Dr visit

[Guest guest]

Hi SHU,

I've gotten emails from a few people in our group who say they're having some

problems since Egroups switched over to . Sorry that you're unable to post

from the website. I hope all these little problems will get worked out and that

things will be back to 'normal' soon.

About your daughter's arthritis .... I'm glad that it's staying mild. And isn't

too painful for her. Especially since she has difficulty with side effects from

NSAIDs. I just worry sometimes, that without aggressive-enough treatment that

long-term damage may be taking place. The NSAIDs really seem to just work on

treating the symptoms of arthritis, anyway. Help with the pain and swelling. The

underlying damage and joint destruction can still be occurring, which is why a

lot of times the doctors will step up to DMARDs if disease doesn't go into

remission. I wonder if your daughter's doctor has ever made any reference to

perhaps trying a weekly dose of MTX? It's even used as a standard in the

treatment of eye involvement. Seems like that might be a better course of action

to take, instead of prednisone. You know, to try to modify the disease process

instead of merely treating the symptoms. Has it ever been suggested? Also, since

her knees are the only joints that are being affected, have they mentioned the

possibility of cortisone injections into the joints? Even that might be better

than a course of oral steroids. Just wondering.

Good Luck,

Georgina

DR Visit

I do not seem to be able to post thur the webpage. Well after playing around

with here knees and ankles since August, Her kness finally swelled. SO I made

an appt for the Rheumy. The veridict, she is having a mild flare -the

Treatment to be decided. We go back in three months, so I am hoping her kness

decrease and maybe we can avoid meds all together. They may put her on

Prednisone for two weeks, but they want to see all her past blood work first.

She is doing great and her pain flucuates and seems to stay on the mild side.

She bleed to much on Nsaids. Thanks SHU

[Guest guest]

Georgina

This is a brand new DR. On Jmy daughters exam she found ,petichee she wants

my daughters past hematology records. Also my daughter has one finger

involved. We have used the cortisone injections in the past, followed by

plaquenal. I do not know this DR at all, and I am not sure how she works. She

seems very stiff, and analytical.

I see your point. But they have never used methotrexate for my daughter. We

have such a strange family hx. As A mother I tend to try not to push

medications. I know I should be less reserved. I guess next week she will

decide what to do. MY daughter has been doing this since August. She also

wants to repeat the lymes tests becasue I pulled a tear tick off my daughter

in June. Thank you. I will let you know what they decide.

SHU

[Guest guest]

Hi SHU,

I understand. It's a difficult situation for us. We worry about unwanted side

effects and what the long-term results may be. Both with and without meds. And

since this is a new doctor, it's probably best to go slowly and cautiously,

taking everything into consideration. I was just curious. I wondered what it

might be like to have a referral to a pediatric rheumatologist who has a

different approach from the ones we've seen. I know the current school of

thought seems to be to treat early and aggressively but it does have to be based

on the way the condition presents itself in each individual child. If the

arthritis isn't severe or long-lasting, they probably don't want to introduce

meds that can have potentially serious side effects. Your letter made me wonder,

though, about how many pediatric rds are out there who are 'old school,' who

still just treat their patients with children's aspirins or the mildest NSAIDs

they can find and leave it at that?

I was thinking more about a personal friend of mine. She has an almost 5 year

old daughter. Has brought her to her pediatrician and because of my son's health

concerns, has even asked about JRA. The doctor didn't feel that she needed to be

seen by a specialist even though this little girl complains of her legs hurting

her, on average, 4 nights a week. Wakes up crying from the pain! I have seen her

knees red and swollen. Her Mom said it's like that a lot. I'd think it should be

looked at more closely. The doctor didn't, so the Mom is okay with things as

they are. She thinks that it's normal for children to have pain as their bodies

grow. I personally don't remember having unexplained pain when I was a child.

But then again, when Josh first got JRA, what did I tell him? That it was

probably 'growing pains'. Her doctor has written a long-standing prescription

for liquid ibuprophin, to be taken on an as-needed schedule. They refill that

prescription about as often as I pick up new meds for Josh. Just seems a bit odd

to me that a doctor would allow a young person to have recurring pain and other

symptoms and then not want to at least explore it further.

I know your daughter's case is different. It's been documented already and in

the past, you've used other things to treat the JRA. It just made me wonder

about the different approaches that doctors may take, if the child being seen is

showing multiple symptoms that last for quite some time, and what it takes to

indicate that a more aggressive treatment may be worthwhile in a particular

child versus another.

See. Sometimes I think too much : )

Aloha,

Georgina

Re: DR Visit

Georgina

This is a brand new DR. On Jmy daughters exam she found ,petichee she wants

my daughters past hematology records. Also my daughter has one finger

involved. We have used the cortisone injections in the past, followed by

plaquenal. I do not know this DR at all, and I am not sure how she works. She

seems very stiff, and analytical.

