Re: ,,I'm looking for you

[Guest guest]

Thanks so much ,,,,I just need to know what to say to him,,,and

remember, I am not really in any pain,,,just tremendous

pressure,,and the crackly thing going on. I just don't want this to

get to be another painful thing in my life,,,

Also, great to finally meet you too. I am seeing some of your pics

and have yet to get mine to the store. need to do that. Among other

things too

Thanks for the info

Lynne

> Hi Lynne!

> Long time no see! It was so good to finally meet you! I

had an MRI

> of the brain which did not show any evidence of sarcoidosis, and I

actually

> had to go 18 months with my headaches getting worse and worse

before I went to

> an ER, had a slightly elevated temp, and the ER doc did the spinal

tap. I had

> been blown off by the neurologist as " depressed. " Afterall, my MRI

was

> negative. Well, neurosarc doesn't always show on an MRI. They

found an aseptic

> meningitis with elevated white cells and lymphocytes. They also

had to rule out any

> infectious disease, such as TB causing it. I also had an elevated

Igg

> synthesis, + oligoclonal bodies (usually + in Multiple Sclerosis),

and some other

> minor changes. I also had an elevated " opening pressure " which is

a sign that you

> have some scarring of the membrane of the brain which causes you

to keep too

> much fluid in your head and spinal compartment. You can actually

develop

> hydrocephalus (water on the brain) if it is left untreated.

Sometimes it requires a

> shunt to be placed to relieve the pressure.

> From the headaches you were describing at the

conference, they

> sound very similar to what I experience. They do not get better on

their own,

> and actually worsen. I had pain all the way down my spine before

they found it.

> I would tell your doctor that he needs to do some other testing,

and let him

> know you met someone at the conference who had a negative MRI,

and the spinal

> tap was what diagnosed the meningitis. You also might search for

some of Dr.

> Baughman's articles on the internet with the words " neurosarcoid

meningitis

> and Baughman MD. "

> I would also make it clear that you would like to

find a cause

> for the severe pain you are having, and he needs to start treating

your pain

> seriously! You also talked with Dr. Baughman briefly, have your

doc e-mail or

> call him, and let Dr. B. tell him what testing is appropriate, and

how

> disabling and painful this illness can be.

> Hope this helps, feel free to ask any more questions.

I will

> keep you in my prayers!

>

>

Hugs,

>