Just diagnosed

[Guest guest]

Hi ,

There is a lot to learn about this disease. One great site is

about.com They have a lot of info there. I would look into getting

a new doctor but it's hard to find a thyroid specialist. Sometimes

an endocrinologist is good but sometimes they're not. Same with the

GP. It is important to be checked every six weeks in the beginning

and there is a lot more to it for most people than taking a pill.

I have been hypo for about a year that I know of for sure. Before

that, I took and gained 140 lbs up to 340 in just four years. This

past year I have been maintained but unable to lose.

I have to run now but will write more later.

Janine

> HI!

>

> I was diagnosed with hypothyroidism today. I haven't even picked

up

> my prescription yet. Boy, was this an extreme shock. Then i

started

> reading a little on it saying, WOW! That's me!. I am really having

> mixed emotions about this. My mind keeps saying " but I'm only 28

> years old! this stuff isn't supposed to happen yet! " But two

> relatives have had it sooooo.... I have gained 55 pounds in the

last

> 4 or 5 months, I have been so tired all the time & talk about mood

> swings! i figured I was just depressed because of the weight gain

&

> some homelife stress etc. & I was eating more because of that, you

> know, the vicious cycle & all. It was actually my cardiologist who

> diagnosed me. I was having heart palpitations & since I knew I had

a

> slight murmur it might be a good idea to get myself checked, he did

> the thyroid check as an afterthought. He is a great doctor but

> should I be switching to a specialist for this? I don't know my

> dosage yet but his plan is to put me one a particular dose for 6

> months & then check levels again. This seems like a long time

> between checks especially since I have been reading that the

dosages

> can take a while to get right. Some of the sites I visited were a

> little confusing (not written for the layman), if you could suggest

> some sites & give me some info I would really appreciate it, i am a

> little scared to be honest. I know this isn't life threatening but

> there is till something wrong with my body. My family seems to

have

> an attitude of just take the pills & what's the big deal. Should I

> be looking at it that way too? This seems to be a little more

> involved than a cold! Please help me, I know I may sound a little

> scattered but I am still digesting this.

> THANK YOU!!

>

[Guest guest]

I just joined up yesterday or day before but I have

NOT been dx'd. I was dx'd with Fibromyalgia several

years ago and went to a new doctor that wanted to do

some bllod work to check my thyroid since the symptoms

of FM and Hypo are about the same. I almost hope I

have the hypothyroidism since at least there seems to

be something they can do for that other than shove

pain pills in your hand.

=====

Lou

http://www.makemeacake.com

http://www.cookingtexas.com

http://www.piesandpastries.com

http://www.lifeinthecountry.com

__________________________________________________

[Guest guest]

Lou,

Visit the website drlowe.com He is a doctor who specializes in

hypothyroidism and fibromyalgia. The two go hand in hand quite

often, and Dr. Lowe's research is starting to show that fibromyalgia

patients benefit from a combination of T4 and T3 hormone replacement

(thyroid meds.).

These meds. seem to take away a lot of the pain and other effects of

fibromyalgia.

Good Luck!

> I just joined up yesterday or day before but I have

> NOT been dx'd. I was dx'd with Fibromyalgia several

> years ago and went to a new doctor that wanted to do

> some bllod work to check my thyroid since the symptoms

> of FM and Hypo are about the same. I almost hope I

> have the hypothyroidism since at least there seems to

> be something they can do for that other than shove

> pain pills in your hand.

>

> =====

> Lou

> http://www.makemeacake.com

> http://www.cookingtexas.com

> http://www.piesandpastries.com

> http://www.lifeinthecountry.com

>

> __________________________________________________

>

[Guest guest]

I'll check the site out RIGHT now. Although I'm not

sure what I'd do if I ever had NO pain, LOL ..... I'd

think I was dead, unless of course it was in the

winter time.

--- wolf_lady4 <shimiah@...> wrote:

> Lou,

>

> Visit the website drlowe.com He is a doctor who

> specializes in

> hypothyroidism and fibromyalgia. The two go hand in

> hand quite

> often, and Dr. Lowe's research is starting to show

> that fibromyalgia

> patients benefit from a combination of T4 and T3

> hormone replacement

> (thyroid meds.).

>

> These meds. seem to take away a lot of the pain and

> other effects of

> fibromyalgia.

>

> Good Luck!

>

>

>

>

> > I just joined up yesterday or day before but I

> have

> > NOT been dx'd. I was dx'd with Fibromyalgia

> several

> > years ago and went to a new doctor that wanted to

> do

> > some bllod work to check my thyroid since the

> symptoms

> > of FM and Hypo are about the same. I almost hope I

> > have the hypothyroidism since at least there seems

> to

> > be something they can do for that other than shove

> > pain pills in your hand.

> >

> > =====

> > Lou

> > http://www.makemeacake.com

> > http://www.cookingtexas.com

> > http://www.piesandpastries.com

> > http://www.lifeinthecountry.com

> >

> > __________________________________________________

> >

[Guest guest]

-

Hi !

Welcome to the board. I want to tell you that you are not alone. I

had the same feelings and thoughts when I was first diagnosed about a

year ago.

I have learned that the heart palpitations can be due to a lack of

calcium. And that you have to take a calcium PLUS magnesium

suppliment together because your body has a really hard time

absorbing calcium by itself.AND that some thyroid meds make it hard

to absorb the calcium too so take them at different times of the day

*smiles*

I hear you have some fear and yet are relieved that you may finally

have an answer that you can " do " something with. That has to feel

good right?

It all takes some time. Be gentle with yourself.

