Hello

September 21, 2001

Thanks,

--- Rosenbaum <mamacin@...> wrote:

> My Dr. says PA does not affect muscles and tendons,

> but, if it doesn't, many

> of us have other illnesses in combination with the

> PA. I also have the hand

> and finger and wrist problems. As a matter of fact,

> I was on Enbrel for 3

> months and the only relief I got was in my hands

> (Dr. said not enough to

> warrant staying on Enbrel, so I'm off). PA is a

> crazy illness and I really

> think the docs don't know everything about it yet.

> Frustrating; huh? By the

> way, as miserable as the liver biopsy is, you MUST

> have it. I can't believe

> your doc hasn't insisted on it. I'm going for my 2nd

> next month (on metho

> about 5 yrs.)

> Best of luck with the grasping!

> ----- Original Message -----

> From: " james maddison " <iglooman1000@...>

>

> > I was wondering can PA effect muscles? Tendons?

> > I have been going through wrist and hand pain that

> I

> > would consider disabling. Grip test and finger

> test

> > are low. They did a nerve test and proved not to

> be

> > carpal tunnel.

> >

> > Any suggestions?

> > Thanks

> >

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

> Moderator 2 cents: If the doc sez that PA doesn't

> attack the tendons he needs to be educated. PatB

>

__________________________________________________

September 28, 2001

Last year on our fishing trip, my brother told me I

couldn't even catch a cold! How wrong he was...

I'm not sure about the immune system. I haven't read

of any prolonged effect, I suppose the weaker we get

the more susceptible we are. So far I have attributed

the weakness I have experienced to the tx and not the

disease, it's so hard to tell, though. It seems the

symptoms are much the same. Hope you start feeling

better. -dz-

--- WTM4@... wrote:

> Hi my friends,

> It's been a few days since i posted an

> email, so i thought

> i'd better show up. lol How is everyone doing? I

> was lucky to catch

> another cold, this immune thing bites. I think i may

> start taking a bath

> in chicken soup!! lol It figures tho it's almost

> time for flu shots. I

> am starting to research cirrhosis to see if i can

> add any thing to my

> herbs to help. Last year i didn't see to catch colds

> as easily does it

> get worse with time? You all are the experts as far

> as i'm concerned.

> And you all are alot easier to understand tan the

> docs. So does the

> immune system get even weaker as time goes on? I

> still haven't heard

> when i start treatment all i know is sometime this

> fall. SJ i hope that

> you have a great time on the road, but, please take

> care of yourself. I

> hope that every one has a great day!

> Terri

>

__________________________________________________

September 28, 2001

Terri,

I hope you start feeling better.... Seems everyone is either having

sinus, allergy or cold symptoms.... I will be saying a special prayer

for you... Feel better sweetie....

Angel Hugs,

Diane

May Rainbow Dreams Color Your World With Love, Hope, Peace & Unity

November 26, 2001

Hi, for hypothyroidism I use Armour, which is a thyroid glandular extract. I'm not sure what Dr. D. recommends but I think Shomon has info on this on her about.com thyroid site.

January 3, 2002

Hi Jonna,

Welcome to the group. You might want to visit my web site, http://daisyelaine_co.tripod.com/gravesdisease/ and also www.ithyroid.com. The people here also have a wealth of information if you have any specific questions. Take care, Elaine

January 3, 2002

HI Elaine, Thank's so much! I looking forward to coming here and

learning all I can and meeting people too. You take care too!

Jonna

January 6, 2002

Dear Tori's Mom,

Was just reading your post and while my Kate doesn't have systemic

(severe poly) she does have hip problems. Was curious if the doctor

checked Tori for avascular necrosis of the hip? The symptoms you

describe sound similiar to Kate's when she was diagnosed with it. I hope

it's not--but was wondering. Hope Tori gets to feeling and doing better

soon!

and Kate--7 severe poly and AVN

January 6, 2002

Hi Tori's Mom : )

It's nice to hear from you. We used to hear that should regain more regular growth once his arthritis went into remission and/or he was able to get off the steroids, too. It's been a lot of years but I'm still staying hopeful. Josh is currently taking: prednisone, methotrexate, indomethacin, miacalcin, hydroxychloroquine, folic acid, cytotec, and calcium supplements. Ferritin has been on and off. That sure does sound like a lot, doesn't it? At this point his arthritis seems controlled pretty well but he's been taking those very same meds for a very long time and his arthritis symptoms weren't always as well controlled. Far from it. So, I'm not so sure what exactly is making the difference right now. I noticed major improvements when Josh switched from oral to injectable Methotrexate, though.

