question

[Guest guest]

Hi ,

I saw that Kathleen answered the " acquired " part of your question. I'll tell

you about the " Tilt Table Test " part.

Both my kids had TTT's done at s Hopkins back in Feb. of 1999 to determine

if they had a condition called " Neurally Mediated Hypotension " . It's a form of

low-blood pressure that is triggered by physical or emotional stress that causes

such debilitating symptoms as headaches, neck pain, extreme fatigue, sleep

disturbances, cold hands/feet, cognitive impairment, memory loss, malaise,

depression/anxiety and body temperature irregularities. They had both been

diagnosed as having Chronic Fatigue Syndrome prior to the Tilt Table Tests.

After both my children tested positive for NMH my daughter had MRI's done to see

if she had Chiari. She does have both a mild Chiari and syringomyelia as well.

I'm convinced that the Chiari is what causes the NMH. I've heard from others on

this list that there are doctors that feel this is the case and are doing

studies to link ACM and NMH scientifically. Hope this is some help.

on 03/01/2001 01:42 PM

To: chiari

cc:

Subject: question

hello i hope all are having a good day i have a coulpe of

questions ..im sorry if they seem dumn. but im courious as to what

they are .so here goes. " AQUIRED " IM NOT QUITE SURE ON THE MEANING

OF THAT ONE. DOES IT MeaN FROM AN INJURY OR WHAT?and what is a table

test???thanks tracy

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[Guest guest]

Hi Larry. Thank you for yur reply. I also have alot of sinus problems. It

seems like the tightness comes on with my sinuses. The burning comes on any

time. Most of the time I have burning in my shoulders and neck. Some times

even in my lower back. I am on a cleaning crew in a factory and I do alot of

physical work. Sometimes I wander if the work I do can aggrivate chiari.

Thanks again. Have a good evening.

Re: question

In a message dated 3/21/01 8:02:10 PM Eastern Standard Time,

LAGDMG@... writes:

Hi everyone. I have a question again. Does anyone get burning in the back

of neck, top of back, and in their ears? I do alot.

Yes, , my pain is continuous - back of the top of the head, all the way

to my neck, in the ears. I also have a lot of throat pain from constant

postnasal drip, which also causes my lymph nodes to always be swollen.

The burning in my ears just started this week. But I have had the burning in

my

back and neck for quite a while. Sometimes I get so depressed because I

just want the symptoms to go away and I know they wont.

God help us all, yes. Many doctors think that we are depressed and that is

why we feel so miserable. It is really the opposite - we feel so miserable,

which causes immense frustration and anxiety. Monetary pressures because we

can't work, conflicts because we are irritable, people who think we're nuts

or hypochondriacs. It is quite a burden to bear.

My best advice is that the Lord's shoulders are strong enough to hold your

burdens. Pray and have others pray for you. Pray for His healing touch and

that He grants wisdom to your doctors and that he leads you to the right

ones. This experience can make you feel like Job. Though others may have

more severe medical crises, this condition is enough to bring one to their

emotional knees and physical ones from exhaustion!

Thanks everyone.

Have a nice day and may God smile upon you and grant you his healing touch,

Larry C.

dx in November 1999 with fibromyalgia, chronic fatigue syndrome and occipital

neuralgia (headaches at the base of the neck), though I have been suffering

for 15-20 years. Eagerly seeking for 18 months a doctor to order an MRI so

that I can be evaluated for possible Chiari.

[Guest guest]

When you feel ready or when the Doctor gives you the ok. I had to wait 2

weeks.

Hugs~

Donna Lay

[Guest guest]

I have Fibro and not rls and have the numb, tingling in the right side of my

face. It comes and goes as it pleases. Everyone is different as to where

this might happen and how many places on their body it happens to. However,

I don't know anything about rls.

I hope this helps,

Jane

*******************************************************************

I have tingling feeling in my face, arms, hands, legs, feet all over.

Is this from fibro or rls?

[Guest guest]

My mom had it on her face & she was told she had a stroke..

she does not have fibro.. I'd get that checked out..

--- Mike & Jane Gagner wrote:

> I have Fibro and not rls and have the numb, tingling in

> the right side of my

> face. It comes and goes as it pleases. Everyone is

> different as to where

> this might happen and how many places on their body it

> happens to. However,

> I don't know anything about rls.

>

> I hope this helps,

>

> Jane

>

>

>

>

*******************************************************************

>

>

>

> I have tingling feeling in my face, arms, hands, legs,

> feet all over.

> Is this from fibro or rls?

>

>

>

>

[Guest guest]

I have few questions back in middle of July I had hammertoe surgery done on my

left foot I had four toes bent and for six weeks I had wear pins on my end of my

toes very painful.

I've seen two doctors and now got nerve pain on little toe one by it, burning

tingling feeling nothing really helps. Hurts keep sock on foot worse keep shoe

on it or do lot walking. My doctor put me on two nerve medicine one for

gasmapton and other nerve pill, so frustrated I also got tremors in both hands.

I wonder if I should file suit on the doctor on it? One did surgery. If anyone

been through this issue?

sue c