On the specialist " issue " ...I don't ave a specialist...I think it

depends really on how you FEEL about t all...I am a " researcher " by

nature and I am disciplined enought to try this herb this week and

can read my body well enough to tell whether it is going to work for

me or not. You may be too...but just haven't had anything much to

deal with until now. I have learned that this manifestation of this

illness has been a huge gift and has taught me a whole bunch of GREAT

lessons. Any where from trust to realizing I am a very smart woman

and I can do A LOT for my own health. That is empowering to know.

The time frame...6 months...every doctor is different. I LOVE mine

cause he basically lets me do what I want...sometimes i understand

people can't work with a docotr like that, but I can so it's good for

me. Go by how you feel...it does take time for the human body to

absorb and assimilate the " added hormone therapy " ...longer for

synthetic like Levoxyl or Synthroid and less time for Armour (

natural pig thyroid suppliment). Once again...go by how you

feel..and get to know your body...listen..get quiet and listen

somemore...the human body is amazing and will speak...your job is to

get in touch and listen :-)

As an example of this...I just had my blood drawn yesterday ( have

been diagnosed for a year and not " stable " yet)...now if my docotr

comes back and says I want to raise it just a bit...I'm going to say

" no " this time...I FEEL REALLY good...and my " normal " may not be the

" norm " the doctors use. I use that as a " guide line " I use how I

feel as my GUIDE. :-)

" scattered " is okay...you have to have scattered most of the time

BEFORE you get to " order " ...you're on the right path...

I will look forward to hearing more from you...

How are you doing today? ( Wednesday)

~Amy~

-- In hypothyroidism@y..., " heatherlevesque "

<heatherlevesque@y...> wrote:

> HI!

>

> I was diagnosed with hypothyroidism today. I haven't even picked

up

> my prescription yet. Boy, was this an extreme shock. Then i

started

> reading a little on it saying, WOW! That's me!. I am really having

> mixed emotions about this. My mind keeps saying " but I'm only 28

> years old! this stuff isn't supposed to happen yet! " But two

> relatives have had it sooooo.... I have gained 55 pounds in the

last

> 4 or 5 months, I have been so tired all the time & talk about mood

> swings! i figured I was just depressed because of the weight gain

&

> some homelife stress etc. & I was eating more because of that, you

> know, the vicious cycle & all. It was actually my cardiologist who

> diagnosed me. I was having heart palpitations & since I knew I had

a

> slight murmur it might be a good idea to get myself checked, he did

> the thyroid check as an afterthought. He is a great doctor but

> should I be switching to a specialist for this? I don't know my

> dosage yet but his plan is to put me one a particular dose for 6

> months & then check levels again. This seems like a long time

> between checks especially since I have been reading that the

dosages

> can take a while to get right. Some of the sites I visited were a

> little confusing (not written for the layman), if you could suggest

> some sites & give me some info I would really appreciate it, i am a

> little scared to be honest. I know this isn't life threatening but

> there is till something wrong with my body. My family seems to

have

> an attitude of just take the pills & what's the big deal. Should I

> be looking at it that way too? This seems to be a little more

> involved than a cold! Please help me, I know I may sound a little

> scattered but I am still digesting this.

> THANK YOU!!

>

[Guest guest]

HI!

After a few days on the meds I was getting really upset. I take my meds about 10AM & would feel great until about 3 or 4PM then just crash, actually feeling worse than before I started meds. So tired I could hardly move & mood swings like crazy. Even before I was diagnosed I knew I was B deficient so when I would get really under the weather I would take a B12 & B100 & it really made a difference. So I figured i would wait until about 2:30 when the feeling awful kicked in & take my B's EVERYDAY (which I did not do before) & see if that helped. Yesterday was the first day I did this & it really helped as far as the mood swings but I still got really exhausted so i did go & lay down for about an hour, I felt alot better after that. So maybe that is the recipe right now. I called my GP yesterday about taking over my care, i hope to talk to her today. The Doc that diagnosed me is from India, which in itself is not a problem but he has a very thick accent & I can't understand a portion of what he says & i get the feeling he doesn't always get all that I say either & I have alot of questions I need answered definitively. As an addded bonus my GP is also within walking distance. I feel a little better about things today, I feel like I am taking control of this a little, control freak that I am. Another thing I am a little confused about is that compared to some of the TSH levels everyone has talking about mine is not that high (8.89) & I am on a minimal dose of Synthroid (.05MG) but my symptoms & changes have been so extreme.

A couple people have mentioned that this condition caused a diminished sex drive. I was really surprised to read that. I thought my problem in that area had to do with my son & the mommy Syndrome you always hear about on the talk shows that says a mother sometimes has a hard doing the transition from mother to wife after being Mommy all day. This is really far reaching isn't it!? Geez!

Thanks for listening!

[Guest guest]

Diminished sex drive? I'm glad that I don't have that symptom.

You aren't alone. My TSH was orginally 6.4 and I didn't really know

there was a problem....UNTIL I began reading and realizing that I

really haven't felt good in a long time. I just figured that it was

poor sleeping habits and stress from being in college. I am also

taking a small dose like you.

My TSH has been just under 2 but I still haven't been feeling good.

My doctor thinks that I might be subclinical and have problems with

the T3. So I did body temps every morning and found out that my temp

was only 97.1! Duh, the dr asked if I had a low body temp and I was,

I don't know...I don't take my temperature unless I have a fever. LOL

So now I do know that I'm rather low. I might be going on armour at

the end of May.

Janine

>

> HI!

>

> After a few days on the meds I was getting really upset. I take my

meds about 10AM & would feel great until about 3 or 4PM then just

crash, actually feeling worse than before I started meds. So tired I

could hardly move & mood swings like crazy. Even before I was

diagnosed I knew I was B deficient so when I would get really under

the weather I would take a B12 & B100 & it really made a difference.

