New Member

[Guest guest]

Thank you for all your responses. Is the band usually covered under insurance and if not, does anyone know the cost? Thanks!

[Guest guest]

>

> Thank you for all your responses. Is the band usually covered under

insurance and if not, does anyone know the cost? Thanks!

>

Luckily our band for our daughter was covered at 90 percent. We live

in Chicago and the band costs $4,100. The cost also covers all the

follow up visits as well. I did a lot of investigating and the

Children's Hospital we are going to has had the most success with the

StarBand.

There was a lot of red tape we had to go through with our insurance

company to make sure they covered durable medical equipment. When your

child gets scanned (gets their head measured), the scan results are

only good for a week before they need to get retested (because they

grow so fast), so there is a bit of a time crunch. The initial scan

cost $300 and it would have cost us $50 to have our daughter

rescanned. Luckily our insurance came through before the week was over

so we didn't have to get her retested. We get the helmet on Feb. 19 so

that should be interesting.

[Guest guest]

I have heard stories that the helmet or band can change the baby's personality. Is this true?

No more than braces will change someone's personality

Elaine (twin A) plagio & tort, 8 1/2 mos, 2nd helmet since 1/5/09

On Sun, Feb 8, 2009 at 10:35 PM, srepsys <repsys@...> wrote:

>> Thank you for all your responses. Is the band usually covered under

insurance and if not, does anyone know the cost? Thanks!>Luckily our band for our daughter was covered at 90 percent. We livein Chicago and the band costs $4,100. The cost also covers all thefollow up visits as well. I did a lot of investigating and the

Children's Hospital we are going to has had the most success with theStarBand. There was a lot of red tape we had to go through with our insurancecompany to make sure they covered durable medical equipment. When your

child gets scanned (gets their head measured), the scan results areonly good for a week before they need to get retested (because theygrow so fast), so there is a bit of a time crunch. The initial scancost $300 and it would have cost us $50 to have our daughter

rescanned. Luckily our insurance came through before the week was overso we didn't have to get her retested. We get the helmet on Feb. 19 sothat should be interesting.

[Guest guest]

Hang in there we all feel like you do at one time or other. Frustrated with meds

hurting feeling old before your time. All I can say is some days are better and

some years are better. I'm having a bad flare with psoriasis right now and have

a trip planned for Florida. But I have about  75 percent of my body covered and

I ache all the time even though I'm on Enbrel and pain meds also have diabetes.

but I just had a pretty good few months. so hang tight.

pat white <pat2862@...>

________________________________

From: marilynmichael1 <mclarke@...>

I guess I have reached the level of frustration as I have started to

search for support from others...

[Guest guest]

Hi ,

Sounds like you have a few situations to seek help for.

I've had PA and fibromyalgia for about 6 yrs now. And the only

advise I would like to contribute is pace yourself.

What ever your problems are and especially because you have a family

you must pace your activities. Even hire someone to do housework or

help with the kids. You have to save what energy you have for the

goods times with your family.

To me laughing is just a good as any meds you may be taking. So if

you can, try to be involved.

A last note, you may want to keep a close watch on your children as

some of your health issues may be passed on to them. Something you

may want to discuss with your dr.

Hang in there.

SD

[Guest guest]

Hi Micheal,

Welcome to the group.

At least you " lucked " out a bit in that treatment for RA is quite

similar to PA in most cases.

Did the MTX help when you were taking it?

Not drinking does suck, but I cheat and have a glass wine about once a

month, I don't suffer any ill effects. And not being able to drink

is a small price to pay for being able to walk.

Ultimately, I see myself as " winning " against this disease at this

point. I'm 48 and have been successfully treating with MTX for over 6

years now. I have my life and mobility back. It's up to me what I do

with it. I know that this could all change much quicker than I want,

but for now, I'm doing great and am so thankful for it.

I hope you find something that works well for you, and keep up a

positive attitude, it makes all the difference.

Stay Well,

[Guest guest]

Thank you. The 'pace yourself' seems to be the most common (sense)

advice I hear about all of this. My fiancee is always telling me that

I try and do too much and then I end up super sore and bummed out

about it all. I guess one just has to adapt to this.

I have spoken to my eldest about this (14) explaining that my father

had severe P and that I now have PA... Also, given that my father

died from ameloidosis which is an immune system problem...it

all seems that my kids should be made aware of all of this for the

challenges that they might face. I wish my father had had things like

Humira. I remember his big patches and putting on cremes and seeking

sun, etc when I was a child (40 years ago). We should be thankful for

the advances that have been made and hopefully a cure for all of this

can be found soon before my kids run into this stuff.

