Hello

[Guest guest]

Hi ,

Welcome to the group and I hope this group can help you...sometimes just reading

other's messages can be helpful-I do alot of reading. Sorry about your pain.

I've had P for about 30+ years and diagnosed with PA for about 3 years (although

I've had it for about 20+). I have carpel tunnel syndrome with my PA in my

hands so most of the time I can't write much.

God Bless, Sue-Susieesue.

Lawson <smglawson@...> wrote:

Hi there, I am a 51 year old female, who has given

birth to only one child. Basically have been in good

health over the years. Have come off a 6 year stint

caring for aging parents to the point of exhaustion,

and this is when I believe my PA starting kicking in

for good. I understand it is an autioimmune disorder.

I had an aunt who had " just arthritis " that began at

40, and was in her spine, hips and hands. She is

deceased now, but I believe she probably had PA, too.

Just found this group tonight, didn't know one was out

there for people with Psoriatic Arthritis. I was

searching the web as I have had a right-ear reversable

hearing loss develop from taking Voltaren, and

recently took regular aspirin only two twice a day for

about 10 days, and now my right ear is stuffy and

ringing 3 weeks after stopping aspirin. I am going to

an ENT MD and back to the Rheum. next week if I can

get in. I was diagnosed with PA about 2 years ago, and

have remained fairly untouched by the disease until

recently. I originally sought out a Rheumatologist

because I was having bilateral join aches that my MD

couldn't explain after running sed tests for RA. I

finally took myself to the Rheum. and he did the blood

work that says I am positive for B-27 gene.

I only had a eraser-sized case of Psorasis on my scalp

about 25 years ago, that was treated with some really

stinging medicine, and has never returned. I did have

ecezema on my fingers/toes and finger/toenails as a

child though, that did clear up over time. Currently,

my right index finger is twisting and the DIP joint is

deforming. My left index finger is beginning to twist,

and the DIP joint is aching. The DIP joint of my right

little finger is enlarged. My lower back aches on

occasion, but I attributed it to injurying it after

attempting to lift my invalid father. But it is fairly

constant now, though I seem to get some relief from

going to the Chiropractor, though I wonder if I am

doing damage. The Rheum says no-go ahead if it works.

My feet have hurt like crazy in the past, but so far

are OK. My hips ache the most, especially after going

up and down stairs at home. I had random red swollen

joints at about 10 years old, that the doctors said

was Juv. RA that I would outgrow. I thought I did as I

went a long time without that happening again, but now

in retrospect, I have had random events with joints,

though mild off and on over the years, that I thought

were due to other things, like overexertion, etc. The

Rheum. says in fact, as a child, the mis-diagnosed JRA

was in fact, PA and I have had mild flares and

remissions and didn't know what it was due to. Now

that joints are deforming, I am scared about the drugs

and wonder if this will continue to progress. I am

currently on nothing. The Rheum. just gave me Voltaren

to use as needed, but it rings my ears. I am glad to

find this group, as I look forward to hearing how

others are coping with this disorder. Thanks for

letting me share.

[Guest guest]

Hi Leanne,

I'm very sorry to hear about your sickness.

Could you tell us a little more about your hyperthyroidism, such as what

treatments are

you currently doing, what treatments have you done, what were and are your

symptoms,

what were and are your blood test results, how do you feel right now, etc. These

would

help members here understand and relate to your condition better.

I think that understanding your situation may help others with similaries to

deal with their

own situation. If you haven't done the RAI, I think you have a much better

chance of

recovery due to your age.

Take care.

joey

> Hi everyone my name is leanne and I am 22 years old. Not long after

> turning 21 I found out the hard way that I have hyperthyriodism.

> Needless to say this has been a very difficult time for me and has

> many different problems. Now I am possibly facing blindness. Is there

> anyone in this group who is my age or has had similar problems

> if so I would love to hear about your battle with this insane

> diease.Thanks Leanne

[Guest guest]

In a message dated 6/26/05 12:48:14 PM GMT Daylight Time,

smglawson@... writes:

Hi there, I am a 51 year old female, who has given

birth to only one child. Basically have been in good

health over the years.