I hope Tori will have an easier time of it soon. And do keep in touch.

Aloha,

Georgina

Hi! I found this site last night and found it very helpful. My daughter had the onset of systemic jra 1 month before her 3rd bday. There hasn't been any arthritic problems genetically, so this came as quite a surprise. As time has gone on, instead of getting better, she has gotten worse. Every time we add a new drug. (What is the most number of medicines recorded on kids @ a time I sometimes wonder???) Tori is on prednisone, methotrexate, enbrel and ibuprophen. Any how, Tori's wrists, hips, knees, & ankles are affected on both sides. Luckily she is in good spirits about it for everyone else but mom & dad. (As with all kids mom & dad always get the worst because of our unconditional love!) Her right hip has gotten very stiff and all the hot baths, physical therapy, fun play, magnets, (friendly miralce cure vitamins given to us by loved ones) haven't been helping. Luckily she can still walk, although very slow and with an exaggerated limp. This limp has been with her for 4 months. She can hardly walk around the block, but gives it a good try knowing its good for her. Tori is now 6 1/2 and in first grade and I wonder if the lack of exercise for being in school all day sitting at a desk contributes ot the problem. It's probably just coincidental timing.I saw some mention of height concerns mentioned in some of the postings. Tori is 39 inches and has grown 1 1/2 inches since the onset 3 1/2 years ago. She is the same size as her 3 1/2 year old brother and he's starting to pass her. Our ped. rheumy says not to worry, that when she goes into remission & is off the prednisone she'll grow faster than normal. Does anyone out there know about this? My question is what if she doesn't go into remission??? I doubt she'll even make 4 feet.Any way.... I know I have been long winded and appreciate those of you who have read this whole note. I enjoy this site and will be back!!!Tori's mom, systemic 3 1/2 years

February 28, 2002

Dead_Heart.... Take heart, there are good

treatment regimens for hypogonadism. The most

important thing now is to determine if your hypogonadism is

primary (nuts not producing testosterone) or secondary

(messages not being sent from brain to nuts to produce

testosterone). The treatment options are very different. In the

links section here there are a couple of links on

primary vs. secondary. I did a Google search and

here is opening page with alot of links to

articles... <a

href=http://google.com/search?hl=en & q=%2Bhypogonadism+%2Bprimary+%2Bsecondary+%2\

B2001 & btnG=Google+Search

target=new>http://google.com/search?hl=en & q=%2Bhypogonadism+%2Bprimary+%2Bsecond\

ary+%2B2001

& btnG=Google+Search</a> This is what I entered for web

search.... +hypogonadism +primary +secondary +2001. You'll do ok!

Be thankful that you have caught it now....Keep us

posted as to goes it how...we're here for

you. Endocrinologist will probably want to run some hormone tests on

you....when results come back...ask for a copy and begin to

keep your lab records. You can post your results back

here if you want for comment from guys that have some

knowledge about hypogonadism. Good Luck, OR

eon

February 28, 2002

thank you u are the first pll i talked to

besides my doctor who wasnt realy any help my

appointment with the doctor is in april so until then i

will be freeking the f*^ & out and tearing out my hair

is it possible the i am just a REAlly late blummer

and that any day it will just hit me im a big

guy, 6'4 " 300lb im alwas active i play all

kinds of sports i train every day and eat right and

i still cant lose weight i thought i was having

problems cus i had the metabolism of a prepubesant person

thats when i was fed up of hidding and talked to my

doctor thanx for any help or info u can give me

*tring to smile* dead heart

February 28, 2002

dead_heart90210 As you've probably figured

out, hypogonadism means that one's body produces fewer

hormones than it needs. There is no need to freak

out. You know what you are going to do. You are

going to the hospital to see an endocrinologist. The

doc will look at your blood work or draw more blood

for tests designed to determine whether or not you

are hypogonadal. If you are hypogonadal, there will

be further tests to determine where the problem

lies. For most of us the problem is in the testicles or

in the head (hypothalmus/pituitary). Diagnostic

testing is available to help determine which of the

various possibilities applies to you. Once you

know where you problem lies, you will learn about

possible treatments and choose one to try. You'll evaluate

the result with blood work, how you feel, and bodily

changes. You may need to try different doses or different

treatments before you find what works best for you. You may

also have your bone density evaluated. You may choose

to bank some sperm now for future use. Most

of us are not " cured " in the sense that on-going

treatments will usually be required for life. You can be

" cured " in the sense of getting rid of all the symptoms

or problems created by hypogonadism provided you

continue your treatment. You don't know whether or

not you are hypogonadal yet and you don't have enough

information to predict whether you can be cured or will need

on-going treatment. Testosterone, if that winds up

being your treatment, doesn't fix " everything " but it

can fix the symptoms of testosterone

deficiency. While you are waiting for your endo appointment, look

at the pdf

at: <a href=http://www.aace.com/clin/guidelines/hypogonadism.pdf

target=new>http://www.aace.com/clin/guidelines/hypogonadism.pdf</a> It

may info overload, but it will give you some

ideas about what to expect. Take care, Brad

February 28, 2002

Dead- Brad's advice is really on target.