Thank you again

PS: Do some of you ONLY take Humira--no MTX with it? Or does everyone almost

always take the combo? The Humira gives me energy and clears the P right away.

The MTX seems to take away the A in my major joints. I hate taking the MTX and

have been off for about 6 weeks, but I have to admit that I am pretty darn sore

without it. My doc tells me to take the MTX, but I read too much on the

internet ...about liver problems and that makes me want to steer clear if

possible.

[Guest guest]

Hi .....Yes I've been on the drug merry-go-round for a few years where I

felt like all I did was take drugs. The MTX was probably the worst drug I've

ever taken...poison you bet high liver counts, sick feeling, no booze, etc. etc.

After changing rheumy is a great young lady doc that also has rheumatoid

arthritis (RA), put me on Enbrel, prednisone 5mg, and sulfazine 600mg per day.

My life came back to me, probably the best I've felt in 10 years I actually feel

like I don't have this ignorant disease [PsA] at all. Hopefully your insurance

will pay for Enbrel,where it can be quite expensive. Good luck, keep your head

high, don't give up....enjoy the day, Armand

[Guest guest]

, I take only Humira because the MTX did affect my liver. (It

recovered once I went off the MTX as is usually the case.) I wish I

could take the combo, though. They say it works better and that it

likely will make the Humira work longer before failing.

I personally feel that MTX is every bit as safe as Humira, perhaps more

safe because it's been used for more than 30 years and given in much,

much larger doses for cancer. Doctors are very aware of ALL the

potential problems with MTX and know how to avoid them. They can help

you minimize the side effects, which usually diminish over time

anyway. And they monitor your liver function closely and stop the drug

before any permanent damage can be done. I never understand why people

who are willing to take the newer biologicals are so afraid of MTX. I

worry more about what they may discover down the road about the effects

of Humira once it's been on the market longer. Don't get me wrong -

I'm so grateful that Humira has helped my PA and given me some of my

life back. I've been on it for about 2 years, and I feel any slight

risk is worth the benefit it has given me. But I wish I had been able

to stay on good-old MTX longer! best regards, sherry z

[Guest guest]

>

> Do any of you know of a young adult like this with just the

> socialization issues? Should she be seeing an MD, psychiatrist,

> psycologist, or what?

Hi Kim. A 20-something aspie I met recently told me the thing that

finally really helped her was a social support group for aspies her

age. She said seeing how the behaviors looked was motivating. And

she had people to talk to who understood. Since many aspies go to

college, many colleges are starting up support programs for aspies. I

would check where your daughter goes. If she is going away to college

next year, you can pick one that has such a program. Otherwise, you

just have to search for the social groups for aspies. They ARE few

and far between. It sounds like it has already helped motivate her

meeting another aspie, even if she wasn't aware.

The following is the diagnostic criteria for Asperger, so you can see

if it fits your daughter.

Diagnostic Criteria for 299.80 Asperger's Disorder

1. Qualitative impairment in social interaction, as manifested by

at least two of the following:

1. marked impairment in the use of multiple nonverbal

behaviors such as eye-to eye gaze, facial expression, body postures,

and gestures to regulate social interaction

2. failure to develop peer relationships appropriate to

developmental level

3. a lack of spontaneous seeking to share enjoyment,

interests, or achievements with other people (e.g., by a lack of

showing, bringing, or pointing out objects of interest to other people)

4. lack of social or emotional reciprocity

2. Restricted repetitive and stereotyped patterns of behavior,

interests and activities, as manifested by at least one of the following:

1. encompassing preoccupation with one or more stereotyped

and restricted patterns of interest that is abnormal either in

intensity or focus

2. apparently inflexible adherence to specific, nonfunctional

routines or rituals

3. stereotyped and repetitive motor mannerisms (e.g., hand or

finger flapping or twisting, or complex whole-body movements)

4. persistent preoccupation with parts of objects

3. The disturbance causes clinically significant impairment in

social, occupational, or other important areas of functioning.

4. There is no clinically significant general delay in language

(e.g., single words used by age 2 years, communicative phrases used by

age 3 years).

5. There is no clinically significant delay in cognitive

development or in the development of age-appropriate self-help skills,

adaptive behavior (other than in social interaction), and curiosity

about the environment in childhood.