So I figured i would wait until about 2:30 when the feeling awful

kicked in & take my B's EVERYDAY (which I did not do before) & see if

that helped. Yesterday was the first day I did this & it really

helped as far as the mood swings but I still got really exhausted so i

did go & lay down for about an hour, I felt alot better after that. So

maybe that is the recipe right now. I called my GP yesterday about

taking over my care, i hope to talk to her today. The Doc that

diagnosed me is from India, which in itself is not a problem but he

has a very thick accent & I can't understand a portion of what he says

& i get the feeling he doesn't always get all that I say either & I

have alot of questions I need answered definitively. As an addded

bonus my GP is also within walking distance. I feel a little better

about things today, I feel like I am taking control of this a little,

control freak that I am. Another thing I am a little confused about

is that compared to some of the TSH levels everyone has talking about

mine is not that high (8.89) & I am on a minimal dose of Synthroid

(.05MG) but my symptoms & changes have been so extreme.

>

> A couple people have mentioned that this condition caused a

diminished sex drive. I was really surprised to read that. I thought

my problem in that area had to do with my son & the mommy Syndrome you

always hear about on the talk shows that says a mother sometimes has a

hard doing the transition from mother to wife after being Mommy all

day. This is really far reaching isn't it!? Geez!

>

> Thanks for listening!

>

>

>

>

>

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

>

[Guest guest]

Diminished sex drive is a good thing for me since I

don't have a partner at present and am too old and fat

to go bar hopping LOL

--- janine912 <no_reply > wrote:

> Diminished sex drive? I'm glad that I don't have

> that symptom.

>

> You aren't alone. My TSH was orginally 6.4 and I

> didn't really know

> there was a problem....UNTIL I began reading and

> realizing that I

> really haven't felt good in a long time. I just

> figured that it was

> poor sleeping habits and stress from being in

> college. I am also

> taking a small dose like you.

> My TSH has been just under 2 but I still haven't

> been feeling good.

> My doctor thinks that I might be subclinical and

> have problems with

> the T3. So I did body temps every morning and found

> out that my temp

> was only 97.1! Duh, the dr asked if I had a low

> body temp and I was,

> I don't know...I don't take my temperature unless I

> have a fever. LOL

> So now I do know that I'm rather low. I might be

> going on armour at

> the end of May.

>

> Janine

>

>

>

>

> >

> > HI!

> >

> > After a few days on the meds I was getting really

> upset. I take my

> meds about 10AM & would feel great until about 3 or

> 4PM then just

> crash, actually feeling worse than before I started

> meds. So tired I

> could hardly move & mood swings like crazy. Even

> before I was

> diagnosed I knew I was B deficient so when I would

> get really under

> the weather I would take a B12 & B100 & it really

> made a difference.

> So I figured i would wait until about 2:30 when the

> feeling awful

> kicked in & take my B's EVERYDAY (which I did not do

> before) & see if

> that helped. Yesterday was the first day I did this

> & it really

> helped as far as the mood swings but I still got

> really exhausted so i

> did go & lay down for about an hour, I felt alot

> better after that. So

> maybe that is the recipe right now. I called my GP

> yesterday about

> taking over my care, i hope to talk to her today.

> The Doc that

> diagnosed me is from India, which in itself is not a

> problem but he

> has a very thick accent & I can't understand a

> portion of what he says

> & i get the feeling he doesn't always get all that I

> say either & I

> have alot of questions I need answered definitively.

> As an addded

> bonus my GP is also within walking distance. I feel

> a little better

> about things today, I feel like I am taking control

> of this a little,

> control freak that I am. Another thing I am a

> little confused about

> is that compared to some of the TSH levels everyone

> has talking about

> mine is not that high (8.89) & I am on a minimal

> dose of Synthroid

> (.05MG) but my symptoms & changes have been so

> extreme.

> >

> > A couple people have mentioned that this condition

> caused a

> diminished sex drive. I was really surprised to

> read that. I thought

> my problem in that area had to do with my son & the

> mommy Syndrome you

> always hear about on the talk shows that says a

> mother sometimes has a

> hard doing the transition from mother to wife after

> being Mommy all

> day. This is really far reaching isn't it!? Geez!

> >

> > Thanks for listening!

> >

> >

> >

> >

> >

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

> >

[Guest guest]

If you do not have liver damage, meaning you do NOT have Fibrosis,

you do not need to do the treatment right now. BUT...a CT scan will

not show fibrosis so he needs to do a liver biopsy to be sure. CT

scans will show scarring from Cirrhosis but not Fibrosis. Don't even

consider treatment until the biopsy is done and you have the results.

With being a Genotype 1a I would not treat unless I new I was at

least STAGE 3 GRADE 2 in liver damage. This is bridging fibrosis,

meaning it covers the entire liver. I am also 1a and have never

responded to any of the treatments, but am in the HALT-C study at

USC. I did not respond to the Peg/Riba either. We have the most

difficult genotype when it comes to treatment.

Tell your dr you want a biopsy before you decide. It is standard

practice to do a biopsy prior to treatment decisions.

LeighAnn

http://www.geocities.com/1Leighann

> Hi! I found out recently I have Hepatitis C, and I've been worried

> about it ever since....

>

> The gastroenterologist I consulted did blood tests and sent me for

a

> CT scan. Results: Genotype 1a (), no irreversible liver damage

().

> He still wants to start me on Peg-Intron. He figures at my age

(48),

> there would be less chance of success if we waited.

>

> I've heard so many horror stories about Interferon, I don't know if

> it's worth the trouble... 48 weeks of expensive drugs and no

assurance

> of being cleared...

>

> What do you think?

>

>

> Roy Fenimore...