Hi ,

Welcome (A very belated one) to the group. I'm glad you stumbled across us

but i'm sorry circumstances brought you here. You should be able to get any

info and advice you require from the group as there are a lot of knowledgeable

and " experienced " people here.

I hope you can get some help to slow down the advance of this disease.

Good luck,

[Guest guest]

I do feel better on the Armour then on anything else. I have been on

the Synthroid too and felt worse with it. Only being on the Armour has

been the only way I have been able to function better unless I would be

bed bound anf feeling horrible all the time instead of only some ot the

time. I live in North Carolina and see and ENDO in Ralight. Would

love to be able to talk to you more one on one. Send me your e0-mail

and phone number if you do not mind.

Thanks

Theresa

---> My name is . I agree about the armour thyroid. I found out

> in '93 that I had low thyroid. I came about after a year or two from

> having my daughter. I tried the synthorid first cause the doctors

only

> prescribed this.

[Guest guest]

On Aug 3, 2005, at 10:07 PM, wrote:

>

> I have had HIV for 26 years, been on HAART for two

> years and have had multiple spontaneous fractures and

> a DEXA indicating osteoporosis. I will be seeing my

> doctor later in August to review treatment opens

> including testosterone replacement. I would

> appreciate input from other men going through this. I

> have no idea what to expect from replacement therapy

> and which method and dose seems most beneficial.

> Thanks.

>

> Johann

Johann,

The best place for this questions and many others in your situation is

, another (excellent) group. Meawhile, I will give you a

brief answer because I have experience with this issue. What turned my

bone density around was T supplementation (doesn't matter how you take

it so long as you're getting your levels up to the top 1/3 of the

range, at least), 2000-3000 mg of calcium per day (with meals), 800 IU

or more of vit D, and 400-500 mg magnesium, taken separately at night

before bed. In addition, I have also been fortunate to get low-dose

(read: replacement level only) HGH (Lilly's Humatrope), .7 mg per day

(that's point-seven mg). Endocrinologists can prescribe this (and some

regular docs if they are on Lilly's approved list), but insurance

reimbursement can be difficult. It's definitely worth checking on,

because it is enormously beneficial to restoring bone integrity. A

doctor would do a GH test to determine if you have adult GH deficiency

and the prescribing would be based on that test. Finally, do you

exercise? If you are able to, then you should it challenges the bone to

grow. I walk a lot and do resistance training under supervision of a PT

because I also have a lower back injury.

in SF

[Guest guest]

On Thu, 4 Aug 2005 10:06:54 -0700, you wrote:

>

>On Aug 3, 2005, at 10:07 PM, wrote:

>

>>

>> I have had HIV for 26 years, been on HAART for two

>> years and have had multiple spontaneous fractures and

>> a DEXA indicating osteoporosis. I will be seeing my

>> doctor later in August to review treatment opens

>> including testosterone replacement. I would

>> appreciate input from other men going through this. I

>> have no idea what to expect from replacement therapy

>> and which method and dose seems most beneficial.

>> Thanks.

>>

>> Johann

>

>Johann,

>

>The best place for this questions and many others in your situation is

>, another (excellent) group. Meawhile, I will give you a

>brief answer because I have experience with this issue. What turned my

>bone density around was T supplementation (doesn't matter how you take

>it so long as you're getting your levels up to the top 1/3 of the

>range, at least), 2000-3000 mg of calcium per day (with meals), 800 IU

>or more of vit D, and 400-500 mg magnesium, taken separately at night

>before bed. In addition, I have also been fortunate to get low-dose

>(read: replacement level only) HGH (Lilly's Humatrope), .7 mg per day

>(that's point-seven mg).

If you're getting TRT and eating properly you shouldn't need a lot of

meds too.

