Desperately seeking advice...

[Guest guest]

Hi all,

I am new to the list. We are quite desperate, and need any advice you can

give us. I'm writing on behalf of my 26-year-old daughter, who has been too

sick to use a computer for several months. Can you please tell me if you

think, based on her symptoms, that she might have Chiari I malformation?

She is so weak that she can walk only a few steps, can feed herself only a

few bites, can speak only rarely and then only a few words at a time. She

has not been able to leave the house for a year. Her doctor wants her to

have an MRI but she's afraid that the exertion of going to have it, coupled

with the noise, would leave her unable to even swallow. We've sent her

three-year-old MRIs to a neurosurgeon at s Hopkins, and will call him

next week.

She has been diagnosed with postural orthostatic tachycardia syndroome,

neurally mediated hypotension and chronic fatigue syndrome. The first two

diagnoses fit, but CFS doesn't quite fit because she has never had the sore

throats and swollen lymph nodes typical of CFS. We've never heard of anyone

with POTS and NMH being as sick as she is.

She also doesn't quite fit the Chiari symptom list, because she rarely has

headaches. Her fatigue, however, is beyond belief.

She was a happy, healthy college student when she collapsed after jogging

during a heat wave, five years ago. Since then, she has gotten

progressively worse.

Below I'll list some unusual symptoms she has. I figure people on this list

know a lot about the brain and I hope someone can tell us something that

will help us understand these symptoms.

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On the day of onset, June 18 1994, she began hearing an occasional " click "

in the back of her head. The click finally subsided, three or four years

later.

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Also, since onset she " recedes from consciousness " several times a day. Her

eyelids flutter and her eyes roll back in her head. Her doctor says these

episodes are not seizures.

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Also, at onset her kidneys were not concentrating her urine. One of her

doctors thinks it's because her pituitary was not working right.

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Her hyperacusis began in July 1997, immediately after exposure to a

jackhammer. She put her hand on the back of her head and told us,

" Something terrible has happened in there. " An audiologist who specializes

in treating hyperacusis measured her sound tolerance at 15 dB in one ear,

20 in the other--i.e., she couldn't tolerate any noise above a whisper. Her

hyperacusis has improved quite a bit since then with modified tinnitus

retraining therapy.

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In the fall of 1997 she was in a study (since published) by Dr. Bell and

Streeten, M.D., Syracuse University, that linked extremely low blood

volume to CFS. Dr. Streeten diagnosed her orthostatic intolerance, and

prescribed a Jobst garment. She tried Florinef for three months with no

response.

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In spring 1998, she began a three-month period where she couldn't chew and

needed to have all of her food puréed. Sometimes she couldn't get her

facial muscles to work, couldn't make facial expressions.

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Since August 1998 she has had difficulty speaking, and sometimes writing.

Sometimes she can speak for up to 30 seconds, if I am pumping her legs.

Usually she can speak for only two or three seconds at a time.

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Sometimes her weakness is one-sided. Sometimes one foot drags when she walks.

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She was hit by a car and knocked unconscious when she was 10.

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Sue B.

desperate for advice in upstate New York