> visit my shop at http:\\fenimores.vstoregifts.com

> ---

> [This E-mail scanned for viruses by Declude Virus]

[Guest guest]

If you do not have liver damage, meaning you do NOT have Fibrosis,

you do not need to do the treatment right now. BUT...a CT scan will

not show fibrosis so he needs to do a liver biopsy to be sure. CT

scans will show scarring from Cirrhosis but not Fibrosis. Don't even

consider treatment until the biopsy is done and you have the results.

With being a Genotype 1a I would not treat unless I new I was at

least STAGE 3 GRADE 2 in liver damage. This is bridging fibrosis,

meaning it covers the entire liver. I am also 1a and have never

responded to any of the treatments, but am in the HALT-C study at

USC. I did not respond to the Peg/Riba either. We have the most

difficult genotype when it comes to treatment.

Tell your dr you want a biopsy before you decide. It is standard

practice to do a biopsy prior to treatment decisions.

LeighAnn

http://www.geocities.com/1Leighann

> Hi! I found out recently I have Hepatitis C, and I've been worried

> about it ever since....

>

> The gastroenterologist I consulted did blood tests and sent me for

a

> CT scan. Results: Genotype 1a (), no irreversible liver damage

().

> He still wants to start me on Peg-Intron. He figures at my age

(48),

> there would be less chance of success if we waited.

>

> I've heard so many horror stories about Interferon, I don't know if

> it's worth the trouble... 48 weeks of expensive drugs and no

assurance

> of being cleared...

>

> What do you think?

>

>

> Roy Fenimore...

> visit my shop at http:\\fenimores.vstoregifts.com

> ---

> [This E-mail scanned for viruses by Declude Virus]

[Guest guest]

Hello pnegron:

I've never had the popping or giving out so I can't really help with

those, but I do have some general advice...

You said, " there are several things wrong with (your) knee --

chondromalacia, possible cyst under the patella, a lesion. "

I'd say that the chondromalacia and the lesion are more accurately

described as two things that you got because there is SOMETHING ELSE

WRONG with your knee. Like, for example, it dislocated on you, you

have weak supporting structures (ligaments, tendons and/or muscles),

or you have a mal-aligned kneecap. Perhaps the cyst (if you have

one) is causing your problems by displacing your kneecap.

The CP and the popping out are the end results of some other

disfunction. My advice is to find out what that other disfunction

is, what is truly wrong with your knee, then you can go about trying

to fix it.

I post the same advice all the time on this Group... Try to find a

doctor who will give you a thorough (1 - 2 hour) exam. The 10

minute " does this hurt, does that hurt " exam just doesn't cut it.

You may have some luck with pain specialists, osteopathic doctors,

or doctors of applied kinesiology -- any doctor who takes a more

holistic approach to medicine. You also may get lucky and find

a " good " chiropractor or physical therapist. It can be any type of

medical practitioner, as long as he or she takes an interest in what

is wrong with you and is willing to take the time to figure out what

that is.

In my case, although the pain was in my knee, the real problem was a

mal-alignment of my hips. Two doctors and a physical therapist

missed the hip problem completely. A pain specialist found it and

fixed it.

Please ask questions and feel free to provide more info about your

knees. You've got to spend a lot of time on your own, researching

different treatment methodologies and learning about the anatomy of

the knee. It will help you " be your own doctor " which, I believe,

is vital to you getting better. And you will get better. It will

just take alot of time and alot of work but you will get better.

I've rambled long enough for now...

Good luck,

Doug

dougfromct2002@...

P.S. - Your physical therapy shouldn't hurt very much, with the

exception of " good " pain like you get from muscles being worked. If

an exercise is hurting you, be sure to tell the therapist.

> Hi,

> A few months ago I experienced the weirdest thing while I was in

bed-

> I went to straighten out my leg something " popped " and I couldn't

> straighten it for a half hour. The next day it was a little sore

but

> it went away and I thought nothing of it...It happened again while

I

> was walking, and this time I couldn't straigthen it for an

hour..and

> then the third time it just kept happening -6 times a weekend to

be

> exact. My doctor said " oh you probably just sprained your knee "

until

> I complained about it happening 6 times over the weekend he got

> concerned..and also didn't understand when I said my knee doesn't

> feel like it goes from under me (foward) but actually backwards?!

He

> sent me for an MRI-and low and behold there are several things

wrong

> with my knee-chondromalacia, possible cyst under the patella, a

> lesion-you name it. So I begin therapy next week-can't wait to

> experience the pain! I have read alot of webpages-what works?

does

> the glucoasamine work for anyone? Do you swear by the benefits of

> your brace? I am not sure what to expect? Any info would be

helpful.

> Thanks

[Guest guest]

Hi dougfromct2002,

My doctor unfortunately is my primary-he said after pt he might refer me to an

orthopedist.. I kind of feel like I should go anyway-the possible cyst and

spurring scares me (i am only 26) and need my knee for a loooong time. I

actually do have weak muscles-everyone tells me that (I have had Ot) and she

told me also-no matter what I do working out they seem to be weak muscles...Ever

since I found out my results-I researched the possibilities-I work in the

healthcare field with special needs children and have had PT's look at my MRI

results-only problem is that they see kids not adults with these issues. The

MRI also said I have degenerative changes int he knee so that is why they gave

me the diagnosis of chondromalacia... I also have increased amount of water in

the knee? Don't they drain that? The doc said one step at a time- I begin PT

next week and hope my PT can give me more info-ever since my knee popped out 6

times- it hurst when I drive when I walk, when I get up from sitting, or just

because it wants to...If you have more info I would greatly appreciate it.. Your

comment was very helpful-I do want to get proactive and get this taken care of

or at least understand it... I don;t like taking pills for the pain-which he

prescribed one-I haven't taken it in 2 weeks-I would rather learn about other

ways to deal with this that is why I asked about glucosamine..