I got my bone density back up in two years taking TRT, Vitamin D and

eating a lot of calcium. (D is essential for calcium uptake) I do a

" milkshake " with fat free yogurt, skim milk, and toasted oatmeal with

a tablespoon of olive oil. (TRT can play havoc with lipid chemistry so

I go fat free dairy and olive oil and oatmeal all aimed at lipid

issues.). Flavor with whatever you want. Blueberries, chocolate are my

favorites.

With this I take a couple Tums every night at bedtime.

- - - -

Just another albino black sheep

[Guest guest]

Hello and welcome, Loretta. Although I started out hyper, I am now hypo and do

sympathize with you. It's not easy. I think if I had a choice, I would be

hyper. But maybe that is just a case of the grass being greener on the other

side of the fence. Weight is not easy to lose. I'm not sure it is possible to

lose much weight. I have gained weight while hyper and while hypo. I find that

I can maintain my weight if I remember to always drink water and eat a lot of

fruit and vegetables. But then the cravings start...

Are you on thyroid replacement hormone? Are your labs all at the best spot?

Have you had Free T3 and Free T4 tested recently? I've read that these are

important of the blood tests, as well as TSH. At the moment I am trying to

bring my Free T3 up to above the mid point of the range. As it moves up, I'm

losing the water I was retaining in my legs and this is satisfying. But it is

hard to find just the right dosage, especially as Cytomel (synthetic T3) is no

longer being shipped here to Canada in the dosage I was taking.

Have you seen your doctor about your blood pressure? What does your doctor say

to do?

Kate

Hello

Hello,

My name is Loretta age 41 and I have had hypo going on 2 years...I am

still packing on the weight. Along with the hypo, I have high blood

pressure. Today has been rough....just feel out of sorts. Since my

weight has been out of control, I have decided to start a TOPS group

in Vinton. I need support so bad.....my weight is just bringing me

down. I want to be with others that have the same issues as myself and

understand what I am talking about. I enjoy lurking in this

group... really does a good job in keeping us all informed.

Take care,

[Guest guest]

Thanks Tony, I needed your faith and example. I pray that your strength keeps up and you can enjoy the time with your mom. Clara From OR

RE: [ ] Hello

Dear :First of all; welcome to our group; you have made the first step in not only finding advise and encouragement from other with similar situations but an inmense amount of love and support from everyone. my name is Tony and I don't share your same illnesses but I've been facing what my doctors have classified from the beginning a terminal illness.

[Guest guest]

, are you doing OK???

Debby

[ ] Hello

As some of you know I have been having a problem getting my

meds because I lost my insurance.

Last night I had to go to the ER because I was unable to urinate and they took

almost 2000cc out with a catheter. I am going to a doc today because they thing

something is going on but not sure what.

While I was there they did my liver panels and everything is up Liver enzymes

in the 400 range and I will get to go back to that lovely joke of a doctor of

mine so he can tell me what to do.

I haven't been feeling well so only get on here sometimes.

Hope everyone is doing good.

Tony so glad you are with your mom.

[Guest guest]

Welcome Marty. This group isn't as active as it was,

but I'm sure everyone is still here supporting each

other.

Sharon

--- e <marticos2002@...> wrote:

> Hi everyone: I am a female, 52 years old, living in

> Florida, and have

> had HepC since probably the 1970s. I did treatment

> once and am about

> to start again. I am fairly knowledgeable about this

> disease because

> as soon as I found out I had it (1997) I started to

> study it. I never

> had any symptoms until around 2000, and did

> treatment from 2001 -

> 2002, but did not clear the virus.

> I belong to a few other HepC groups and have

> learned a lot from

> all the people who suffer from it, and also, gained

> lots of support

> from those who have gone through treatment and also

> from those who

> choose not to do the traditional method of

> treatment.

> Marty

>

>

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Thanks for the welcome, Sharon. I belong to a few other HepC groups and none of them have been very active lately either. A few years ago, I'd get about twenty new emails a day from the groups, now I get around five or sometimes ten. One of the groups has whittled down to just a few active members and a lot of lurkers.

