THANK YOU FOR YOUR HELP

[Guest guest]

Hi ,

Thank you for your message. We've all been in a similar position at one

time or another and we can learn lots from one another, by sharing our

experiences. I think it helps a little even just to know that we're not

alone, that others have been there before us and understand our worries

and concerns.

Sometimes the medical information can be a little bit scary but the more

we know and understand about JRA, the better prepared we'll be to make

decisions regarding our own child's health care needs. Each case of JRA

is unique and in a forum like this, we have a chance to see a broad

spectrum. Not everything will apply to each individual case but we can

get a pretty good overall picture of JRA and the way it's treated.

I'm glad to hear that has been having some improvements. Hope that

continues. Please keep us updated, let us know how everything goes.

Take care,

Georgina

ps ... your typing skills look absolutely wonderful, from here

john wood wrote:

>

> Hi Georgina

> I want to tell you thanks for all the help this site provides.

> Its scarry sometimes then the next letter is something positive and

> helpful to so many of us.

> is 6 years old February 15 1995 dob we had a hard time getting his

> systemic jra diagnosed we had been to his primary Dr several times for

> what we now know as classic symptoms. His Dr would just blow us off and

> tell us that was healthy and had a virus or something.after a few

> visits to a dermatologist he suggested the rash was possibly JRA.

> we sought out a specialist on our own and found the diagnosis.

> We have been to the rhume twice now first he started the naprox at a dose

>

> of 7.5, we noticed some improvement but by the next appt. the rash and the

> fevers had picked up and the Dr started him on 7.5 mg prednisone (sp?)once

> a day. has shown improvement in pain and i belive his rash and other

> things have improved.

> well im not the greatest typist so again thank you and all the others who

> put up and help the new people as well as the seasoned users.

> Wood

> Columbia Missouri

[Guest guest]

On Sep 19, 2006, at 3:22 PM, marti_zavala wrote:

> Hello all,

> I wish to thank you for your help with my disturbing symptoms. I

> ended up finally driving myself to the emergency room. They ran the

> standard tests. My EKG and heart enzymes were normal. So, I can

> only attribute the pain to my intercostal neuralgia. I believe that

> I must be having spasms or shingles-like activity. The nurse said I

> had all of the symptoms of a heart attack. Unfortunately, my left

> side is my problem side due to my sudden onset bacterial and viral

> issues which entered my body on the left side. The nurse was

> excellent and we devised a way to be able to distinguish the

> difference. Here is the plan:

>

> I will take double the pain medication then wait an hour. If that

> works, then it was nerve ending pain. If it does not, then I will

> take a muscle relaxer and wait an hour. If it works, then it was

> spasms. If it does not work, then I am to head into the Emergency

> Room.

>

Sounds like a plan.

Please remember that, per Cheney, 90% of us have diastolic heart

failure, NOT systolic failure (which is what's measured by an EKG and

enzymes). Even BNP varies so much between men and women, and between

people of different ages, and especially between people with

diastolic and systolic issues, that it's actually worse than useless

for people with diastolic heart disease because it leads doctors to

assume things are OK when they're not.

Please don't assume that because you got the generic ER heart workup

-- which is really aimed at finding heart issues in middle-aged men,

and doesn't have much application to women's heart issues in general

-- you're fine.

I'm speaking from experience here -- have been flattened (literally)

the last two days with serious heart symptoms that I know aren't even

worth taking to the ER. They'll give me the good ol' systolic workup,

tell me it was heartburn, and send me home. This is becoming a common

part of my crash process. It terrifies me, but I might as well be

talking to walls when it comes to getting doctors to pay attention.

It's OK. I'll just die, I guess.

Sara

[Guest guest]

Sara,

Are you injecting Magnesium? It's the best way to get it in there. If you are

already, and tolerate that ok, you can add another shot in the day. Do you have

one of the cream/lotion magnesiums to put directly on chest or forearm. That

helps me too. You can up your MG in any form, assuming you have no problems with

it.

Do you take Hawthorn? I believe that helped me before I got to Dr. Cheney, even

just the chinese version from my local health food store. And now I take it from

MediHerb.

Is there any chance any other factors are elevating your symptoms? You did not

say what the symptoms are, so of course I don't know. I'm going by my own, and

my instructions.