I see your point. But they have never used methotrexate for my daughter. We

have such a strange family hx. As A mother I tend to try not to push

medications. I know I should be less reserved. I guess next week she will

decide what to do. MY daughter has been doing this since August. She also

wants to repeat the lymes tests becasue I pulled a tear tick off my daughter

in June. Thank you. I will let you know what they decide.

SHU

[Guest guest]

Georgina,

Compassion and love never talk to much. Intelligence always questions. I

appreciate your support and response because it helps me to view things more

aggressively. I tend to hide them. It took me years to except that My other

daughter neeed her inhalers at the firrst signs of whezzing, I often have a

denial problem.

Thanks Shu

[Guest guest]

Angie,

I¹m sorry you have a rheumy that is deaf to your pain. It seems to be a

common problem. I¹m in the same boat you¹re in so we can complain together.

I hope you feel better soon.

a

> I had my 2nd visit with the rheumy today and am not very happy I

> talked to him about the pain and stuff still going on and asked if

> he thought an increase in medicine might help and he just sordof put

> it off and told me to give it more time. I just am so sore, stuff

> and swollen most days that is driving me crazy. Just thought I

> would complain to people who understand

>

> Thanks for listening

> Angie

>

>

>

>

[Guest guest]

So glad to hear of your success!

Can I ask you a personal question?

It is going to sound as if I am obsessed

with weight, since many of my posts will

revolve around that issue - but question

is how is your weight? If you do suffer

from what I like to call the fluffies,

where do you carry that fluff?

I too have the spondy problem, my forward

movement has been measured at 1.7 cm and

is further complicated by forward movement

in the thorasic area and cervicals, but

L4/L5/s1 is my major problem area.

I have battled my weight all my life,

but am willing to admit I am approx 40 +

pounds too heavy. I carry all of my extra

luggage in the abdominal area - which I

suffer from an inherited abdominal weakness

that results in my stomach muscles shredding

like cheese cloth. I had reconstructive

surgery 15 years ago, however they told me

it would only last about 10 years. Doctor

that did the work retired after releasing me,

so finding another doctor to understand this

will be big challenge. Last search took 7 years!

Debi

>

> Had 4 month (almost) checkup today - doing great,he said many

> paitients he did as much to would still be in misery. See him

again

> Nov 16, we discussed probably returning to work at that point, just

> depends on x-rays.

>

> IT CAN WORK !!! (3 level fusiion L4/L5/S1 for spondy. It was a

> ruff go at first, spent an extra week in rehab, don't regret it one

> minute

>

> Kris

[Guest guest]

Debi- how personal, you should know better !! LOL.. I will tell you,

I am significantly overweight, somewhere between obese and not

morbid...and leave it at that. I also suffer from several other

medical problems, including pretty significant High blood pressure

(which has, amazingly gone down sifnificantly since my surgery), gyno

problems, heart arrythmia, and a whole lot more. I was still trying

to exercise so I would be in what I consider in decent shape, at

least geting cardio workout, swimming a mile 1/2 until the back

spasms started last fall. But, as far as the back goes, my original

injury occurred at my lowest adult weight, in the best shape I had

ever been....so go figure.

MY flufffies (I'll have to remember that, I like that) are pretty

well distributed thru my body, most people are suprised when they

hear my weight, thinking I am lower. I am one of these freaky woman,

who despite wearing a 22 size pants, need a b cup bra (most large

sizes would make a ddd for me!)

Kris

> >

> > Had 4 month (almost) checkup today - doing great,he said many

> > paitients he did as much to would still be in misery. See him

> again

> > Nov 16, we discussed probably returning to work at that point,

just

> > depends on x-rays.

> >

> > IT CAN WORK !!! (3 level fusiion L4/L5/S1 for spondy. It was a

> > ruff go at first, spent an extra week in rehab, don't regret it

one

> > minute

> >

> > Kris

[Guest guest]

Debi...you will find a lot of people with back problems carrying to much weight.

The inability to exercise coupled with boredom/depression eating habits don't

help, but are related to the back injury.

The extra weight doesn't help the back either, but we are kind of between a rock

& a hard place.

Viv in GA

[Guest guest]

Debi...you will find a lot of people with back problems carrying to much weight.

The inability to exercise coupled with boredom/depression eating habits don't

help, but are related to the back injury.

The extra weight doesn't help the back either, but we are kind of between a rock

& a hard place.

Viv in GA

[Guest guest]

Jeanne, I can't comment on a life-and-death issue as you describe it. But

the mercury from tuna and the mercury from the vaccine are not the same, as

the vaccine puts it directly into the bloodstream where it will go straight

to the brain and the organs. Toxins through the digestive tract have a

better chance of being eliminated with the feces, especially if your intake

of fiber is good.

