Question

[Guest guest]

>very loud hiccups,

that is so strange, maggie my (borderline) daughter has those loud and has

the hiccups too, alot more lately, she has gone through her fatigued stage

agin this week, I am getting the cine mri done on her soon, and see from

there,

PamH

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[Guest guest]

dawn

you wrote " Would those of you with children of ACM, in the age range of say 10

to 15

please tell me what there first most obvious signs were that were, A-

typical :

gee dawn , i think most of us remember these years pretty well too ......why

limmit your question to those who have kids with acm ?

i know in elem . school , i already had legs that wore out way before others

, was getting intensive long term eye therapy thorugh kaiser hosptial ( debth

perception stuff mostly i think ) , asthma since day of birth . is that the

sort of stuff you want ? i think each of us is going to show different

symptoms , depending on just whats involved . my 2 cents :-) sarah in paradise

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[Guest guest]

Dawn,

My daughter, Alyssa 12, was diagnosed in Nov 98. The convincing symptom was

her Chiari headaches. She was a cheerleader in 97/98 and doing gymnastics,

also. Her headaches were occurring daily during that time.

Since finding this list, I have said to myself many times...I wish I'd have

know that before!

At the age of 7 she was having " anxiety attacks " where she couldn't breathe.

(these really were breathing problems from her Chiari).

She also has nystagmus, very loud hiccups, no gag reflex, choking problems,

among others.

My best advice...stop wondering and get an MRI done.

Hope this helps,

Beth Bucholz

Bakersfield, CA (yes, the 6 inches of snow has almost melted)

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[Guest guest]

At 10:41 PM 1/26/99 EST, you wrote:

>Would those of you with children of ACM, in the age range of say 10 to 15

>please tell me what there first most obvious signs were that were, A-

>typical(if there is such a thing) of ACM that symptoms list

I have 3 kids...but after I was diagnosed and had my first neurosurgery I

knew exactly which kid needed the MRI. MY son Oliver had always had

*weird* headaches...like mine. We always joked that we were so much alike

becasue we had clumsy balance and these headaches. Also our necks were not

as flexible as the average person. We used to joke about that too...we

always said he inherited his moms weird headaches and neck. I had to fight

5 doctors who insisted I was crazy, that these things did not occur like

that in familys. I waited 11 months on the list for an MRI and finally said

screw it and spent the money and took him to Buffalo and got one. There I

had to argue with the guy who told me Chiari was an incidental finding, one

they often do not even report because it causes no problem. I almost hit

him. I grabbed the films and the report stated that he had a 6mm herniation

but that they were uncertain as to whetehr this was chiari or not. Of

course I have since become much more knoeledgable and experienced and can

see the other signs in the MRI as well. His CM is not nearly as severe as

mine, but he has a shortened occiput, and at the age he had his MRI done

the average measurement for the cerebellar tonsil is 4mm ABOVE the level of

the foramen magnum (this was back when we thought size really mattered...we

now know it does not) and his was 6mm below.

I never considered scanning my other two kids...but I knew from day 1 that

my oldest son was dealing with the same thing.

SO a combination of symptoms (headaches made worse by cough or sneeze or

bending over) dizziness or fading out when they get up too fast from

sitting, and your own gut feeling. I knew by the look on my sons face when

he jumped up from the couch...that spaced where am I stop my head from

pounding look...that I recognised so well.

Hope this helps...

Darlene

" A man is what he thinks about all day long. "

World ACM Association...

http://www.pressenter.com/~wacma/

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[Guest guest]

>At 10:41 PM 1/26/99 EST, you wrote:

>>Would those of you with children of ACM, in the age range of say 10 to 15

>>please tell me what there first most obvious signs were that were, A-

>>typical(if there is such a thing) of ACM that symptoms list

Hi Dawn,

I do not have a child, but I remember being a child with Chiari symptoms,

but no diagnosis. Here is what I had:

- headaches, frequent - they were not usually too bad, although on

occasion they made me sick... they are not/were not " typical " Chiari headaches,

though, in that they were/are usually all over my head, or even in the front

of my head. I was taken to a doctor when I was about 11 or 12, because I'd

been having them a lot. He told me I looked tired, x-rayed my head,

and said it was probably a sinus condition.

