Re: Cardio Visit

[Guest guest]

Oh Cassy. I'm glad you got the walker but I'm sorry about the rest of the news. How are you feeling about all of this? What is Ischemic testing? love youSharon This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Cardio Visit

I seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye.

hugz,cassy

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[Guest guest]

I'm still praying for you sis.

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Cassy,

I am so sorry that you are worse. My heart goes out to you. You remain in my prayers.

Hugs

nne

I seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye.hugz,cassy

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My eye doctor shook his head in February - one eye was 4 + and the other was 5 - or the other way around. He said how can you see? I just shrugged - I'm brain dead - how do I know?

Cardio Visit

I seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye.hugz,cassy

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((((Cassy))))

I wish I was there to give you a real hug, a nice long bear hug!!!! This is scary news, but don't jump to any conclusions until you know for sure.

My Dad has Parkinsons and he shakes so I'm confused as to the part about you being rigid and your symptoms being like Parkinsons. Maybe once they know what you are up against they will know better how to treat it.

Have you ever done any physical therapy at any time during all of this? That may help you as well. As for the walker with a seat, I'm glad that it came to you so quickly, but sure wish you didn't need it.

Praying for you and always here for you.

Love ya

Peggy>> I seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye.> hugz,cassy>

[Guest guest]

I found a link for you to see: http://www.muscular-dystrophy.org/information_resources/factsheets/medical_conditions_factsheets/mcardles.htmlRemember when the docs were thinking something about Muscular Dystrophy? Now this link is on an MD website. Did you know there was a connection of some sort? I'm going to go ahead and copy and past the info here for you. Tell me if you think this fits you. I'm glad you have your mom! Miracles DO happen! I'm praying for you every day, Cassie.loveSharonWhat is McArdle’s disease?

McArdle’s disease is a metabolic muscle disorder first described in

1951 by Dr McArdle. The disorder is also called Glycogen Storage

Disease Type V (GSD V). People born with McArdle’s disease are unable

to produce an enzyme called muscle phosphorylase. This enzyme is

important in producing the fuel source required by the skeletal muscles

for exercise.

To Top

What are the symptoms?

People with McArdle’s disease develop severe muscle pain and fatigue in

the first few minutes of exercise. If exercise is continued despite the

pain, a severe muscle spasm or contracture will develop. This results

in muscle damage leading to myoglobinuria, a dark discolouration of the

urine. Many

people with the condition remember painful symptoms from early

childhood but the disorder is rarely diagnosed before adulthood. Some

people notice a worsening of their symptoms in middle-age and this may

be accompanied by some muscle wasting, especially over the shoulders

and back. Most people live normal lives and learn to improve their

exercise tolerance using a “second wind”.

To Top

What is a second wind?

There are two types of exercise: aerobic exercise includes walking,

gentle swimming, jogging and cycling. Anaerobic exercise is more

intense or sustained exercise and includes running, walking uphill and

carrying loads. The first few minutes of any exercise are usually

anaerobic. Normally,

during anaerobic exercise, muscle phosphorylase converts glycogen

(stored starch) to glucose (sugar). The glucose enters a metabolic

pathway known as the glycolytic pathway, which ultimately produces ATP

(energy). During aerobic exercise, the main energy source comes from

free fatty acids carried in the blood stream. These fatty acids enter a

different metabolic pathway, called oxidative phosphorylation, which

takes place in the mitochondria (these are the power houses of the

cell) the end result is the production of ATP. A second wind is

like a key opening the door, enabling exercise without pain for people

with McArdle’s disease. After a few minutes of exercise when pain

occurs, if the individual rests for a moment or two, exercise can be

continued without severe pain. The second wind probably results from a

switch in metabolic pathway from the glycolytic pathway to oxidative

phosphorylation.

To Top

Which muscles are affected?

Any skeletal muscle is affected. Usually walking brings on symptoms in

the legs and carrying heavy shopping affects the arms. Sawing, digging

or squatting may affect the back muscles and some people develop pain

eating chewy foods.

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How is McArdle’s disease diagnosed?

A blood test will usually reveal a raised muscle enzyme known as

creatine kinase (CK). Sometimes a forearm lactate test is performed,

although this is not essential. The diagnosis is confirmed by a muscle

biopsy, which shows an excess of glycogen and absence of the muscle

enzyme phosphorylase. In up to 85% of patients from Northern Europe, an

abnormality in the gene encoding for muscle phosphorylase, called R50X

(previously known as R49X), can be detected on a DNA test (blood test).

In practice such testing is rarely helpful and not always available and

is not essential to make the diagnosis.

To Top

Is there any treatment?