Nina

dr visit

I went to my asthma/allergy doctor today as my asthma had really kicked up

after months and months of no problems and using just vitamins, diet, and

magnesium to control it. He was surprised that I was no longer taking any

perscription meds and was curious about the magnesium as far as helping my

asthma, anxiety, and migraines.

I was nebulized in his office as my asthma was so out of control from a

current cold and the drastic change in weather from 85 and humid (north

carolina) and coming back to 65 and cool in Minnesota. He said and you need

to get in next month to get a flu shot. I said I don't know if I want one.

He did not look surprised. I said what about the mercury? what about all

the other crap? He said well I am more worried about the mercury in all the

canned tuna I eat than in this one shot. He said I am getting a shot this

year myself........................as in this was something unusual.

hmmmmmmmm.

What to do , what to do. I am down flat with my asthma when I have a cold

and I seem to get several a year. I don't know if I could survive the flu

if I got it. Anyone have any interesting sites about what the @#%$@# is in

a flu shot besides the vaccine?

Jeanne

[Guest guest]

Thanks for your input Nina.

Jeanne

-------------- Original message --------------

Jeanne, I can't comment on a life-and-death issue as you describe it. But

the mercury from tuna and the mercury from the vaccine are not the same, as

the vaccine puts it directly into the bloodstream where it will go straight

to the brain and the organs. Toxins through the digestive tract have a

better chance of being eliminated with the feces, especially if your intake

of fiber is good.

Nina

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

[Guest guest]

I posted a long interview on the dangers of vaccinations into my blog

earlier today. I put a bit of a preface to the interview which I

feel is important. Not sure if this gets too much into the political

arena for me to post directly onto this list. Here is the URL:

http://www.livejournal.com/users/alobar/1337666.html

Alobar

On 9/26/05, jeanne_simons@... <jeanne_simons@...> wrote:

> I went to my asthma/allergy doctor today as my asthma had really kicked up

after months and months of no problems and using just vitamins, diet, and

magnesium to control it. He was surprised that I was no longer taking any

perscription meds and was curious about the magnesium as far as helping my

asthma, anxiety, and migraines.

>

> I was nebulized in his office as my asthma was so out of control from a

current cold and the drastic change in weather from 85 and humid (north

carolina) and coming back to 65 and cool in Minnesota. He said and you need to

get in next month to get a flu shot. I said I don't know if I want one. He did

not look surprised. I said what about the mercury? what about all the other

crap? He said well I am more worried about the mercury in all the canned tuna I

eat than in this one shot. He said I am getting a shot this year

myself........................as in this was something unusual. hmmmmmmmm.

>

> What to do , what to do. I am down flat with my asthma when I have a cold and

I seem to get several a year. I don't know if I could survive the flu if I got

it. Anyone have any interesting sites about what the @#%$@# is in a flu shot

besides the vaccine?

>

> Jeanne

>

[Guest guest]

Jeanne, Try colostrum to build your immune system. It helps me prevent colds

alomg with my coconut oil.I order bulk from

ruthful@...

she has 1/2 a killo bulk for about 75$.I add it to yogurt smoothies or

puddings.I rarely ever even get the sniffles.

IN NC

jeanne_simons@... wrote:

I went to my asthma/allergy doctor today as my asthma had really kicked up after

months and months of no problems and using just vitamins, diet, and magnesium to

control it. He was surprised that I was no longer taking any perscription meds

and was curious about the magnesium as far as helping my asthma, anxiety, and

migraines.

I was nebulized in his office as my asthma was so out of control from a current

cold and the drastic change in weather from 85 and humid (north carolina) and

coming back to 65 and cool in Minnesota. He said and you need to get in next

month to get a flu shot. I said I don't know if I want one. He did not look

surprised. I said what about the mercury? what about all the other crap? He

said well I am more worried about the mercury in all the canned tuna I eat than

in this one shot. He said I am getting a shot this year

myself........................as in this was something unusual. hmmmmmmmm.

What to do , what to do. I am down flat with my asthma when I have a cold and I

seem to get several a year. I don't know if I could survive the flu if I got

it. Anyone have any interesting sites about what the @#%$@# is in a flu shot

besides the vaccine?

Jeanne

[Guest guest]

I called my doc to ask if she prescribes LDN. She said she is not sure what it

is and we can discuss it at my next visit in a couple of weeks. In the meantime,

I would like to send her some information (short & sweet) and am wondering what

info would be good to send. Does anybody have a recommendation?

I have fibro & hypothyroidism. I am thinking that the Stanford study might be

good. Is there a better, more succinct, option?

Thank you!