-joint pains - during my early and mid teen years, I experienced a LOT

of trouble with joint pains, to the point where I was tested for arthritis

and given a preliminary test for lupus. The tests kept coming up

negative, and they never did figure out the answer.

-muscle pains - I had quite frequent terrible leg pains throughout my

childhood, and sometimes arm pains. They seemed to abate gradually

throughout the years, although occasionally I still get the leg pains.

Never had a why or wherefore about these.

My mom and I would always joke that I had some weird condition

that nobody knew about and would not be diagnosed until it was too

late to do anything. (I had a morbid sense of humor, even as a kid!)

The probable cause for some or all of these was Chiari, though, and,

luckily, I was diagnosed while my symptoms were not bad... they're

still not too bad. I have not had surgery yet, but will if my symptoms

continue to progress to a point where I am uncomfortable all the time.

Hope this helps,

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[Guest guest]

When i went to my nsg last week we poured over my mri's for two hours. ended

up wtih chiari 1 and a demylinated lesion at T11. He said he hoped the lesion

was not ms, when i asked what else it could be, he got really quiet and then

said that he thinks that i am just someone that has the luck to have been born

with chiari 1, and am now developing something new......ms.

We talked about surgery and i was extremely pleased with all of his answers

and his honesty about how they just don't know everything yet. He said that

he did 6 surgeries on patients with just chiari recently (he has others with

sm, and some with second decompressions too, but we stuck with the ones that

have similar cases). out of the six, four had symptoms all their lives that

have gotten progressively worse. TWo had symptoms come on after some kind of

accident or fall. the four that had the chiari symptoms for a long time, are

doing quite well. the other two he said aren't, and he feels that he may have

done unecessary surgery on them. said that maybe when they present like that

......that there is something else going on that the nsg's dont know about yet.

Anyway he thought that i was a good candidate for decompression and we talked

about all the aspects of surgery, grafts, pain meds, aftercare (he does his

own cause he says he wants to know who was truely helped and who wasn't). He

told me of a physician that he operated on who he just *knew* he could help.

and said he didn't get any better. so he is just not willing to make any

promises. and that goes right along with what i already knew. i was just

glad to hear him be so honest and well informed about it all.

He told me the reason he does a smaller decompression than Dr. Milhorat, and

others who are doing larger decompressions, partly is to keep intact the

muscles that attach to the back of the skull. he parts them when operating

and puts them back in place when finished. cutting as very little as

possible.

I asked him about chiropractic adjustments. He said that he knows that some

get relief from this. He said his thinking is that they are able to relax the

muscles in that area and thus take pressure off of nerves and etc. (although

he said this is his own thinking...he is not sure exactly what is happening in

chiro care, just hypothisizing using his own judgement) Said he doesn't see

how it could FIX chiari, cause he can't see that they could adjust as to move

the tonsils or cerebellum to make more room, as there just isn't any room

there for them to move to; but if regular adjustments keeps the pressure off

and the patient in less pain, he would not be one to say no to it. BUT, and i

found this very very interesting and honerable. He said he realizes that

there is the chance for injury when seeing a chiro, but that he feels it is

much smaller than the odds of an nsg causing damage (of course unknowingly)

because the nsg is going into the brain and of course it is much more

invasive; and again, they just don't know everything yet. I thought it was a

very honest and respectable answer. then he did go over the things that

*could* happen with adjustments. he did think the idea of getting a chiro who

is currently working on several chiari patients and having success, to consult

with the chiro that one picks to do thier adjustments was an extremely good

idea.

So, i pretty much left there with the idea that if/when i decide i want

surgery to call him and he would do it for me. He also recommended that i

watch the patients that i know are his online, and see how they do. His name

is Dr. , and he works out of Dartmouth/Hitchcock in Lebannon. I know

a few people have talked to me about him and have been very happy with him. I

believe Marc has just had a second surgery with him, and someone else also.

the question that i had was this. He identified that i have two spinal fluid

cysts at the veryend of the tailbone. He said that it is not too uncommon and

is usually symptomless. We looked over the mri's an saw that there is no

tethered cord in the area. Does anyone else have these cysts, and did they

cause issues with you? did anyone have them removed? if so why? I would like

to know anything that anyone knows about these kind of cysts.