The AACE is the best overview in detail I know. The

androgel. com site is good for it's simplicity and

usefulness. You want that first appointment to be as productive

as possible, so I would suggest

reading everything you can about hypogonadism so that you can: 1)

ask the right questions to the doctor and push for

the right tests and treatment, and 2) assess

whether this doctor knows much, cares much, or is worth

spending much time with...not to mention

money. Mnay of us have had to try several doctors before

finding someone we could work with. Keep in mind this

doctor is working for you, and should accord you respect

and have knowledge. Also, keep in mend that

hypogonadism is no way a reflection of being less of a

male, in any way. This does involve emotionally

loaded stuff that pertains to our concepts of

masculinity...so don't be hard on yourself for feeling

worried or upset..it's pretty natural. It's important

that you're finally getting it looked into, rather

than go on for more years feeling like something's

really wrong. Best regards, Grandslam

March 1, 2002

Dead Heart, Hold on a little longer!

You've made the first important step by seeking out

groups like this. Any possibility that you can

get your endo's appt moved up sooner? Read as

much as you can...some of it you may have to read

several times to digest/comprehend...this is where we all

started. This way you can be a participant in your own

health care. IT WILL get better... OR eon

March 1, 2002

thanx again for everyones help just reading

what u guys have to say calmed me down alot my

doctor said he thinks its a problem with the pituitary

glan Brad u said i should bank sperm, how

come? theres a problem there, i cant produce

sperm. someone also said i might need to get a bone density

test, how come? and how do u do this test? I dont

think i have a problem there, im big boned and never

broke anything before. i also read that its

possible that i may be infertile!!! if its not to much

to ask, are any of u guys infertile? if its a

problem with the pituitary glan is there more of a chance

that i will not be infertile. sorry if im

asking alot of questions, u guys are the only ppl i can

ask, even with my doctor iv been with all my life i

feel uncomfertabal asking question and he can realy

answer them anyway. thanx again everyone dead

heart

March 1, 2002

Hi deadheart- Glad to see you're feeling

better. I'm likely the one who recommended the bone density

scan. I'm no scientist, but apparently testosterone

protects bone density, and low T is associated with

osteopenia and osteoporosis. This seems to parallel the

role of estrogen in women and the post-menopausal

problem with osteoporosis. My first hometown endo

didn't even send me for a bone scan, the second was

into osteoporosis so he did, luckily, though he knew

nothing about low T. It revealed osteopenia, which is

a less severe reduction in bone density. They

use standard deviations to set the diagnostic

limits...I think there are age-related norms. The

scan is totally painless, and takes lttle

time. It's basically like a very open MRI and they did scans

of lower back and hip. The osteopenia was more

pronounced in the lower back. The technician actually showed

me the problem right on the color printout of the

test, on the spot. With a diagnosis of

hypogonadism, the insurance company should pay for the

scan. Treatment- the endo who ordered it prescibed weight bearing

exercise- 30 min. treadmill 6x wk. The major league endo

I saw felt that the testosterone replacement should

help it and also prescribed Calcium and Vitamin

D. You're pretty young, so maybe you're less likely to have

this problem, but every hypogonadal guy should get the

test- to arrest this as much as possible, and prevent

problems like fractures that can be prevented. If

your doctor resists ordering this test, or

just doesn't know that low T can involve bone density

problems- ditch him. Best regards, Grandslam

March 10, 2002

Randy..

Nice to hear from you again...

Is the only med you are taking Pred?

You said that your labs were higher...what were they before and what are they now....

I am guessing that it is a nice day in Arizona since you are going to the park with you son....Here in NJ it is cold and very windy...very....all the flags are flying straight out...constantly...yesterday it was really warm...sat out on the deck and just relaxed...well that is after I piled a cord of wood that had been delivered earlier....so I deserved the rest....

Let us know more about yourself and family...How long have you been treated for AIH...

Hope to talk to you soon...