I've made some really good friends with some of the group members, and when I was on treatment, the groups helped me stay sane. Also, once people clear the virus they tend to stop posting in the groups, which is a shame, but understandable. They don't need any support people any longer.

Marty

Start your day with - make it your home page

[Guest guest]

I know what you mean although this group has been well

known for being there a lot. It's been 3 years since I

finished treatment.(Successfully thank goodness) and

the agony starts fading but if anyone needs a shoulder

out there, I'll try to be here.

Sharon

--- Marty <marticos2002@...> wrote:

> Thanks for the welcome, Sharon. I belong to a few

> other HepC groups and none of them have been very

> active lately either. A few years ago, I'd get about

> twenty new emails a day from the groups, now I get

> around five or sometimes ten. One of the groups has

> whittled down to just a few active members and a lot

> of lurkers.

> I've made some really good friends with some of the

> group members, and when I was on treatment, the

> groups helped me stay sane. Also, once people clear

> the virus they tend to stop posting in the groups,

> which is a shame, but understandable. They don't

> need any support people any longer.

> Marty

>

>

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

> Start your day with - make it your home page

__________________________________

Stay connected, organized, and protected. Take the tour:

http://tour.mail./mailtour.html

[Guest guest]

hi everyone..i am doing poorly..always in pain..i used to have some hope.now not so much.couldn;t tolerate TX..god bless everyone here and i hope all are doing better then i

[Guest guest]

Sharon - it's rare that anyone who successfully completes treatment stays in a support group, and I really wish they would because they can inspire people who are starting it, or who are "on the fence" about it.

I'm about to start my second time in treatment - I did Rebetron before, it improved my liver health but I did not clear the virus. I've felt a lot better since I did it. I know I am probably progressed into "compensated cirrhosis" and am looking forward to doing Pegasys/Copeg - that's what the doctor here in Florida is going to treat me with. In California, when I first did it, they had Peg-intron but my HMO doctor said they didn't give long-acting interferons to people like me who have consistently low platelets.

The doctor out here says they don't really pay too much attention to platelet levels anymore with people in treatment.

Anyway - congrats about attaining SVR and kudos for staying in a support group.

Marty

__________________________________________________

[Guest guest]

It's important for people to see a success and you

never know when the dragon could ressurrect itself and

I need the support of these guys again

Sharon

--- Marty <marticos2002@...> wrote:

> Sharon - it's rare that anyone who successfully

> completes treatment stays in a support group, and I

> really wish they would because they can inspire

> people who are starting it, or who are " on the

> fence " about it.

> I'm about to start my second time in treatment - I

> did Rebetron before, it improved my liver health but

> I did not clear the virus. I've felt a lot better

> since I did it. I know I am probably progressed into

> " compensated cirrhosis " and am looking forward to

> doing Pegasys/Copeg - that's what the doctor here in

> Florida is going to treat me with. In California,

> when I first did it, they had Peg-intron but my HMO

> doctor said they didn't give long-acting interferons

> to people like me who have consistently low

> platelets.

> The doctor out here says they don't really pay too

> much attention to platelet levels anymore with

> people in treatment.

> Anyway - congrats about attaining SVR and kudos for

> staying in a support group.

> Marty

>

>

> __________________________________________________

>

[Guest guest]

Sorry to hear this. Know that my thoughts are with

you.

Sharon

--- sielick817@... wrote:

> hi everyone..i am doing poorly..always in pain..i

> used to have some hope.now

> not so much.couldn;t tolerate TX..god bless everyone

> here and i hope all are

> doing better then i

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

In a message dated 8/29/2005 10:05:05 AM Pacific Daylight Time, marticos2002@... writes:

I had been on before and within a week I was feeling a lot better.

Depression can cause body pains - it's been documented.

Hope you can get some help.