The ability to develop a second wind is greatly increased by keeping

physically fit. Taking regular gentle aerobic exercise, such as walking

is important. At the start of exercise, when pain occurs, slow right

down or stop until the pain has subsided, then try again. Sustained or

severe exercise, such as weight lifting, or sprinting, must be avoided

because of the high risk of muscle damage. Continuing to exercise in

the presence of severe pain will also result in muscle damage and

myoglobinuria, which will in turn increase the risk of acute renal

failure. Many

different diets and supplements have been tested in McArdle’s disease

such as high protein diet, vitamin B6 and creatine supplements, as yet

there is insufficient evidence to suggest that any of these benefit

people with McArdle’s disease. There is some evidence to suggest that a

sugary drink prior to planned exercise might help. This however, needs

to be balanced against excessive weight gain, which should be avoided

at all cost. Carrying increased weight will lower your body’s aerobic

threshold and make exercise more difficult. Keeping aerobically fit is

the best way to condition McArdle’s muscles to improve performance and

improve quality of life.

To Top

What happens if myoglobinuria occurs?

Most people with McArdle’s disease will develop myoglobinuria at some

time in their lives. Myoglobinuria is a dark discolouration of the

urine from a red- brown colour (mild) to a brown-black colour (severe).

This is a warning sign for acute renal failure, which can occur if

severe muscle damage has occurred. If this happens the kidneys stop

producing urine because the draining tubules become blocked with the

products of muscle breakdown. If

the episode of pain and contracture was not too severe myoglobinuria

will be transient and lighter in colour. After more severe episodes the

muscles may be swollen and tender and there may be flu like symptoms.

Minor symptoms are managed by increasing fluid intake to maintain a

good urine output. More severe episodes will require an admission to

hospital for intravenous fluids and if kidney failure occurs, a period

of dialysis may be required. Kidney failure is almost always

reversible, but expert treatment is required immediately to prevent

complications during the acute stage. It is, therefore, very important

to seek medical help early should any of these symptoms occur.

To Top

Are there any other precautions?

There is a reported risk of acute muscle damage, with certain general

anaesthetics (usually muscle relaxants and inhaled anaesthetics),

although in practice problems appear to be very rare. The anaesthetist

should be made aware of the diagnosis of McArdle’s disease, and may

choose to avoid certain anaesthetic agents. Tourniquets should not be

used during operative procedures in patients with McArdle’s disease.Affected

women do not seem to be disadvantaged by pregnancy or childbirth. A

natural childbirth is a realistic possibility for women with McArdle’s

disease.

To Top

Will I become disabled?

McArdle’s disease does not affect life expectancy. Some people do

notice a slow deterioration in their symptoms over many years but by

far the majority of people remain independent and able to walk.

To Top

Can it be passed on to my children?

The condition is caused by a recessive gene. This means that one

abnormal copy of the gene is passed from each parent to the affected

child, who in turn will have inherited two abnormal copies of the gene.

The risk for both carrier parents to have an affected child is 1:4 for

each pregnancy.People

who have McArdle’s disease do not usually pass the condition onto their

own children because one normal copy of the gene will have been

provided by their partner. However, all of their children will be

carriers. Generally speaking carriers do not have symptoms. This email is a natural hand made product. The slight variations in spelling and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. Re: Re: Cardio Visit

Hi Sharon.Thanks!I am ok.I dont know what is going on but I choose to

be mostly in denial.lol.My mom reminded me that miracles happen everyday

And to keep my faith and fight. And some how it will be ok.I luv my

mom!The definiton says that Ischemic testing is used in evaluation of pts

w/suspected McArdle disease and the levels lok for mitochhondrial

myopathy.I cant even keep up!Lol.Like a glucogen storage disease.This is

way over my head.lol.hugz

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Ohhh you can't just have any run of the mill muscle disease, it has to be "rare". You have to stand out in a crowd, huh? lol

{{{{{{{{Cassy}}}}}}}}

Love,

Challis

Cardio Visit

I seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye.hugz,cassy

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[Guest guest]

I bet he's there buying her cake!

Challis

Cardio Visit

I seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye.hugz,cassy

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

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I wish! Lol. I will be lucky if he remembers me! Lol.lol.

Re: Cardio Visit

I bet he's there buying her cake!

Challis

Cardio Visit

I seen the cardio.He ordered me a walker with a seat and I got it

already!He said I am worse,and my muscles dont stop contracting and im

very rigid.He said alot of my symps are like parkinsons.I am having

Ischemic testing next wk and soon muscle biopsy,he thinks it may be a

rare muscle disease.He needs to speak with the neuro,hes in India so he

will email him and when hes back in jan I will see him.My eye has a

blind spot and I guess I didnt realize since I compensate with my other

eye.

hugz,cassy

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try

it now.