Besides my physical limitations, which are great in themselves. Myworst

symptoms now are pain and pressure in myhead and neck. such that it feels

like my ears and eyes are being pushed out. they always hurt. i also get

hypersensitive skin on my face and scalp; which he was concerned about. add

to this the depressed respiratory system when i overdo it, moderate swallowing

issues, and voice shakiness. and you have quite a picture of brain stem and

cerebellum issues.

I have said before that my quality of life was such that i could live with

this. but that was before i started getting these headaches and pressure. My

gp, has added three percocets a day to my drug regimin. which already

includes, six ultram a day, three klonopin, 100mg zoloft, 45mg. ritalin,

flexeril at bedtime, and senecot for my bowel program. I also self cath

intermitantly.

Dr. said he feels that my upper body symptoms may be alleviated with

the surgery, but that the foot drop, bladder and bowel disfunction are from

the T11 lesion and would not improve.

I would appreciate any comments about this physician, and/or any of the topics

discussed above.

Thanks bunches,

Terri in NH

ACM1 and MS *P.S. my son who has the mild autism and became schizophrenic

last year is responding beautifully to the new antipsychotic meds and i am

seeing my michael again for the first time in about 10 months. i feel like

jumping for joy in his case!!! what a wonderful miracle for him!

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[Guest guest]

I'm not. I'm type II, glucophage and glucotrol.

in Cincinnati

[Guest guest]

:

Having an HbA1c of 4.0 is very good. I went to a group at Kaiser and

they explained that if you have an HbA1c of over 8 for a period of five

years or longer you start to have complications of diabetes. HbA1c,

however, is a measure of " average " blood sugar levels over a 12 to 16

week period of time, the time it takes for your body to completely

replace the red blood cells in your blood. If you have readings of 260

two hours after a meal, you probably do have diabetes. At least, the

ADA says that you do. The object of blood sugar control should be to

try to even out the highs and lows as much as possible. Even though you

had two low fat muffins, there were still sugar and carbohydrates in

them and you may not be able to properly control the blood sugar level

following eating carbos. My Diabetes Educator told me to always eat

some kind of protein with a high carbohydrate food. So, I have a piece

of fat free cheese with breakfast of cereal, milk and fruit. The

protein causes the body to absorb the sugars more slowly so the peak in

the blood sugar level will be lower over a longer period of time. Also,

the caffeine in coffee will raise blood sugar levels. The only way to

find out how foods are processed in your body it to continue testing

after eating different foods.

I have difficulty accepting that I am a diabetic too. My HbA1c was 9 in

march and my blood sugar level was 248 after a 14 hour fast. Since then

I have been on a strict diet and my HbA1c is now down to 5.3 and my

blood sugar levels are in the range of 81 mg/dl over the last 14 days.

I check my blood sugar level before breakfast and two hours after

starting dinner every day. I also found that if I go for a short walk an

hour after dinner my blood sugar levels get lower much faster. I

usually walk for 20 minutes. By the way, I have lost 45 pounds since

the first of January and never felt better than I do now.

Good luck and don't hesitate to write more to the group. There are lots

of caring, and informed people out here.

It there is anything I can do to help, write me.

Erwin

[Guest guest]

, you are lucky to have such a low HBA1c. The ADA sets the criteria that

anyone having a

reading of over 200 at anytime is diabetic.

I think about half a muffin would be a full load for me. It is the starch that

turns into sugar

through digestion. Sam

[Guest guest]

- Getting used to the idea that you are a diabetic is all part of the

process. You certainly need to see a doctor to get a professional opinion but

I can tell you that I am definately a diabetic - diagnosed about 11 months

now and my HbA1c last time was 3.8. And yes if I ate two blueberry muffins my

BS would be that high - the low fat part doesn't matter when it comes to

Blood Sugars in fact, fat helps regulate the absorption of sugar in the

system which is why non-fat milk shoots my BS higher than 2%. I eat higher

protein - lower carb and that keeps my BS in a " normal " range. Of course when

we are trying to lose weight the fats have to be watched. Please feel free to

ask questions - no one is going to kick you off the list for that. Rebekah

[Guest guest]

Another thing to remember when looking at LOW FAT items is they are usualy

much higher in sugar . When you add that to the carbs from the other

ingredients, i'm sure your bgs will go up. I just stay away from that kind

of eating and tru tp eat a balanced diet and watch the carb's. Remember

each of us react differently to food so it is important to find out what food

you can eat without driving up your bg's. Regards

[Guest guest]

Thanks, Erwin! Been wanting to eat cereal, banana and milk without sugar

going so high. Thanks for suggesting the cheese.....will sure try it in

the morning.