6. Criteria are not met for another specific Pervasive

Developmental Disorder or Schizophrenia.

[Guest guest]

Hi and welcome,

Where are you from? I'm in New Jersey.

I'm Sharon and my son is 18 yrs. old also and has asperger's.

We've know for quite some time now and his is also

mostly social (he's somewhat of a loner). He is very intelligent and if something

interests him he can talk alot about it. He's a great person.

I know what you mean about the glass half empty.

That's how he is also.

He connects well with people older than himself and also children.

When he was younger, he didn't feel like the other

kids his age either (don't think he still does).

He's 18 but doesn't always act like it.

It always seemed to take him longer to do things.

Like walking, talking, writing, tieing his shoes.

He also had problems with his small motor skills,

hence the writing and tieing.

He sees a phsycologist and phschiatrist.

He's a senior in high school and works at

a career development/life skills program.

He talks to people around his own age there,

but will not initiate getting together with them socially.

Anyway, your right in going to the doctor and getting

their opinion. If they don't think it's asperger's and you

still do, I would get another opinion.

Good luck to you both.

Let us know how things work out.

Sharon

From: kimmiraldi <kimmiraldi@...>Subject: ( ) New Member Date: Wednesday, February 25, 2009, 4:53 PM

I beleive my 18 YO daughter may have asperger's. She is very smart, but has no real friends to speak of and makes no attempt to do things with others her age. She gets very frustrated and says she doesn't know how. I have an appointment with a doctor next week. I feel so bad that I never recognized the possiblity of this before. I always knew that something was different, but I just thought she was extremely shy and lacked self-confidence. She feels like something is wrong with her and I can't talk to her, we end up argueing. She always sees the glass half empty with a crack in it. I look at all the info on these websites and I don't feel like any of it describes her except for the socialization issues. She has a very high GPA in high school and is attending college on a dual enrollment. She has no real interest in boys (that I have seen) although she did have lunch wilth a boy the other day and

guess what...(a friend of a friend knows this kid and turns out he has aspergers) my daughter doesn't know this but she said he was wierd and she could see her future and didn't want to be like that. Do any of you know of a young adult like this with just the socialization issues? Should she be seeing an MD, psychiatrist, psycologist, or what?

[Guest guest]

Hi Susie:

Welcome to our wonderful group of caring, loving, informative people.

Sorry to read that you are not feeling well, and in so much pain. I am

glad you had some tests done. Hopefully, they will tell you what you

are dealing with.

When I got hit with RA, I went from a totally functioning woman, to a

woman who could not get out of bed, dress myself, feed myself, etc.

My body swelled so much, plus my hands and fingers went into a claw like

position. I had so much pain I thought I had a Brain Tumor. I could not

walk, and was on crutches, bearly able to move with them. I went to my

PCP who was so shocked when he saw me. He thought right away I had RA,

and did blood work immediately. I had never heard of it before.

My blood work was confirmed that I had RA, and had an appt. the next day

with my Rheumy. She also drew fluid from my knee to see if I had Gout.

I did not, just the RA. That was 5 + years ago.

If you do in fact have RA, I hope you find a wonderful Rheumy, who will

start you on all the necessary meds. and treat it aggresively. That is

what mine did.

Wishing you pain free days.

Hugs,

Barbara

--- In , " susiestepro " <susiestepro@...>

wrote:

>

> Hi Everyone,

>

> I am 39 years old and am having an MRI and RA factor testing next

week. My ordeal began in 2004 with a shingles episode. Since then I have

had aching and stiffness in my right middle finger and some carpal

tunnel symptoms. I thought this was just from typing a lot at my job and

regular arthritis, so I overlooked the symptoms. Then I had an episode

where my big toe on my right foot froze and I could not move it without

major pain. My doctor thought it was a gout episode so I cut down on my

meat intake. Two weeks ago I woke up with a stiff " crick " in my lower

back. It was so bad I could barely get up. As the day progressed, my

upper back around the shoulder area began to hurt also, with tingling

sensations. I instantly thought I was coming down with shingles and went

to an emergency clinic where the gave me antiviral drugs. The symptoms

got better for a few days and then returned EVEN WORSE. Now everything

hurts. It hurts worse when I am very active and when I first get up in

the morning. My trip to the neurologist threw me into shock when he

suggested RA. But it makes so much sense now because my right middle

finger is beginning to appear mishaped in the nuckle area and is stiff

all the time. My cousin also has RA. My question is if any of you have

had shingles problems. It sure seems to me that this all started with

that shingles episode I had 5 years ago. No matter what, this is

affecting my daily life tremendously. I am also worried that something

else beside RA is wrong with me. I am hoping to get information from you

all that might help me figure out if this is what has been wrong with

me. I hear that 20% of people do not test positive for the RA factor. If

I don't test positive, how will I ever know for sure this is my problem?

