New here referred by Wollard

[Guest guest]

I have Neurosarcoidosis allow me to introduce myself- I am Irene. I

am 48 years old originally from Long Island New York and now a

resident of North Carolina. I was diagnoised with Neurosarcoidosis in

1994 after having been sick since 1989 and tested with MRI's, CT

Scans, all kinds of testing of blood and spinal taps, twice they did

a muscle biopsy on my left bicep and my left leg and combined with

the constantly elevated ACE Level in my blood determined that I have

Neurosarcoidosis. I have NO lung involvement which they thought was

very unusual, however with scans and sonograms they have found

sarcoids in my liver, kidneys and several other " vital " organs. They

wanted to do a lacrimal gland biopsy on my eye and I refused. (I have

left optic neuropathy)I flunked the posturography studies, have poor

balance and insideous pain in the strangest places at times. Bone,

joint and muscle pains and muscle " ticks " on and off. Basically they

had given me various meds including seizure medications but I stopped

taking everything except Tylonol about three years ago- none if it

was making me feel any better and the seizure meds made me exausted

all the time. Does anyone else have a constant low grade fever? I

have had a low grade fever of 99.8-100.6 since 1989!! I get brutal

migraine headaches about 6-8 times a year and I do take Fiorinal for

them if I cant get the Tylonol to ease the pain. I am allergic to any

asprin dirivative so no NISADS for me I had been told by various

MD's that I couldnt have Neurosarcoidosis because I am white and " it

is a black diesase " , just goes to show you how much they know!! In

case you haven't figured it out yet I have virtually no faith in the

medical profession anymore and have decided to leave my fate in the

hands of God. I am married and my husband Steve is 54. He was

diagnoised with Multiple Sclerosis in July 1989- the same time I was

getting sick-talk about a double whammy!! For years I was told by

various Dr's that it was " all in my head " and put on anti depressants

until they finally decided to start doing actual testing in 1992 and

and started getting all kinds of abnormal results, the neurologist in

NY gave me the diagnosis in 94. I have only gone to the Dr here one

time and it was a regular MD- I have serious health insurance issues-

it cost ME out of pocket $680 for a visit with bloodwork- the

insurance company paid a whopping $75 dollars. Anyway she wanted me

to follow up with a Neurologist here in NC, but I just dont have that

kind of money. My ACE level in November was at 120 which is the

lowest it has ever been since the begining when it was at 240-it has

been higher at times, does anyone know what " normal " ACE level is???

I would love to hear from others on how they were diagnoised and what

they have done to deal with the pain and the multitude of symptoms

without anti-inflamatory drugs. Also is there anyone else in North

Carolina?