Love this list! Everyone is so helpful. Thanks, guys!!

At 01:36 PM 9/19/99 +0000, you wrote:

>

>

>:

>Having an HbA1c of 4.0 is very good. I went to a group at Kaiser and

>they explained that if you have an HbA1c of over 8 for a period of five

>years or longer you start to have complications of diabetes. HbA1c,

>however, is a measure of " average " blood sugar levels over a 12 to 16

>week period of time, the time it takes for your body to completely

>replace the red blood cells in your blood. If you have readings of 260

>two hours after a meal, you probably do have diabetes. At least, the

>ADA says that you do. The object of blood sugar control should be to

>try to even out the highs and lows as much as possible. Even though you

>had two low fat muffins, there were still sugar and carbohydrates in

>them and you may not be able to properly control the blood sugar level

>following eating carbos. My Diabetes Educator told me to always eat

>some kind of protein with a high carbohydrate food. So, I have a piece

>of fat free cheese with breakfast of cereal, milk and fruit. The

>protein causes the body to absorb the sugars more slowly so the peak in

>the blood sugar level will be lower over a longer period of time. Also,

>the caffeine in coffee will raise blood sugar levels. The only way to

>find out how foods are processed in your body it to continue testing

>after eating different foods.

>I have difficulty accepting that I am a diabetic too. My HbA1c was 9 in

>march and my blood sugar level was 248 after a 14 hour fast. Since then

>I have been on a strict diet and my HbA1c is now down to 5.3 and my

>blood sugar levels are in the range of 81 mg/dl over the last 14 days.

>I check my blood sugar level before breakfast and two hours after

>starting dinner every day. I also found that if I go for a short walk an

>hour after dinner my blood sugar levels get lower much faster. I

>usually walk for 20 minutes. By the way, I have lost 45 pounds since

>the first of January and never felt better than I do now.

>Good luck and don't hesitate to write more to the group. There are lots

>of caring, and informed people out here.

>It there is anything I can do to help, write me.

> Erwin

>

>

>>

[Guest guest]

At 01:44 PM 9/19/99 -0400, Duff you wrote:

>after i had eatten -- am i diabetic with my H1C being normal? Is

>everyone's bs 260 after they have eatten? i had two low fat blueberry

,

Your Blood Glucose always high after you ate, so correct measure is two

hours after meal.

[Guest guest]

Mr. G.G.????

fp

Question

>

>

> Who is Mr. G. G.?

>

> Kossart

>

>

>

> Peru, IL USA

> NMRA, LDSIG, OPSIG, BRHS, TP & W-HS

> LaSalle & Bureau County Model R.R. Club

> Chicago, Burlington & Quincy Model RR,

> Illinwek River Branch (H.O.-1969)

> " Serving Agriculture & Industry In The Illiniwek River Valley "

>

> --------------------------------------------------------------

>

>

[Guest guest]

Hello all,

My name is Crissy and I am a newbie to this field.....I just completed my call

taking training and am now starting the law dispatch. I work for San Joaquin

County SO (Northern CA just south of Sacramento) where we dispatch fire and law.

Here is my question....I have been studying all the commands and codes and they

are in my mind fine while studying....but while in the training room (typing the

radio traffic and siteing the deputies out on calls....the commands seem to

escape my mind)....I also can feel my stomach roll at the thought of " messing

up " while on the radio and causing some harm.

Besides just bucking up and doing it....is there any other suggestions for

getting past this?

I have spoken with my TO and am told that I am doing fine and in many aspects

light years ahead of where I should be......but that still doesnt change the

stomach butterflies.....

I love what I am doing and just dont want to cause any deputy harm due to a

brain freeze or butterflies in the stomach....

thanks in advance for any suggestions...

Crissy

(taking a deep breath and going back to studying)

---------------------------------

[Guest guest]

Does anyone know if tighten or narrowing of the airways also belongs to pf/ipf or is this a new condition that I must add to my list. ipf 7/05

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