I'm having extra problems right now from a few days of heat, which are very

scary. The off time has thrown me into a serious financial crisis, also making a

stress/depression catch-22...not helping the heart.

I have felt like you do many times, and perhaps sometime it will happen. But it

hasn't happened yet.

I also take small amounts of Diamox which help my heart symptoms. but cannot

tolerate much.

If I either skip important things...like my MG and B-12 injections....or mess

with too much of new things, I end up in trouble.

If you still feel bad lying flat, you can try elevating pillow. Semi-repose.

Fo me, stretching or jiggling feet, besides keeping them up is important.

Even squeezing a ball in hand pumps some blood to heart.

Hope you have some relief soon.

Katrina

>

> > Hello all,

> > I wish to thank you for your help with my disturbing symptoms. I

> > ended up finally driving myself to the emergency room. They ran the

> > standard tests. My EKG and heart enzymes were normal. So, I can

> > only attribute the pain to my intercostal neuralgia. I believe that

> > I must be having spasms or shingles-like activity. The nurse said I

> > had all of the symptoms of a heart attack. Unfortunately, my left

> > side is my problem side due to my sudden onset bacterial and viral

> > issues which entered my body on the left side. The nurse was

> > excellent and we devised a way to be able to distinguish the

> > difference. Here is the plan:

> >

> > I will take double the pain medication then wait an hour. If that

> > works, then it was nerve ending pain. If it does not, then I will

> > take a muscle relaxer and wait an hour. If it works, then it was

> > spasms. If it does not work, then I am to head into the Emergency

> > Room.

> >

>

> Sounds like a plan.

>

> Please remember that, per Cheney, 90% of us have diastolic heart

> failure, NOT systolic failure (which is what's measured by an EKG and

> enzymes). Even BNP varies so much between men and women, and between

> people of different ages, and especially between people with

> diastolic and systolic issues, that it's actually worse than useless

> for people with diastolic heart disease because it leads doctors to

> assume things are OK when they're not.

>

> Please don't assume that because you got the generic ER heart workup

> -- which is really aimed at finding heart issues in middle-aged men,

> and doesn't have much application to women's heart issues in general

> -- you're fine.

>

> I'm speaking from experience here -- have been flattened (literally)

> the last two days with serious heart symptoms that I know aren't even

> worth taking to the ER. They'll give me the good ol' systolic workup,

> tell me it was heartburn, and send me home. This is becoming a common

> part of my crash process. It terrifies me, but I might as well be

> talking to walls when it comes to getting doctors to pay attention.

>

> It's OK. I'll just die, I guess.

>

> Sara

>

[Guest guest]

Marti

Muscle spasms are usually a sign of not enough Magnesium.

Bet the nurse did not tell you that lack of Magnesium can also cause heart

failure and that IV Magnesium is given to folks in the ER with heart attacks.

COnsider increasing your daily intake of Magnesium.

mjh

" The Basil Book "

_http://foxhillfarm.us/FireBasil/_ (http://foxhillfarm.us/FireBasil/)

If it does not, then I will

take a muscle relaxer and wait an hour. If it works, then it was

spasms. If it does not work, then I am to head into the Emergency

Room.

The basis assumption of this plan is that a heart attack will not

respond to pain medication or muscle relaxers.

Is this a valid assumption?

Thank you all,

Marti

[Guest guest]

Oh, Sara! I don't want you to die, so kindly don't. Please recall that Cheney

says it is NOT a deadly condition. I am sorry you are scared and flat.

Would you care to tell us what your symptoms are?

Adrienne

Re: Thank you for your help

On Sep 19, 2006, at 3:22 PM, marti_zavala wrote:

> Hello all,

> I wish to thank you for your help with my disturbing symptoms. I

> ended up finally driving myself to the emergency room. They ran the

> standard tests. My EKG and heart enzymes were normal. So, I can

> only attribute the pain to my intercostal neuralgia. I believe that

> I must be having spasms or shingles-like activity. The nurse said I

> had all of the symptoms of a heart attack. Unfortunately, my left

> side is my problem side due to my sudden onset bacterial and viral

> issues which entered my body on the left side. The nurse was

> excellent and we devised a way to be able to distinguish the

> difference. Here is the plan:

>

> I will take double the pain medication then wait an hour. If that

> works, then it was nerve ending pain. If it does not, then I will

> take a muscle relaxer and wait an hour. If it works, then it was

> spasms. If it does not work, then I am to head into the Emergency

> Room.