Thanks

pnegron1

dougfromct2002 <dougfromct2002@...> wrote: Hello pnegron:

I've never had the popping or giving out so I can't really help with

those, but I do have some general advice...

You said, " there are several things wrong with (your) knee --

chondromalacia, possible cyst under the patella, a lesion. "

I'd say that the chondromalacia and the lesion are more accurately

described as two things that you got because there is SOMETHING ELSE

WRONG with your knee. Like, for example, it dislocated on you, you

have weak supporting structures (ligaments, tendons and/or muscles),

or you have a mal-aligned kneecap. Perhaps the cyst (if you have

one) is causing your problems by displacing your kneecap.

The CP and the popping out are the end results of some other

disfunction. My advice is to find out what that other disfunction

is, what is truly wrong with your knee, then you can go about trying

to fix it.

I post the same advice all the time on this Group... Try to find a

doctor who will give you a thorough (1 - 2 hour) exam. The 10

minute " does this hurt, does that hurt " exam just doesn't cut it.

You may have some luck with pain specialists, osteopathic doctors,

or doctors of applied kinesiology -- any doctor who takes a more

holistic approach to medicine. You also may get lucky and find

a " good " chiropractor or physical therapist. It can be any type of

medical practitioner, as long as he or she takes an interest in what

is wrong with you and is willing to take the time to figure out what

that is.

In my case, although the pain was in my knee, the real problem was a

mal-alignment of my hips. Two doctors and a physical therapist

missed the hip problem completely. A pain specialist found it and

fixed it.

Please ask questions and feel free to provide more info about your

knees. You've got to spend a lot of time on your own, researching

different treatment methodologies and learning about the anatomy of

the knee. It will help you " be your own doctor " which, I believe,

is vital to you getting better. And you will get better. It will

just take alot of time and alot of work but you will get better.

I've rambled long enough for now...

Good luck,

Doug

dougfromct2002@...

P.S. - Your physical therapy shouldn't hurt very much, with the

exception of " good " pain like you get from muscles being worked. If

an exercise is hurting you, be sure to tell the therapist.

> Hi,

> A few months ago I experienced the weirdest thing while I was in

bed-

> I went to straighten out my leg something " popped " and I couldn't

> straighten it for a half hour. The next day it was a little sore

but

> it went away and I thought nothing of it...It happened again while

I

> was walking, and this time I couldn't straigthen it for an

hour..and

> then the third time it just kept happening -6 times a weekend to

be

> exact. My doctor said " oh you probably just sprained your knee "

until

> I complained about it happening 6 times over the weekend he got

> concerned..and also didn't understand when I said my knee doesn't

> feel like it goes from under me (foward) but actually backwards?!

He

> sent me for an MRI-and low and behold there are several things

wrong

> with my knee-chondromalacia, possible cyst under the patella, a

> lesion-you name it. So I begin therapy next week-can't wait to

> experience the pain! I have read alot of webpages-what works?

does

> the glucoasamine work for anyone? Do you swear by the benefits of

> your brace? I am not sure what to expect? Any info would be

helpful.

> Thanks

[Guest guest]

Priscilla:

As I said in my last post, you need to find a doctor who understands

the body and all the types of disfunctions that lead to painful

joints.

In my case, my primary care physician was useless. He examined me

for 10 minutes, told my I had chondromalacia and that I should give

up running. I had to practically beg him for a referral to an

orthopedic surgeon. When I saw the OS, he told me the same thing.

He said I had CP, that I wasn't " built to be a runner " and that I

should take some Aleve or another NSAID if it hurt.

Well, for the last 8 months, I've been running 25 to 30 miles per

week and competing in triathlons (swin, bike, run) -- all without

pain and without a single tablet of an NSAID.

It isn't that they are " bad " doctors; they just don't know enough.

It seems like they were taught in medical school that if someone

has " burning pain around the kneecap " the diagnosis is

Chondromalacia Patellae. We all know that knees are more

complicated than that.

As far as Glucosamine goes, there are some in this Group that say it

has helped and some that can't say for sure. My father, who is 70

years old, says his joints felt better after he started to take

Glucosamine and Chondroitin (G/C), but we all know how strong the

placebo effect can be. I really have no opinion myself, other

than " I don't think it can hurt. " A good place to gather some

information is:

http://www.drtheo.com

That is the website of the guy who wrote " The Arthritis Cure. " Dr.

Theo is a big proponent of G/C supplementation. Make sure you find

his list of brands that are good and those to avoid.

I believe you doing the right thing by staying away from the pain

meds. If you don't " really " need them, don't take them. Even non-

prescription NSAIDs can interfere with the healing process.

It is, of course, impossible for me, or anyone in the Group, to

diagnose your problem. Nor can you expect any one doctor to

diagnose you correctly, especially not your PCP. Demand a referral

from your primary to see someone else. Be persistant. You need to

figure out what is wrong for your PT to be effective.

Keep learning and keep thinking positively! And feel free to E-mail

me.

- Doug

dougfromct2002@...

> > Hi,

> > A few months ago I experienced the weirdest thing while I was in

> bed-

> > I went to straighten out my leg something " popped " and I

couldn't

> > straighten it for a half hour. The next day it was a little

sore

> but

> > it went away and I thought nothing of it...It happened again

while

> I

> > was walking, and this time I couldn't straigthen it for an

> hour..and

> > then the third time it just kept happening -6 times a weekend to

> be

> > exact. My doctor said " oh you probably just sprained your knee "

> until

> > I complained about it happening 6 times over the weekend he got

> > concerned..and also didn't understand when I said my knee

doesn't

> > feel like it goes from under me (foward) but actually

backwards?!