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know-it-all with Yahoo! Mobile. Try it now.

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Yup.Wont be back till jan.Ugh!lol.Im sorry your goin threw it too

Kate. And extra sorry about your insurance.Im so grateful mine was

covered. It has a seat and brakes.It is a 109$ walker.The cardio called

in the script when I was there,that night Apria healthcare called me

and said it was ready and they would deliver it the next day.And they

did.The other piece of junk 1 I have I had to wait 2 wks. For it to be

approved.The girls would never forget you. Nobody could forget you

Kate. You are a treasure. Im happy you are back.

hugz

cassy

Re: Cardio Visit

Not only that, Challis, but besides being rare (and

special)

our amazing Cassy's neuro is in INDIA right

now!lol!

Now how 'pecial is that?

I am sorry though, Cas, I wish you didn't have to go

through

all this! I just got a script for a walker also. Just came

back

from the hospital supply/pharmacy in town; they of

course

don't accept my insurance. One of the ones I'd

like--with

a seat, hand brakes and wheels of course, is about

$125

Walking has become painful, difficult and very tiring for

me--

I imagine if I feel this way, you must feel doubly as awful

walking,

Cassy. My heart hurts for you. Parkinson's does seem like it

could

be a possibility> ? even at your young age? it can strike

while you

are so young? Know you are in my heart, prayers, and that I

love

you. Please hug the girls from me, Cassy. Remind them of

who

I am--wink.

love, Kate

Cardio

Visit

I seen the cardio.He ordered me a walker with a seat and I got it

already!He said I am worse,and my muscles dont stop contracting and

im very

rigid.He said alot of my symps are like parkinsons.I am having

Ischemic

testing next wk and soon muscle biopsy,he thinks it may be a rare

muscle

disease.He needs to speak with the neuro,hes in India so he will

email him

and when hes back in jan I will see him.My eye has a blind spot and

I guess

I didnt realize since I compensate with my other eye.

hugz,cassy

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it now.

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LoL! Ya. Whats with me getting all this rare crap?lol. I hear rare and

I cringe.lol.

Re: Cardio Visit

Ohhh you can't just have any run of the mill muscle disease, it has to

be " rare " . You have to stand out in a crowd, huh? lol

{{{{{{{{Cassy}}}}}}}}

Love,

Challis

Cardio Visit

I seen the cardio.He ordered me a walker with a seat and I got it

already!He said I am worse,and my muscles dont stop contracting and im

very rigid.He said alot of my symps are like parkinsons.I am having

Ischemic testing next wk and soon muscle biopsy,he thinks it may be a

rare muscle disease.He needs to speak with the neuro,hes in India so he

will email him and when hes back in jan I will see him.My eye has a

blind spot and I guess I didnt realize since I compensate with my other

eye.

hugz,cassy

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Who could forget you? ;o)

Challis

Cardio VisitI seen the cardio.He ordered me a walker with a seat and I got it already!He said I am worse,and my muscles dont stop contracting and im very rigid.He said alot of my symps are like parkinsons.I am having Ischemic testing next wk and soon muscle biopsy,he thinks it may be a rare muscle disease.He needs to speak with the neuro,hes in India so he will email him and when hes

back in jan I will see him.My eye has a blind spot and I guess I didnt realize since I compensate with my other eye.hugz,cassyBe a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.Be a better friend, newshound, andknow-it-all with Yahoo! Mobile. Try it now.#AOLMsgPart_ 2_347e3a6d- 671d-46c3- b6fc-5c9377725f0 f#AOLMsgPart_ 2_347e3a6d- 671d-46c3- b6fc-5c9377725f0 f#AOLMsgPart_ 2_347e3a6d- 671d-46c3- b6fc-5c9377725f0 f____________ _________ _________ _________ _________ _________ _More new features than ever. Check out the new AOL Mail ! - http://webmail. aol.com

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Youd be surprised. Lol.

hugz,cassy

Re: Cardio Visit

Who could forget you? ;o)

Challis

Cardio Visit

I seen the cardio.He ordered me a walker with a seat and I got it

already!He said I am worse,and my muscles dont stop contracting and im

very rigid.He said alot of my symps are like parkinsons.I am having

Ischemic testing next wk and soon muscle biopsy,he thinks it may be a

rare muscle disease.He needs to speak with the neuro,hes in India so he

will email him and when hes

back in jan I will see him.My eye has a

blind spot and I guess I didnt realize since I compensate with my other

eye.

hugz,cassy

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it now.

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