REQUESTING INFO ABOUT AS PLEASE.....

[Guest guest]

I AM NEW TO ALL OF THIS. WAS TOLD BY MY NEUROLOGIST THAT I MAY HAVE

AS. AM AWAITING BLOOD TESTS TO BE SURE BUT AM SOMEWHAT CONCERNED ABOUT

THE OUTCOME OF THE TESTS, ETC. MY DOCTOR SEEMS VERY SURE OF HIS

DIAGNOSIS AND THAT MAKES ME SOMEWHAT AFRAID. ANY INFORMATION THAT

COULD BE PASSED ON TO ME WOULD BE GREATLY APPRECIATED. THANKS!!!

[Guest guest]

Hello,

Thank you so much for the welcome and the email. I am

hoping as well that the doctor may be wrong. He seemed

very sure of the possibility and many members of my

family have some form of arthritis. Where would you

recommmend doing research on AS? Your help would be

greatly appreciated and thanks again.

[Guest guest]

Hi . I have joined this group and have found them very helpful:

http://www.spondylitis.org/

Also, you can request information from the Arthritis Foundation as well:

http://www.arthritis.org/SearchResults.asp

Also, there is a lot of information on the web if you do a google search of

Ankylosing Spondylitis.

Let me know if you have any questions.

[Guest guest]

Yes, I can give you a couple of places to try:

http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483

http://www.spondylitis.org/about/main.aspx

http://www.nlm.nih.gov/medlineplus/ankylosingspondylitis.html

These places are pretty reputable and both give a pretty good description of

what AS is. There are others. If you would like to try these first. Hopefully

this will get you some idea. You may have other questions as well. Just let us

know. I hope this is of some help.

Bill

<missey611@...> wrote:

Hello,

Where would you recommmend doing research on AS?

---------------------------------

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

[Guest guest]

Hi ,

Thank you for the information. this is all very new to

me. until only a few days ago, i thought that the

worst of my problems were related to a herniated disc

and nerve damage. I was informed by my neurologist

that he thinks i have AS. When you dont expect a

diagnosis like that and start researching the disease

it is somewhat overwhelming! I am grateful for all of

the emails and help i have received in just one night.

Thank you all sooooo much!

God Bless,

[Guest guest]

_Spondylitis Association of America - Ankylosing Spondylitis and Related

Disease Information & Support_ (http://www.spondylitis.org/)

_Ankylosing Spondylitis NASS Home Page_ (http://www.nass.co.uk/) When the

page opens, click on the blue area for topics.

These two web sites will have a lot of good info. Connie

[Guest guest]

Sorry about the repeat of web site. I should have opened the posts before I

sent. Connie

[Guest guest]

HI ,

I'm fairly new here myself. All of my blood work came back negative,

yet I still have pain. I've had this pain for quite some time

now....thinking...........at least two years and even before the the

birth of my seocond child, who just turned 2.

Glad you found this group.

Talk to you soon,

[Guest guest]

Welcome to our little family . We pray you find what you need from us.

Don't hesitate to ask us questions and possibly you could share your story as

well.

, negative blood work does not mean you do not have one of these lovely

little diseases we all share. We pray you do not have it as I would not wish

these diseases on anyone.

You young folks are very blessed in that they have discovered your problems in

your younger years. Many of us " older folks " waited 10 or more years of

suffering before we were finally diagnosed.

Prayers and Blessings for you all

+Dave

PS: who just finished washing dishes from a banquet. The church ladies have

taken on catering for local banquets to raise money for the church.

PPS: I know I will pay for it in the morning. <GBG>

[Guest guest]

Hi . The really important message is that a Rheumatologist needs to get

you on medications and exercises to keep the disease from getting worse,

especially if you are diagnosed early--that is the key to staying as pain free

as possible and your body as flexible as possible.

Good luck; you are in my prayers.