> He

> > sent me for an MRI-and low and behold there are several things

> wrong

> > with my knee-chondromalacia, possible cyst under the patella, a

> > lesion-you name it. So I begin therapy next week-can't wait to

> > experience the pain! I have read alot of webpages-what works?

> does

> > the glucoasamine work for anyone? Do you swear by the benefits

of

> > your brace? I am not sure what to expect? Any info would be

> helpful.

> > Thanks

>

>

>

[Guest guest]

Steve

Same thing here. Doctor indicated he could do both procedures in one

surgery. After reading a lot of these post I'm no so sure. Have next

appointment in two weeks. Hopefully by then I'll be able to ask some

intelligent questions. Fred

> Hi. I was just diagnosed with a very small (several milimeters)

> Cholesteatoma in my left ear. It was discovered after lingering

> effects of an ear infection did not dissapate. Naturally, I am

> afraid of the surgery. The doctor plans to remove the cholesteatoma

> and repair the bones in a single surgery. I was wondering if anyone

> in this group has been in a similar situation. What should I expect

> in the way of pain after the surgery and side effects? How long do

I

> need to wear a bandage? And typically how long should it take to

> feel myself again? Any insight would be greatly appreciated. Thank

> you.

>

> Steve

[Guest guest]

Hi ,

If you want, send us your CBC results, type them in like on the CBC paper, you know WBC 78, RBC 415, Hgb 12.4 platelets 145 etc. etc. Also tell us if you have an enlarged spleen or lymph nodes, if you are feeling Anemic? or fatigued?

Mainly if you are newly diagnosed usually you are not in any danger for a good while. Possibly a year or three. Depends upon how quickly your counts go up in a 6 month period. Also what happens to your Hgb, Hct, platelets, the size of your spleen, if you get lymph nodes swelling up, if you get Anemia or Neutropenia etc. If all those things are happening then you have a very agressive form of CLL and you should consider taking Rituxan which is a very mild and safe treatment for CLL and is working extremely well for most patients and many patients are using it to maintain their CLL for a long period of time.

My opinion, stay away from Fludurabine or Cytoxin or Cyclosphomide or CHOP or Campath or RFC or FC or F any of those if possible at first. If your CLL is so agressive that several docs say you need the heavier Chemo first.........then you have to consider it. But, my opinion, If you take anything, one of the best treatments "If you need it by having all the above symptoms, like I said before is Rituxan and/or several options of Rituxan with a mild mixture. Like Chlormabucil a mild Chemo or many other things that people are taking with Rituxan.

Anyway, every doctor you see will give you a different opinion and every patient you talk to will give you a different opinion, but thats simply because there is no cure. No one has found any treatment that is always good or always works for anyone. It's a terminal disease, it's not curable. Were all different. But with luck you can manage it for some years.

I know and have definite ideas because I am a CLL patient. So I have my opinions. I am not a doctor. I was so sick I was critical, then I took my own designed protocol of mild treatments and now at the moment my CBC is normal. So, naturally I believe what I did is best, how can I believe otherwise? but it probably won't work for everyone.

So, see what kind of responses you get, but definitely see some CLL experts as doctors for "several different opinions" and my advice is to consider mild treatments first before taking any heavy Chemo's because Chemo's damage your immune system and your marrow. I suggest holding the heavier treatments in second position if the mild treatments don't work. You can always take the heavier treatments later. Again, my opinion only. Again depending upon your numbers and your body's condition.

Ok, let us know if you want, Good luck whatever you do.

Cheers, Kurt

just diagnosed

Hi, I've just been diagnosed with CLL and I want to know if you can tell me what specific blood tests are needed to keep track of it. My hematologist just wants to do a regular cbc test every 3 months. But this is the same dr. who has been testing my blood for a year and told me I didn't have leukemia even when I complained of brusing, chronic sinus infections, extreme fatigue. So I don't have much faith in him. I live in Las Vegas and I would like to see a specialist that treats CLL since there are none in Nevada. Any suggestions? Thanks

[Guest guest]

Dear

Kurt,

I reviewed your answer to 'just diagnosed' and I m very interested in

your own protocol. My oncologist say that when the time is ready

and I'm guessing it will be sooner rather than later, that he would only

us e that drug you used, chrolomucil (incorrect spelling, sorry) without

rituxan. He feels that since I m 75 even though I have the markers for

progressive CLL, 100%CD38, unmutated IVGH,, thoug low ZAP70. How does

that sound to you?

Thanks

edie

[Guest guest]

Hi - the CBC is indeed the best indicator, but if you have no faith in your present guy, you should have it done elsewhere, and interpreted by someone who is more on top of things. Get the CBC "with differential", that analyses your lymphocyte and neutrophil levels, which is important to know, tells you how clogged your blood is with the bad guys.

I don't know much about Nevada, but Dr. Kipps at the Univ. of Cal. in San Diego, can't be too far, is a top guy, cutting edge.

Good health!

Balan

[Guest guest]

Hi edie,

Your age really doesn't have anything to do with it. Many doctors have the idea that if you are 75 that you are old, half dead and they don't want to go the full mile. They mean well, but they are wrong. They need to take the time to treat you just as well as a 35 yr old. Meaning that just giving you Chlorambucil is certainly a safe and mild treatment "IF" it's given in a low dose, but it is more of a mask than a treatment. Sometimes, rarely, Chlorambucil will give a temporary remission to a CLL patient that lasts up to 2 or three years so it's OK to try it if it's given in a low dose regimen, like 2 to 4mg every day or every other day. If you also have swollen nodes you can usually be given prednisone at 20 to 40mg a day or every other day. Taking Chlorambucil or Prednisone in higher doses is considered to be too high and can cause your body damage to the immune system and the marrow.