Thanks for the help.

>

[Guest guest]

hi susie

sorry to hear of your troubles. i've had shingles 2x since i got RA in

97. didn't start with shingles though. i think when your immune system

is wonky you can get more things like shingles.

you may want to take l-lysine to try and ward off another shingles

attack. though my doc says ppl shouldn't get them more than every 8 y or so.

my friend has always had a negative RA factor but her symptoms show that

she does have RA. you don;t neeed the positive RA factor to know. some

ppl have a positive RA factor and no RA. i used to think my RA factor

went up with my disease severity. but recently i've had the worst RA

flare of my life and my RA factor has gone down. so weird.

monique

[Guest guest]

Your symptoms sound very similar to mine before I was diagnosed. I also had an

issue with shingles but I've found the two are completely unrelated excluding

the fact that stress can cause a shingles episode. I wouldn't worry about what

the tests do or not prove at this point until you get the results. However, the

fact that you have RA in your family is not a good sign. I know it's a lot to

worry about but you can't do anything until you get all the information, so why

stress over it?

Stan,

Steattle, Rainy.

[ ] New Member

Hi Everyone,

I am 39 years old and am having an MRI and RA factor testing next week. My

ordeal began in 2004 with a shingles episode. Since then I have had aching and

stiffness in my right middle finger and some carpal tunnel symptoms. I thought

this was just from typing a lot at my job and regular arthritis, so I overlooked

the symptoms. Then I had an episode where my big toe on my right foot froze and

I could not move it without major pain. My doctor thought it was a gout episode

so I cut down on my meat intake. Two weeks ago I woke up with a stiff " crick " in

my lower back. It was so bad I could barely get up. As the day progressed, my

upper back around the shoulder area began to hurt also, with tingling

sensations. I instantly thought I was coming down with shingles and went to an

emergency clinic where the gave me antiviral drugs. The symptoms got better for

a few days and then returned EVEN WORSE. Now everything hurts. It hurts worse

when I am very active and when I first get up in the morning. My trip to the

neurologist threw me into shock when he suggested RA. But it makes so much sense

now because my right middle finger is beginning to appear mishaped in the nuckle

area and is stiff all the time. My cousin also has RA. My question is if any of

you have had shingles problems. It sure seems to me that this all started with

that shingles episode I had 5 years ago. No matter what, this is affecting my

daily life tremendously. I am also worried that something else beside RA is

wrong with me. I am hoping to get information from you all that might help me

figure out if this is what has been wrong with me. I hear that 20% of people do

not test positive for the RA factor. If I don't test positive, how will I ever

know for sure this is my problem? Thanks for the help.

[Guest guest]

>

>

>

> Your symptoms sound very similar to mine before I was diagnosed. I also had an

issue with shingles but I've found the two are completely unrelated excluding

the fact that stress can cause a shingles episode. I wouldn't worry about what

the tests do or not prove at this point until you get the results. However, the

fact that you have RA in your family is not a good sign. I know it's a lot to

worry about but you can't do anything until you get all the information, so why

stress over it?

>

>

>

> Stan,

>

> Steattle, Rainy.

>

> Thank you for replying. I hope I am doing this right, I don't usually use

posting boards! Yes, I think now that the shingles and

RA are unrelated but that maybe the RA caused me to be more prone to shingles

outbreaks. It is so funny how my symptoms come and go. Today, I was nearly

pain free except for some " stone bruise " type feelings on me heels and stiff

fingers. At least the back pain has gone away! I asked my cousin about her RA

factor and she said it did test positive. I will keep you posted on my tests.