Luanne Ty's mom

Just in case you don't know me....I am one of the moms on here....my son is now 19 was orginally diagnosed when he was 9...he also has other auto-immune diseases....

March 10, 2002

I know i only sent in a couple of emails but my name Is Randy Summitt Live in Arizona. Got results of my Blood work the other day. The levels are higher then before. I was only taking 20 mgs of Pred. a day. The Doc. put it up to 40 mgs now to see if that would help. And that email of Coke or Water lol I work for the Coca-Cola company so I should now about it. Well I am off to the park with my son for the day its a nice day out side and I hopw you all have a nice day as well and chatt with you all later. Randy Summitt

flatcat9@... wrote: In a message dated 3/10/02 2:34:43 AM Pacific Standard Time, writes:

Hi everyone! I am looking for somebody to swap emails and info about AIH. I´m a 9-year-old-boy´s mother.We found out he´s got AIH when he was 5.We live in the northeast part of the country and his doc the only one here who can see him lives down south which takes more than 3 hours by plane if we want her to see him.He was biopsied in the early stage of the disease to be sure it was an AIH.Actually he´s been having an associated therapy with prednisone(alternative days) and daily azathioprine. The doc will see him still this year.She hopes that after a second biopsy he might be ready for a remission. I would like to contact people who have had this experience and as it´s a rare disease in my country, emails for patients and families around the world will be always welcome. Please, don´t let us alone in this battle. Sincerely, Ana PaivaAna, are you in Norway? You didn't mention which country you are in the northeast of. Do you have access to reference books on liver disease? Two good, simple ones are published in the United States. They are available through amazon.com at very modest prices. Let me know if you want more information on them. (One is by Dr. Palmer and the other is by Dr. G. Worman.) Harper

March 19, 2002

You are lucky they have found it so young! I was

25 when they told me I had kleinfelter's

syndrom. I went for shots for about a year, Then to

pills. Don't do any pills!! They store up in your liver and

that's how you get liver cancer. Anyway, Their is

help! Just read all you can! Don't let other people

lead you down the road of old wives tales. When I

found out I had it, I was told by my endo doc that 1 in

500 boy's are born with it. Good luck

March 29, 2002

HI,

Just want to know if you know of anyone with lupus who has developed autoimmune liver cirrohis or any other liver problems? My GI is starting to scare me wanting to do so many tests. Blood tests galore,mrcp(mri), endoscopy, maybe a liver biopsy.

What do you think?

Thanks, Frances

March 29, 2002

Hi Frances,

I've had lupus since '98, AIH since '00. The only " tests " I had done

for the AIH were labs (blood) and a biopsy. The biopsy was a piece of

cake for me. A biopsy is needed to confirm and to find out how much

damage has been done. Best of luck to you, and do't let them scare

you! Laurie

> HI,

> Just want to know if you know of anyone with lupus who has

developed

> autoimmune liver cirrohis or any other liver problems? My GI is

starting to

> scare me wanting to do so many tests. Blood tests galore,mrcp(mri),

> endoscopy, maybe a liver biopsy.

> What do you think?

> Thanks,

> Frances

April 24, 2002

Welcome to the group. My name is Terry. I live in southwestern Az just outside of Phoenix

Terry

gandcwaltke <gandcwaltke@...> wrote: Hello, I am Fluffy's DIL. Just wanted to introduce myself.

April 24, 2002

Now will you go and look what I have done. My DIL is on the group now I gots to behave myself for sure. HA! Long time in coming and I told her to ask any questions they might have. Told her you were a great bunch of people ... Fluffy Re: [ ] Hello Welcome to the group. My name is Terry. I live in southwestern Az just outside of Phoenix Terry gandcwaltke <gandcwaltke@...> wrote: Hello, I am Fluffy's DIL. Just wanted to introduce myself.

April 24, 2002

Hi gand..Welcome..Join in when you want too....Nice to meet ya...

April 24, 2002

Hi and welcome to the group.

[ ] Hello

> Hello,

>

> I am Fluffy's DIL. Just wanted to introduce myself.

>

April 24, 2002

Welcome Fluffy's DIL. I had to think about that for a while, but I'm guessing it's short for daughter-in-law? Anyway, my name is Dave, I'm from Green Bay, WI. I found out I had hcv a couple of years ago. I completed the treatment last December and am currently undetectable. I'll go back in July to see if the devil has returned. If you like to just 'listen' for a while and chime in when you're ready, please do. We look forward to hearing more from you. -dz-

gandcwaltke <gandcwaltke@...> wrote: Hello, I am Fluffy's DIL. Just wanted to introduce myself.

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