[Guest guest]

,

Thank you so much! The doctor put me on duregesic pain

patches and increased my neurontin dosage. my

medications are sooooo expensive so the doctor changed

them again and put me on darvocet instead of the

patches. are there any programs that help with the

cost of medications? i dont have medical coverage, i

do have the ohio's best rx discount card, but when you

cant afford the meds, that doesnt do alot of good, ya

know? lol. i really appreciate all of your help and

advice. its really nice to talk to someone who

understands where i am and how i feel and knows that

its not " in my head " . you are in my prayers as well.

god bless,

melissa

--- <linmiller2005@...> wrote:

> Hi . The really important message is that a

> Rheumatologist needs to get you on medications and

> exercises to keep the disease from getting worse,

[Guest guest]

Thank you Dave for your warm welcome. Everyone that i

have spoken to so far has been wonderful and very

helpful to me. I have had back trouble for a little

over ten years now. It all started with a work related

back injury and has progressively gotten worse over

the years. Almost two years ago, i was involved in a

motor vehicle accident that resulted in a herniated

lumbar disc as well as two pinched nerves. So for the

longest time, i as well as my doctors attributed my

pain to the car accident. I went to see my first

neurologist just within the last week and he informed

me that he very strongly believes me to have

ankylosing spondilytis. I am awaiting lab results to

confirm his suspicions but he was very adimit about

his diagnosis. I had studied this disease in nursing

school but never thought that it could possibly be the

cause of my pain. I started to some research and the

more i read, the more disheartened i became. I didnt

realize the potential problems that it could cause. My

husband is a very supportive man most of the time, but

he doesnt understand how this could possibly be the

cause of my severe pain. I think that he is afraid and

assuming the worst possible scenario. how can i help

him to understand what is happening to me and make him

feel more at ease with this? he seems to think that if

the doctors would repair my herniated disc that all my

pain would just magically disappear. i have tried to

explain to him that this doesnt really have an affect

on the herniated disc like he thinks. any suggestions

that anyone could offer would be so greatly

appreciated. and again, thank you all so much for your

help and advice and most of all the friendship of

people who really understand what im going through.

god bless,

melissa

[Guest guest]

Hi ,

thank you for your email. i am currently awaiting my

blood work results. am quite nervous actually. am

really hoping that the doctor could be wrong. i do

look forward to talking with you again soon. its very

nice to find people who know that this pain is real

and not something that we just made up one day out of

the blue! thank you so much for you support.

[Guest guest]

> PS: who just finished washing dishes from a banquet...

Congratulations Dave!!! I can appreciate the joy in being able use my

hands like that...

I can see potential ad-lines:

After hurling record numbers of soapy ceramic discs, Dave iced his

athletic wrists on Pellagrino Cold Packs...

Dave: Frooooossty! Pass the tea!

[Guest guest]

Thanks Math_nawi for your great sense of humour. I tried to stay very much in

the background but a couple of folks in the group we were serving recognized me.

One of them came up and asked what a Bishop was doing, cleaning dishes. I just

reminided him that Jesus washed the disciples feet, and that washing dishes

falls under doing my part. Great witness to folks. I go at it again tomorrow

and Saturday, if I recover from last night <GBG>. I remarked to one of the

ladies that they did not teach dishwashing in seminary. Hazel will not let me

wash dishes at home, even if I cook the meal.

I was so tired that after I got home and had a mug of tea, I just watched a

little TV and then turned it off and went to bed. Woke up at noon today. Best

nights sleep I have had in a long time. The kicker came when I went to take my

morning medications I noticed that I had taken no sleep assisting medications

last night.

Crawling out of bed was another new adventure in pain and stiffness but I felt

good in the way it got that sore after helping the community.

One of my friends in Virginia, who I have known personally for yonks, had this

to say.

" Your part is to bless their endeavor, check the frig for likely left overs, and

depart, smiling, to write your sermon, visit the sick, and proclaim the Good

News. You cannot serve the host with dishpan hands. It is written. "

The ladies had about four plates of food fixed up to take home, as my blood

sugars are not under control I declined them when I left to come home. While I

was fast asleep this morning, one of the ladies dropped off the plates with

Hazel. Thank goodness they did not send any pies.

Blessings to all and your families and friends

+Dave

[Guest guest]

I didnt know that you are a Bishop Dave...

please enlighten me.... one onf by closest friends is an anglican priest, He

was fired because, ( un renewed at least ) he is a practising homosexual.... (

we use the word gay these days)

sounds like your stance has space for all........