Hope you are pain free there in Seattle! Susie in Indiana

> [ ] New Member

>

>

>

>

>

>

> Hi Everyone,

>

> I am 39 years old and am having an MRI and RA factor testing next week. My

ordeal began in 2004 with a shingles episode. Since then I have had aching and

stiffness in my right middle finger and some carpal tunnel symptoms. I thought

this was just from typing a lot at my job and regular arthritis, so I overlooked

the symptoms. Then I had an episode where my big toe on my right foot froze and

I could not move it without major pain. My doctor thought it was a gout episode

so I cut down on my meat intake. Two weeks ago I woke up with a stiff " crick " in

my lower back. It was so bad I could barely get up. As the day progressed, my

upper back around the shoulder area began to hurt also, with tingling

sensations. I instantly thought I was coming down with shingles and went to an

emergency clinic where the gave me antiviral drugs. The symptoms got better for

a few days and then returned EVEN WORSE. Now everything hurts. It hurts worse

when I am very active and when I first get up in the morning. My trip to the

neurologist threw me into shock when he suggested RA. But it makes so much sense

now because my right middle finger is beginning to appear mishaped in the nuckle

area and is stiff all the time. My cousin also has RA. My question is if any of

you have had shingles problems. It sure seems to me that this all started with

that shingles episode I had 5 years ago. No matter what, this is affecting my

daily life tremendously. I am also worried that something else beside RA is

wrong with me. I am hoping to get information from you all that might help me

figure out if this is what has been wrong with me. I hear that 20% of people do

not test positive for the RA factor. If I don't test positive, how will I ever

know for sure this is my problem? Thanks for the help.

>

>

>

>

>

[Guest guest]

>

> hi susie

>

> sorry to hear of your troubles. i've had shingles 2x since i got RA in

> 97. didn't start with shingles though. i think when your immune system

> is wonky you can get more things like shingles.

> you may want to take l-lysine to try and ward off another shingles

> attack. though my doc says ppl shouldn't get them more than every 8 y or so.

> my friend has always had a negative RA factor but her symptoms show that

> she does have RA. you don;t neeed the positive RA factor to know. some

> ppl have a positive RA factor and no RA. i used to think my RA factor

> went up with my disease severity. but recently i've had the worst RA

> flare of my life and my RA factor has gone down. so weird.

>

> monique

>Thanks so much for your reply. I hope I am doing this right because I don't

usually post things on boards till I came down with this! I hate to hear about

your recent attack and I hope you are feeling better. How strange that your

shingles would happen AFTER and mine BEFORE. Sometimes I wonder if our immune

systems may be fighting that virus, which of course can never be destroyed, and

we are suffering the attack? Just a thought, but this stuff is so strange that

I am not sure of anything! I have been in terrible pain for 2 weeks and now

today I am virtually pain free except for a " stone bruise " type feeling on my

heels and finger stiffness. This stuff just strikes whenever it chooses,

unbeknownst to us! I agree with you that you dont have to have a positive RA

test for it to be RA. I am pretty much convinced at this point because it comes

and goes, unlike most arthritis I have heard of. I hope you are feeling better

and I will pray for you. I'll let you know what my tests reveal this week.

Wishing you good health, Susie in Indiana

[Guest guest]

>

> Hi! i have joined this group to get information for my husband. He

> has not been diagnosed with RA yet. About a month ago he started

> with joint pain all over, hands, knees, shoulders. Also he was very

> tired and had a cough and shortness of breath. He went to his

> internist who ordered a chest xray, sed rate, RA blood test, and

> crp. The sed rate came back very high, the crp came back high, and

> the RA was slightly above normal. The chest xray came back not good

> at all. He was sent for a ct of the lung and he has a lung disease

> with scarring in the lungs. He was sent to a pulmonologist who ran

> pulmonary function test that came back bad. The lung doctor put him

> on prednisone. He was then sent to a rheumy who ordered many, many

> lab tests. The sed rate came down a little with the prednisone, the

> crp is normal, but the RA has gone up very high. The rheumy does not

> think he has RA but the lung doctor does. The lung and rheumy want

> my husband to have a lung biopsy to find out what is causing all of

> this. My husband wants to wait a while because he is scared of the

> biopsy. He would be in the hospital 2 days with a chest tube.

>

> Have any of you with RA had lung problems with it?

>

> Lynn J.

>Hi I am a new member too. I am also awaiting diagnosis. I do know that I

sometimes have pain in my rib cage, and when my bladder is full my lungs hurt.

It is a lot like pleursy, inflammation in the lining sac around your lungs. I

am sure if he already has a lung condition the RA would definitely worsen it a

lot. I read somewhere on the internet that it is possible for RA to affect

internal organs and the lungs is one of those organs. I would also be looking

for possibly another rheumatologist and get a second opinion about the RA. I am

also worried that there will become a debate about whether or not I have the RA

disease. I have heard of many people who say their Rheumatologist is reluctant

to make a final diagnosis of RA. Good luck to you and I hope your husband feels

better soon. I will say prayers for you. I can only imagine how you must feel.