>

Sounds like a plan.

Please remember that, per Cheney, 90% of us have diastolic heart

failure, NOT systolic failure (which is what's measured by an EKG and

enzymes). Even BNP varies so much between men and women, and between

people of different ages, and especially between people with

diastolic and systolic issues, that it's actually worse than useless

for people with diastolic heart disease because it leads doctors to

assume things are OK when they're not.

Please don't assume that because you got the generic ER heart workup

-- which is really aimed at finding heart issues in middle-aged men,

and doesn't have much application to women's heart issues in general

-- you're fine.

I'm speaking from experience here -- have been flattened (literally)

the last two days with serious heart symptoms that I know aren't even

worth taking to the ER. They'll give me the good ol' systolic workup,

tell me it was heartburn, and send me home. This is becoming a common

part of my crash process. It terrifies me, but I might as well be

talking to walls when it comes to getting doctors to pay attention.

It's OK. I'll just die, I guess.

Sara

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]

Even squeezing a ball in hand pumps some blood to heart.

My physical therapist recently told me any motion of the arms will do that, too.

Adrienne

[Guest guest]

I just wanted to thank all the wonderful people on this list that have written

to me and given their support and experiences. The other day someone wrote that

the AllDayChemist site was requiring scripts and I though I had lost out but

tonight I did place an order and it went thru without a script. Yippee. The only

thing that worreid me is the Naltrexone is a generic and the website says choose

" similiar in composition " which is Depade or " our brand " which is Naltime. I

wasn';t sure what to cloose but when icheck out they had both names on their so

maybe their the same . I st ill haven;rt got the graduat4ed cylinder but if I

can find a 50 ml glass jar I should be okay. Actually a 50 ml jar is not too big

so I can't imagine this lasting very long. I am going ot styart out with $% mg

at night to see how it goes. It seems the last 4 or 5 days I have been doing a

lot worse than the last 5 yrs. I don't drive much because of my eyesight and

tomorrow I am going to get a pair of crutches because the walking is getting too

painful with the pain across my instep. Though I'm giving up some independence I

think taking care of the pain is the more important.Someone was kind enough to

write to me and sugeest getting Stablon for minor depression, If I had seen that

e-mail before I ordered Naaaaaaltrexone I would have added Stablon. I was also

hoping they might have drugs for my dog that teh vet doesnl;t arry such as

Trmadol but I couldn;t find it. Anyways thank you all for telling me about this

site and all the humanitarian things you do to help others. I feel as if I have

hope now.

Long

[Guest guest]

You can also use a 10cc syringe to measure out the 50 ml of

water. It is cheaper and sometimes easier to find than a

graduate cylinder. Check the baby department in a drug store

for graduated dosing devices also. or a feed store for syringes.

Garnet

beagle10@... wrote:

> I just wanted to thank all the wonderful people on this list that have written

to me and given their support and experiences. The other day someone wrote that

the AllDayChemist site was requiring scripts and I though I had lost out but

tonight I did place an order and it went thru without a script. Yippee. The only

thing that worreid me is the Naltrexone is a generic and the website says choose

" similiar in composition " which is Depade or " our brand " which is Naltime. I

wasn';t sure what to cloose but when icheck out they had both names on their so

maybe their the same . I st ill haven;rt got the graduat4ed cylinder but if I

can find a 50 ml glass jar I should be okay. Actually a 50 ml jar is not too big

so I can't imagine this lasting very long. I am going ot styart out with $% mg

at night to see how it goes. It seems the last 4 or 5 days I have been doing a

lot worse than the last 5 yrs. I don't drive much because of my eyesight and

tomorrow I am going to get a pair of cr

utches because the walking is getting too painful with the pain across my

instep. Though I'm giving up some independence I think taking care of the pain

is the more important.Someone was kind enough to write to me and sugeest getting

Stablon for minor depression, If I had seen that e-mail before I ordered

Naaaaaaltrexone I would have added Stablon. I was also hoping they might have

drugs for my dog that teh vet doesnl;t arry such as Trmadol but I couldn;t find

it. Anyways thank you all for telling me about this site and all the

humanitarian things you do to help others. I feel as if I have hope now.

> Long

>

>

>

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

>

>