If you don't have swollen nodes then low dose Chlorambucil by itself can be helpful "sometimes". However, if you really want to be put into remission or into a managable treatment that you can control, it is much wiser to take a course of Rituxan by itself as it is a monoclonal antibody that attacks only one thing, the CD20 marked cells in your blood and body. Chemo attacks everything just like shooting with a shotgun. So to take Rituxan is very safe usually regardless of your age. There has been no evidence that Rituxan is harder on older people! The only thing you have to watch out for with Rituxan is the first time or two that you take it. Sometimes because it's a foreign substance your body isn't used to your body will have an allergic reaction. So, to contol this so that it's not dangerous to you, usually the infusion specialists or doctors will give you a low dose treatment the first time, say 100ml instead of 375 and they will also give you benedryl and decadron or some similar steroid to make sure your body doesn't have an agressive or dangerous reaction. Then after the first time your body usually doesn't have a bad reaction after that. However, if in your infusion at any time, if you begin to get cold and start to shake they should immediately stop the Rituxan and immediately give you some demerol or other meds to calm down your body. Good infusion centers will explain all this to you before your treatment so that you can be prepared and won't be surprised.

Also there are many other supplements and meds that are mixed with Rituxan at certain times to help with the effect of Rituxan. An informed doctor will know some of these and will help you prepare by using them prior to your treatment. Also, in my opinion, but again I'm just a patient not a doctor, but a person who has studied CLL, my protocol was very successful although it's not used by anyone. No one has ever tried what I took before. Not because it's dangerous, just because it never occurred to them. I took Rituxan for a full cycle of 12 treatments and then I immediately took a low dose Chlorambucil regimen. I took 4mg every day or every other day for two months. The combination of both Rituxan and Chlorambucil combines two mild medicines that do not have a history of harming the immune system or the marrow. By taking them together the response in my case gave me a totally normal blood count at CBC. However, it took me almost a year to arrive at a normal blood count after teatment. The reason for that was most likely because I waited way too long to take any treatment. I waited until I had a WBC of 500,000 and a huge swollen spleen and very big swollen nodes and Anemia with bad counts all up and down my CBC and I was critically ill when I began treatment. At the time I believed that waiting as long as possible before treatment was the best thing. To buy time. I now think I was wrong. I think that treating before the body gets so sick is a much better thing to do.

Anyway, using Rituxan and chlorambucil are normally safe when given in normal or low dose regimens. Also, there is no evidence that they are dangerous when used together. So, since Chlorambucil is an old medicine thats been around forever many doctors give you a large dose once a month. This is the dangerous way to take Chlorambucil. The once a month or twice a month large dose is what can cause harm to the immune system or the marrow. So, if you take it right after taking your Rituxan infusion, make sure you take it in low dose form, every day or every other day at no more than 2 to 4 mg for a month or two at the most. That way no permanent damage will occur in your body. The combination of Rituxan and Chlorambucil is an excellent safe method of being treated because they are both mild treatments and they both attack the CLL cells from two different directions. Also the synergy of the two together has been shown to be somewhere a 70% positive response. This is just about as good as any of the other combinations of hard Chemo like RFC or Fludurabine or FC or CHOP or Campath, all of those are hard chemo's and even when they do produce a 70% response they also damage your immune system and marrow beyond a doubt and the body many times never recovers in all the counts of the CBC. So many people are going around with no CLL cells, which is good, but their marrow is so damaged that they can never retain the immune system they had before. sort of the good and the bad of a successful treatment with heavy Chemo's. Of course if those people had tried Chlorambucil and Rituxan first and it didn't work, then of course they had no choice but to try the other heavier Chemo's. That may happen to you too later.

Meanwhile I think it only makes sense to try the milder treatments first becasue they cause your body less damage. Then if they don't work, at least you haven't burned up your body or your marrow. Some docs and researchers and patients say that if you use Rituxan and Chlorambucil first then the other drugs like RFC and Fludurabine by itself or FC or CHOP or Campath etc. will not workas well as if you hadn't had Rituxan and chlorambucil first. There may be some truth to that, however in most of the study's I've seen, all those heavier Chemo's did work just as well on patients that had had Rituxan and Chlorambucil first. So, it's really a matter of opinion. To me, it was much better to take the milder treatments first and thank God I did because now I am normal as far as blood counts go znd my body has healed completely after being so critically ill. I truly can't argue with my success. However I do know that eventually the CLL will come back to me and when it does I will do the same thing again. But it may nto work next time. Yet it might work again a second time. So I won't know till I try it. But, if it doesn't work and I get sick enough, then I will be forced to take some of the other heavier chemo's. But no way will I take them first. Just a matter of my own personal opinion. Each doctor you talk to will give you a different idea. There are hardly two doctors anywhere that treat alike. They most often use Fludurabine to start out, but from there it is spread out as they all use something different to mix with it. Everyone is trying to find the cure, but no one has one yet. Doctors are guessing just like everyone else. They usually use what they are used to using. Very few doctors keep up on the latest stuff or the latest study's. Also they usually don't want to use the old and mild medicines because there is no challenge to them that way. They always want to try new damgerous drugs just to see what will happen. In other words patients in my opinion are nothing more than guinea pigs. Remember after the doc tells you which meds to take, he gets to go home to his life. You have to live with it. Not him.

