seziure and being unsteady they came up with a

short list of possible diagnosises.I was the one in denial despite the fact that

my mother had the same diagnosis after being treated for cancer and other wrong

diagnosises. It was many years before my mother had organ involvment outside of

the nervous system and they have yet to confirm any cardiac or pulmonary

involvment in me. I have had arrythmia issues since infancy.They thought I had

an atypical case of MS for a short time even though the MRI never looked

consistent for MS or responded to treatment like MS does.I sometimes felt like a

lab rat when seeing the docs.I actually statrted feeling better when one of my

docs admitted he was baffled. Your not alone we may be few but we do exist.