Marty

thanks so much.yes i think it;s soo true..i am in a very high stress zone right now..have tried the antidepressants..not tolerated well...

[Guest guest]

Lots of people have trouble tolerating treatment. I know one woman who quit after two weeks.

You should see a pain specialist - nobody should have to tolerate chronic pain. There is someone who will be compassionate enough to get you the medications you should have to function better.

I, too, am sorry you are not doing well.

All I can say is - try to get some medical help. It does make a difference. I sat around depressed for three months recently then went to the gastro doc who is going to treat me for hep, and asked for antidepressants. He prescribed the ones I had been on before and within a week I was feeling a lot better.

Depression can cause body pains - it's been documented.

Hope you can get some help.

Marty __________________________________________________

[Guest guest]

Try a different antidepressant. There are a zillion of them. Find the one that works for you. I tried three before I found one that didn't make my head spin and keep me up all night.

You may need a pain specialist. You should not live with chronic pain. It's barbaric for doctors not to treat people with narcotic analgesics if they are truly in pain.

Marty__________________________________________________

[Guest guest]

hello everyone,

i need some help here. i need to buy a new bed that will help me to sleep

better with all these issues (spondy, stenosis - level 3/4 and avn of knees

and hips and a bad neck i haven't begun to explore yet) has anyone got any

suggestions. like should the bed be box springs? should the bed be very soft?

should the bed be very hard? is there a certain bed that is better for bad

back people. appreciate any feedback you all can give me. thanks, marsha

[Guest guest]

I suspect the moderators have been upset recently by

porno people accessing the site...and they come in

with a heavy hand...sorry for the dispassionate

messages you may have encountered. Hang in there and

keep posting. You are obviously back in the

forum...just have to move on within this group....good

people here....

--- Climer <climers4@...> wrote:

> earlier today I sent a message to the groups I am in

> about being in so much

> pain and being depressed. One of the groups

> responded back rather nastily

> (it was the owner) basically stating I was having a

> pity party, and there

> were other people out there with more severe pain

> than mine, and they were

> not crying about it. This upset me terribly! I did

> reply to her, but I do

> not think I said or did anything nasty to her.

> Anyway it ended with me

> leaving the group voluntarily. Then she sent me a

> letter banning me. Now on

> all my groups it says I need approval from the owner

> for me to post to the

> group. I am very very upset about this. I have kept

> every corrispondance

> between the two of us just to verify I did nothing

> wrong.

>

>

>

> I just want things back to normal. I don't know if

> all the group owners has

> to fix this for me to post, or what. Could you

> please help me out?

>

> I love being in all the groups and the people are

> wonderful.

>

>

>

> Please help

>

> Climer

>

>

> [Non-text portions of this message have been

> removed]

>

>

This message may be coming from a foreign address. If it isn't coming from

, better not click on reply. My address is johnblaisdell@...

Blaisdell

Box 310

Kearny, Az. 85237

5203637491

______________________________________________________

Click here to donate to the Hurricane Katrina relief effort.

http://store./redcross-donate3/

[Guest guest]

Hi, Marsha After sleeping in a recliner for several years, I finally got an

adjustable bed, made by Natura (www.naturaworld.com) I am now back in bed with

dh, who also has sleep problems because of a hiatal hernia and foot surgeries.

We feel like we died and went to heaven. I get up rested and not stiff. I am

not advertising for them, just giving you my honest testimonial. I know what

difficulty it can be to find a comfortable bed. I have also found a folding

lounge chair that I can take with me when we travel since I just cannot sleep in

any regular bed. If anyone is interested, I can send info on that, too. Hope

this helps. Flo

[Guest guest]

Thank you Diane. Its nice having a place that supports you in good and bad.

Love to all you guys!!

-- Re: hello

,

I am so sorry that you were met with such a lack of compassion- of course

you were completely appropriate for sharing your feelings- how do we know

how to support one another if we don't share our current feelings and

situations- I hope that we can all bring you some comfort. I know first

hand what it is like when the pain starts to win and you spiral into

depression... it does get better- and I hope you have good medical care- for

me, having a family Dr who I have a good relationship with and with whom I

can share how I am truly feeling has made all the difference in the world.