God Bless You Both. Susie in Indiana

[Guest guest]

Hi Susie:

I have had Pneumonia so many times I have lost count

The time I had it 2 years ago, they discovered many Noduels in my lung.

I had many chest x-rays, CAT scan, and finally the P.E.T. test which

looks deeper into the lungs. They finally went away, but had several of

the P.E.T.'s to make sure my lungs were clear. Thank God they are gone.

I too, see my lung specialist annually, unless I am having lung problems

Hope things go better for your hubby.

Hugs,

Barbara

> >

> > Hi! i have joined this group to get information for my husband. He

> > has not been diagnosed with RA yet. About a month ago he started

> > with joint pain all over, hands, knees, shoulders. Also he was very

> > tired and had a cough and shortness of breath. He went to his

> > internist who ordered a chest xray, sed rate, RA blood test, and

> > crp. The sed rate came back very high, the crp came back high, and

> > the RA was slightly above normal. The chest xray came back not good

> > at all. He was sent for a ct of the lung and he has a lung disease

> > with scarring in the lungs. He was sent to a pulmonologist who ran

> > pulmonary function test that came back bad. The lung doctor put him

> > on prednisone. He was then sent to a rheumy who ordered many, many

> > lab tests. The sed rate came down a little with the prednisone, the

> > crp is normal, but the RA has gone up very high. The rheumy does not

> > think he has RA but the lung doctor does. The lung and rheumy want

> > my husband to have a lung biopsy to find out what is causing all of

> > this. My husband wants to wait a while because he is scared of the

> > biopsy. He would be in the hospital 2 days with a chest tube.

> >

> > Have any of you with RA had lung problems with it?

> >

> > Lynn J.

> >Hi I am a new member too. I am also awaiting diagnosis. I do know

that I sometimes have pain in my rib cage, and when my bladder is full

my lungs hurt. It is a lot like pleursy, inflammation in the lining sac

around your lungs. I am sure if he already has a lung condition the RA

would definitely worsen it a lot. I read somewhere on the internet that

it is possible for RA to affect internal organs and the lungs is one of

those organs. I would also be looking for possibly another

rheumatologist and get a second opinion about the RA. I am also worried

that there will become a debate about whether or not I have the RA

disease. I have heard of many people who say their Rheumatologist is

reluctant to make a final diagnosis of RA. Good luck to you and I hope

your husband feels better soon. I will say prayers for you. I can only

imagine how you must feel. God Bless You Both. Susie in Indiana

>

[Guest guest]

Hi Susie!

My RA factor came back negative but the doctor said that about 20% of those with

RA do come back negative. However, other blood tests were off the charts such

as CRP and SED rate. My CRP was 31.0 which is very high. For me it was a

matter of many things adding up to be diagnosed with RA. At the same time that

I was diagnosed with RA I suddenly developed asthma! Never had that before, but

when it kicked in it was no fun and games! Fortunately my husband had it as a

child and he knew what to do for me when the first attack happened.

My Godmother just passed last March from RA and Chronic Obstructive Pulmonary

Disease (COPD). She'd battled it for over 60 years and taken every RX on the

market. She was a runner when she was younger. I have no idea how she ran with

RA and COPD but she did.

Hugs,

Judy

land

> >

> > Hi! i have joined this group to get information for my husband. He

> > has not been diagnosed with RA yet. About a month ago he started

> > with joint pain all over, hands, knees, shoulders. Also he was very

> > tired and had a cough and shortness of breath. He went to his

> > internist who ordered a chest xray, sed rate, RA blood test, and

> > crp. The sed rate came back very high, the crp came back high, and

> > the RA was slightly above normal. The chest xray came back not good

> > at all. He was sent for a ct of the lung and he has a lung disease

> > with scarring in the lungs. He was sent to a pulmonologist who ran

> > pulmonary function test that came back bad. The lung doctor put him

> > on prednisone. He was then sent to a rheumy who ordered many, many

> > lab tests. The sed rate came down a little with the prednisone, the

> > crp is normal, but the RA has gone up very high. The rheumy does not

> > think he has RA but the lung doctor does. The lung and rheumy want

> > my husband to have a lung biopsy to find out what is causing all of

> > this. My husband wants to wait a while because he is scared of the

> > biopsy. He would be in the hospital 2 days with a chest tube.