So, thats why I have decided to use the mild treatments first. Buy as much time as possible. Also, when in doubt do nothing. Too many docs treat heavily just because you have CLL in your body, regardless of how bad it is. That is a real mistake. I have seen patients that were not as sick as I was being given heavy meds just because they had a high WBC or CLL lymphs in the blood and then they got sicker and sicker and sicker........not from the CLL in my opinion, but from all the Chemo's they were being given. Any and all Chemo's are poisen! A bad medicine that you should only take when you have no other choice. So, if your not that sick then don't take anything. If you do get to the point where your getting swollen nodes and the white counts are getting big and your lymphs are getting large numbers and your not feeling well, Ok then in my opinion, you should take the Rituxan/Chlorambucil mixture. At least take the Rituxan by itself before anything else. Just my opinion.

Well, I have to get to work here, good luck, let me know how it goes. Kurt

Re: just diagnosed

Dear Kurt,I reviewed your answer to 'just diagnosed' and I m very interested in your own protocol. My oncologist say that when the time is ready and I'm guessing it will be sooner rather than later, that he would only us e that drug you used, chrolomucil (incorrect spelling, sorry) without rituxan. He feels that since I m 75 even though I have the markers for progressive CLL, 100%CD38, unmutated IVGH,, thoug low ZAP70. How does that sound to you? Thanksedie

[Guest guest]

and , Go to the following address to find a list of the Consortium facilities and doctors. http://cll.ucsd.edu/links.htm

Good Luck, Kurt

Ps. There are many good doctors out there that are familiar with CLL and in fact specialize in it, who are not members of the consortium. So if the consortium doctors are simply too far, best thing is to call around and find Oncologists who specialize in CLL and go see three or four of them for a consensus of opinions. K.

Re: just diagnosed

Hi - the CBC is indeed the best indicator, but if you have no faith in your present guy, you should have it done elsewhere, and interpreted by someone who is more on top of things. Get the CBC "with differential", that analyses your lymphocyte and neutrophil levels, which is important to know, tells you how clogged your blood is with the bad guys.

I don't know much about Nevada, but Dr. Kipps at the Univ. of Cal. in San Diego, can't be too far, is a top guy, cutting edge.

Good health!

Balan

[Guest guest]

Welcome Lynda - I hope many respond to your post --- and I hope you always

feel welcome to share....

There are many seasoned veterans on this list who are just amazing in the

time they take out to respond and help other new parents.

I hope you find this list to be a great resource.

Guppy

_____

From: Lynda_Hart [mailto:Lynda.Hart@...]

Sent: Tuesday, January 13, 2004 1:05 PM

'texas-autism-advocacy ';

'autism_in_children '

Subject: just diagnosed

[Guest guest]

Welcome Lynda - I hope many respond to your post --- and I hope you always

feel welcome to share....

There are many seasoned veterans on this list who are just amazing in the

time they take out to respond and help other new parents.

I hope you find this list to be a great resource.

Guppy

_____

From: Lynda_Hart [mailto:Lynda.Hart@...]

Sent: Tuesday, January 13, 2004 1:05 PM

'texas-autism-advocacy ';

'autism_in_children '

Subject: just diagnosed

[Guest guest]

Welcome to the group, Lynda! I also have a 12-year-old. You might also

check into the DallasAspergerNetwork group. While they tend to lean more

heavily towards folks with Asperger Syndrome, they also have many members with

HFA and PDD, and can be very helpful.

Gaylen

[Guest guest]

Welcome to the group, Lynda! I also have a 12-year-old. You might also

check into the DallasAspergerNetwork group. While they tend to lean more

heavily towards folks with Asperger Syndrome, they also have many members with

HFA and PDD, and can be very helpful.

Gaylen

[Guest guest]

Welcome to the group, Lynda! I also have a 12-year-old. You might also

check into the DallasAspergerNetwork group. While they tend to lean more

heavily towards folks with Asperger Syndrome, they also have many members with

HFA and PDD, and can be very helpful.

Gaylen

[Guest guest]

Lynda,

My heart goes out to you. I know pretty much how you feel. Our son

was finally diagnosed last year at age 5 w/ PDD in the Autism

Spectrum. We had previously been told they weren't sure whether it

was Autism or ADHD. We had hoped that it was ADHD, as it seems less

serious, and easier to treat, but were also glad to finally know what

it was so that we could start looking into the proper treatment

options.

The good news is that there is good reason to be hopeful that your

son will be exhibiting few of his current autistic behaviors by

adulthood. There are a lot of very helpful bio-chemical treatments,

and speech and occupational therapies available to that end. Though

you may be off to a late start, it's never too late, and your son's

diagnosis as high-functioning is encouraging.

This email group has proved to be an invaluable resource of

information and encouragement. I would also encourage you to go to

www.featnt.org and get their Introduction to Autism for new parents,

for starters

Also, you should buy some books on the subject. Search for " Autism "

at Amazon.com to find a slew of books on the subject and read reviews

from parents to gauge how useful the book may be for you. Then go

buy whatever you can find at Half-Priced Books that looks helpful, as

most of those are extremely cheap. One book in particular that I

highly recommend (and many others will vouch for this as well) is

Biological Treatments for Autism and PDD by Dr. Bernard Shaw. It's

not the easiest read in the world, but it's a great start towards

understanding some of the bio-chemical factors involved in Autism.

Blessed be,

> My 12 yr old son was just diagnosed with " high functioning

autism. " He is

> in the 7th grade and has previously been wrongly diagnosed as ADHD.

> However, further studies have determined that really doesn't " fit "

his

> symptoms (although the low dose Ritalin does help somewhat). I

would love

> the opportunity to visit with you and share resources, ideas,

thoughts, etc.

>

>

>

> I am trying very hard to have a positive outlook on this ...

although it is

> a struggle (as I'm sure you all well know). I do believe that now

that we

> finally know what is wrong, we can better know how to help him.

>

>

>

> Thank you for allowing me to join your group and to share ...

>

>

>

> ~Lynda

>

> Santa Fe, TX

>

>

>

>

>

>

>

>