Re: n/Brain Problem/?epilepsy

[Guest guest]

Hi n:

I just can't figure out how we can all be so sick with so many weird

cognitive symptoms and have everything be normal on tests. I see a

neurologist for migraines but I doubt that he would be open to checking

me out. :-(

~Teena

On Tue, 18 Apr 2006 17:35:03 +0000 " n Tait " <mariontait@...>

writes:

> Hi

>

> Yes, I am more or less sure I have been checked for epilesy when I

> was at

> the national ME hospital but as usual all tests normal, it sure does

> not

> feel normal

>

> n

>

>

> >From: rudedog89@...

> >Reply-

> >

> >Subject: Brain Problem/?epilepsy

> >Date: Tue, 18 Apr 2006 11:15:35 -0500

> >

> >Hi:

> >

> >I have read with interest the comments under this thread because I

> have

> >experienced many of the same things - only I wasn't able to put a

> label

> >on some of them ie " empty eyes feeling " and thought it was just

> " me " !!

> >Also, I feel that a lot of my emotions/perceptions are blunted and

> have

> >just attributed it to depression. I have a lot of cognitive stuff

> >happening that comes and goes. Sometimes it is hard to find words

> to form

> >sentences or either I just feel too confused to try to put my

> thoughts

> >into words. I have actually had gibberish come out of my mouth. I

> have

> >wondered if there might be some sort of seizure activity happening

> in the

> >brain but have never been checked. To me some of this stuff is

> sounding

> >suspiciously like some of the symptoms of temporal lobe epilepsy.

> Anybody

> >in the group had an EMG to check for seizure activity? Just my

> >thoughts....

> >

> >Best Regards,

> >

> >Teena

>

>

>

>

> This list is intended for patients to share personal experiences

> with each other, not to give medical advice. If you are interested

> in any treatment discussed here, please consult your doctor.

>

[Guest guest]

Teena and all

What I did last summer to get a better handle on my significant

cognitive/brain issues is to have my brain mapped at _www.pathmed.com_

(http://www.pathmed.com)

These EEG-type tests along with a good neuropsych gave me a better handle on

the state of my brain and how to better serve it.

See Braverman's books, especially The Edge Effect and Healing Nutrients

Within.

mjh

From: " rudedog89@... " rudedog89@...

Date: Thu Apr 20, 2006 0:10pm(PDT)

Subject: Re: n/Brain Problem/?epilepsy

Hi n:

I just can't figure out how we can all be so sick with so many weird

cognitive symptoms and have everything be normal on tests. I see a

neurologist for migraines but I doubt that he would be open to checking

me out. :-(

~Teena

mjh

" The Basil Book "

http://foxhillfarm.us/FireBasil/

[Guest guest]

Teena,

There are tests and there are tests. I've just followed part of the brain

thread, but relate to most of it.

We usually don't get the tests that will show our malfunctions. SPECT or PET

scans, Queeg? for instance.

Long ago I had an eeg that was " mildly abnormal " . I've had 2 Sets of

Neuropsychological testing. They distinguish betwen psychological and organic

problems. Mine both showed evidence of Right Hempishere impairment, and

specified cognitive, executive, and other dysfunction, that the Neuro said

matched perfectly what I was reporting in daily difficulties.

I have high titres to the Ciguatera toxin.

I've now had an MRS brain scan which measures brain metabolites. It showed

spikes of lactate in 5 or 6 of 36 grids. They were near specific sites of

functioning that relate to symptoms I have. ---

I remember some research years ago that reported the word-finding

problem...there is a specific name for that...Also I recall somewhere that

described that a 10 second distraction would make the CFIDS person lose their

place in thought or sentence.

In research studies there has been found low blood flow to brain, and shrinking

of grey matter, in addition to blood work showing infections that are known to

hit the brain.

We fail the Romberg test, which indicates brain impairment.

We have over active immune system that can make Cytokines at a toxic level ,

affecting the brain. Those of us tested, mostly show a potent Neurotoxin, very

close to Ciguatera poison.

The CAA put out an issue over 10 years ago that showed the different aspects of

memory. Different ways it can be malfunctioning, and which parts can be healed.

Our testing is all hit or miss. If they ever took our entire ME/CFS population

and ran all tests available, based on our symptoms...they would definitely find

significant abnormalities.

Added to that, is the fluctuation over time of the way things might show in

tests, and that there is not the technology to show other things.

After years and years with no evidence, now I have some, just a bit...but it's

basicly meaningless to anyone else family,friends or doctors.

ANd only a small bit helpful for me, for coping skills, or reality check.

Now, some of us have damage from medications we've taken, for lack of any other

treatment.

If our epidemic had been properly investigated, researched and treated, we would

have had tests, treatment and rehabilitation for healing and coping daily for

knowledge and better quality of Life. Plus education for family friend and

physicians to support and contribute to that healing and quality.

This is what fuels advocates/activists...to work toward proper recognition,

naming, research and treatment, including for others in our lives who are

impacted.

Katrina

In , rudedog89@... wrote:

>

> Hi n:

>

> I just can't figure out how we can all be so sick with so many weird

> cognitive symptoms and have everything be normal on tests. I see a

> neurologist for migraines but I doubt that he would be open to checking

> me out. :-(

>

> ~Teena

>

> On Tue, 18 Apr 2006 17:35:03 +0000 " n Tait " <mariontait@...>

> writes:

> > Hi

> >

> > Yes, I am more or less sure I have been checked for epilesy when I

> > was at

> > the national ME hospital but as usual all tests normal, it sure does

> > not

> > feel normal

> >

> > n

> >

> >

> > >From: rudedog89@...

> > >Reply-

> > >

> > >Subject: Brain Problem/?epilepsy

> > >Date: Tue, 18 Apr 2006 11:15:35 -0500

> > >

> > >Hi:

> > >

> > >I have read with interest the comments under this thread because I

> > have

> > >experienced many of the same things - only I wasn't able to put a

> > label

> > >on some of them ie " empty eyes feeling " and thought it was just

> > " me " !!

> > >Also, I feel that a lot of my emotions/perceptions are blunted and

> > have

> > >just attributed it to depression. I have a lot of cognitive stuff

> > >happening that comes and goes. Sometimes it is hard to find words

> > to form

> > >sentences or either I just feel too confused to try to put my

> > thoughts

> > >into words. I have actually had gibberish come out of my mouth. I

> > have

> > >wondered if there might be some sort of seizure activity happening

> > in the

> > >brain but have never been checked. To me some of this stuff is

> > sounding

> > >suspiciously like some of the symptoms of temporal lobe epilepsy.

> > Anybody

> > >in the group had an EMG to check for seizure activity? Just my

> > >thoughts....

> > >

> > >Best Regards,

> > >

> > >Teena

> >

> >

> >

> >

> > This list is intended for patients to share personal experiences

> > with each other, not to give medical advice. If you are interested

> > in any treatment discussed here, please consult your doctor.

> >

[Guest guest]

I had all kinds of abnormal tests. They just need to know what to test for.

They said my MRI was normal but the expert said it had spots all over it. I had

a SPECT which was abnormal, and qEEG that was abnormal, and a neuropsych which

was abnormal. I had a lot of other abnromal tests but these were the cognitive

ones. You are right, a neuroligist that didn't understand CFS probably wouldn't

do any of these. But one that understood CFS probably would.

Doris

----- Original Message -----

I just can't figure out how we can all be so sick with so many weird

cognitive symptoms and have everything be normal on tests. I see a

neurologist for migraines but I doubt that he would be open to checking

me out. :-(

~Teena