Diane

Re: hello

I suspect the moderators have been upset recently by

porno people accessing the site...and they come in

with a heavy hand...sorry for the dispassionate

messages you may have encountered. Hang in there and

keep posting. You are obviously back in the

forum...just have to move on within this group....good

people here....

--- Climer <climers4@...> wrote:

> earlier today I sent a message to the groups I am in

> about being in so much

> pain and being depressed. One of the groups

> responded back rather nastily

> (it was the owner) basically stating I was having a

> pity party, and there

> were other people out there with more severe pain

> than mine, and they were

> not crying about it. This upset me terribly! I did

> reply to her, but I do

> not think I said or did anything nasty to her.

> Anyway it ended with me

> leaving the group voluntarily. Then she sent me a

> letter banning me. Now on

> all my groups it says I need approval from the owner

> for me to post to the

> group. I am very very upset about this. I have kept

> every corrispondance

> between the two of us just to verify I did nothing

> wrong.

>

>

>

> I just want things back to normal. I don't know if

> all the group owners has

> to fix this for me to post, or what. Could you

> please help me out?

>

> I love being in all the groups and the people are

> wonderful.

>

>

>

> Please help

>

> Climer

>

>

> [Non-text portions of this message have been

> removed]

>

>

This message may be coming from a foreign address. If it isn't coming from

, better not click on reply. My address is johnblaisdell@...

Blaisdell

Box 310

Kearny, Az. 85237

5203637491

______________________________________________________

Click here to donate to the Hurricane Katrina relief effort.

http://store./redcross-donate3/

[Guest guest]

,

I am so sorry that you were met with such a lack of compassion- of course you

were completely appropriate for sharing your feelings- how do we know how to

support one another if we don't share our current feelings and situations- I

hope that we can all bring you some comfort. I know first hand what it is like

when the pain starts to win and you spiral into depression... it does get

better- and I hope you have good medical care- for me, having a family Dr who I

have a good relationship with and with whom I can share how I am truly feeling

has made all the difference in the world.

Diane

Re: hello

I suspect the moderators have been upset recently by

porno people accessing the site...and they come in

with a heavy hand...sorry for the dispassionate

messages you may have encountered. Hang in there and

keep posting. You are obviously back in the

forum...just have to move on within this group....good

people here....

--- Climer <climers4@...> wrote:

> earlier today I sent a message to the groups I am in

> about being in so much

> pain and being depressed. One of the groups

> responded back rather nastily

> (it was the owner) basically stating I was having a

> pity party, and there

> were other people out there with more severe pain

> than mine, and they were

> not crying about it. This upset me terribly! I did

> reply to her, but I do

> not think I said or did anything nasty to her.

> Anyway it ended with me

> leaving the group voluntarily. Then she sent me a

> letter banning me. Now on

> all my groups it says I need approval from the owner

> for me to post to the

> group. I am very very upset about this. I have kept

> every corrispondance

> between the two of us just to verify I did nothing

> wrong.

>

>

>

> I just want things back to normal. I don't know if

> all the group owners has

> to fix this for me to post, or what. Could you

> please help me out?

>

> I love being in all the groups and the people are

> wonderful.

>

>

>

> Please help

>

> Climer

>

>

> [Non-text portions of this message have been

> removed]

>

>

This message may be coming from a foreign address. If it isn't coming from

, better not click on reply. My address is johnblaisdell@...

Blaisdell

Box 310

Kearny, Az. 85237

5203637491

______________________________________________________

Click here to donate to the Hurricane Katrina relief effort.

http://store./redcross-donate3/

[Guest guest]

susan,

i think you just came across some incredibly stupid people. that is

unfortunate in a support group. i have gone thru many moments of despair. my

heart

goes out to you and i am glad you are with us now.

marsha