Adam

London

[Guest guest]

Hi Milissa,

It's a good thing that your doctor prescribed pain killers. The pain

control can be (is) one huge part of our disease. It was the lack of sleep due

to uncontrolled pain that made me surrender and seek help at our local

emergency room. My wife was losing sleep from the loud moaning I was doing. On

the

couch, of course. I was extremely lucky that the young doctors knew about

ReA, and the pain I was in. They right away injected me with morphine, and I

passed out for the rest of the day. All we hear about painkillers is that

somebody famous is caught abusing them. I have no problem telling people that I

am

only functioning because I am taking them. I am starting my sixth year of pain

control with narcotics, and I have had zero side effects ( except dry-mouth).

I am also very fortunate that my primary-care doctor is open-minded and

compassionate in his work. He let me choose the pain killer I needed.

As for the cost, I have no prescription coverage, so cost is everthing. I was

first prescribed Vicodin, but it took 16 a day to help me. Next was

Oxycontin, which was fantastic, but cost $320/month. I now take Methadone, cost

$40/month, and it works great. A few other people in this great group use

Methadone.

I hope this helps! I'm Harv, in Michigan, I'm 50, ReA since I was 24

[Guest guest]

Adam wrote:

I didnt know that you are a Bishop Dave...

Yes Adam, I am actually an Archbishop but pretty well retired because of my

AS/RA/ReA/PA, Parkinson's and diabetes. But according to St. Augustine we are

indellably marked for the rest of our natural lives as Priests and Bishops. My

actualy job is administrative as the disease has pretty well maxed out my vocal

cords and larnyx. I preach about every other month if I want. I still minister

to people in our small hamlet when they ask and that can be often. I will

participate in Holy Week Divine Liturgies but will use others to lead in

prayers, hymns and such with my attention mainly on the Holy Communion part of

the service.

I am not Anglican as I left the Anglican Church over theological and

ecclesiastical differences. I now am part of the Western Orthodox Church which

is similar but more conservative.

However the answer to the rest of your reply will be off list as it is way off

topic.

Blessings to all

+Dave

[Guest guest]

theological and ecclesiastical differences.

That should read theological and ecclesiological. The latter being the

hierarchies within the Church.

+Dave

[Guest guest]

Hi Adam

As I mentioned in my reply to the list, I am on the Conservative side of the

question.

I believe that sex outside the bonds of Holy Matrimony between one man and one

woman to the exclusion of all others is sin.

Where I differ is in the Priesthood. Priests stand in the front of the

congregation in Persona Christi, (in the person of Christ) and must be above

sin. Being homosexual is not in itself a sin but just like heterosexuals, sex

acts outside of marriage are a sin. Priests are held to a higher standard and

that is where I have problems with relationships.

Do we have homosexuals in our Church, yes, are they celibate, I do not know and

I am not going to hire private detectives to follow them. But like heterosexual

and married priests if they stray then they are called in for a talk. This

would be the same for someone who was involved in any criminal act, not sexual.

The Church cannot be scandalized any further.

As for pedophiles, only a small percentage were homosexual in my experience. I

know too many priests who are supposed to be celibate, spending weekends with

busty blondes or ravishing redheads. Interesting who we run into sometimes when

on holidays. That is built in to the ecclesiology of hierarchical churches

making it easier.

I continue to study the Word of God pray for God's guidance about all of this.

Until it becomes clear I must and will still love the sinner but not condone the

sin.

I am happy though that I am retired from a very active ministry.

+ Francis

BTW I also include gossip as a sin against the Body of Christ.

please enlighten me.... one onf by closest friends is an anglican priest, He

was fired because, ( un renewed at least ) he is a practising homosexual.... (

we use the word gay these days)

sounds like your stance has space for all........

Adam

London

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[Guest guest]

Hi ,

I have a link to a list of rheumatology drugs and their makers with

phone numbers to their aid programs:

http://www.rheumatology.org/public/acrast.asp?aud=pat

I hope that you can find some help.

Char

[Guest guest]

Hi Char,

Thank you for the link to the helpful information. Can

always use some help with medications. I take alot of

different meds and some of them are quite expensive!!

Thanks again.