> >

> > Have any of you with RA had lung problems with it?

> >

> > Lynn J.

> >Hi I am a new member too. I am also awaiting diagnosis. I do know that I

sometimes have pain in my rib cage, and when my bladder is full my lungs hurt.

It is a lot like pleursy, inflammation in the lining sac around your lungs. I

am sure if he already has a lung condition the RA would definitely worsen it a

lot. I read somewhere on the internet that it is possible for RA to affect

internal organs and the lungs is one of those organs. I would also be looking

for possibly another rheumatologist and get a second opinion about the RA. I am

also worried that there will become a debate about whether or not I have the RA

disease. I have heard of many people who say their Rheumatologist is reluctant

to make a final diagnosis of RA. Good luck to you and I hope your husband feels

better soon. I will say prayers for you. I can only imagine how you must feel.

God Bless You Both. Susie in Indiana

>

[Guest guest]

Welcome to the group.

Raniolo

From: kay.wilde <kay.wilde@...>

Subject: [ ] New Member

Date: Wednesday, March 25, 2009, 2:33 PM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay

[Guest guest]

Thank you . I can't tell you how relieved I am to have found the group.

 

Maybe I should share a little about myself.  I’m a secretary by day and I

write at night and weekends. My children are grown and I live alone.

 

I had my first attack or what ever else they choose to call it about three years

ago. I was at work and my right wrist began aching. I figured I’d simply

overdone it and went out on my lunch hour and got a wrap for support. The pain

got progressively worse. By the time I left the office, my left wrist began to

hurt. Within two hours, I was unable to use either hand, from wrist to

fingertips. I couldn’t even pull down my own pants to go to the restroom. The

pain was excruciating, and I was in a panic. My hands keep a roof over my head

and food on the table. I had no clue what was going on. My daughter came over

and took me to the emergency room.

 

Test and xrays revealed nothing. Two weeks previously I’d had bronchitis, and

it was assumed that I still had infection in my system that had attacked my

joints. Another round of antibiotics and Naproxen, and within a few days I was

back to normal.

 

No further problems until about six months ago, after painting my living room

and hallway, I had another episode, only this time it was my entire right arm

and hand. Once again, the pain was excruciating, only this time I decided to

tough it out, thinking I’d simply overdone it and it would go away. Two days

later found me in my doctor’s office. Guess what? I had a kidney infection, so

it was assumed it was again simply and infection attacking the joints. Same

treatment, same results. Within a few days I was fine.

 

Then a few weeks later, it hit again, with shorter periods between episodes,

seeming to get progressively worse.  A month ago found me back in the emergency

room, unable to use either hand or wrist. Cortisone injection and Prednisone for

a week following plus prescription pain killers. Only this time the tests did

show arthritis. As a result, my doctor referred me to a rheumatologist.  I

couldn’t get in for nearly three months. Which is not necessarily a bad

thing.  It gave me some time to do some research, and the ability to ask

intelligent, educated  questions when I do finally get in to see her. 

 

The swelling and pain in my right wrist and thumb, and the three center fingers

in my left had have been almost constant for the past month and a half..

 

I’ve been getting by, gutting it out taking Glucosamine/Contrition, Black

Cherry capsules, and over the counter pain killers, not even sure it they are

doing any good at all, but would rather try those first before going on the

prescription arthritis medications and stronger pain meds that scare me to

death. Heck, I even tried the “so called, gin soaked raisin cureâ€. Didn’t

work for me.

 

Needless to say, as a secretary and writer, the inability to function normally

using my hands scares me to death. I’ve lived alone for a long time and

feeling helpless and being forced to depend on one of my children when it gets

bad is intolerable.

 

So, here I am, looking for answers from someone who knows what it’s like, from

someone who knows just how painful it really is without treating me like I’m a

wimp. I’m someone who, if I could avoid it, would take no drugs at all -

don’t have a lot of faith in drug companies who make more money in treating

illness than finding a cure for it. However, when the pain is at its worst,

I’d take damn near anything to find some relief. But then I’m sure you all

know what I’m talking about.

 

As you can see, I’m just starting out here, hoping to find something that

works for me, and avoid some of the wrong treatment pitfalls along the way. I

really haven’t had much time to read back through past group posts where I’m

sure I’ll find a wealth of information, but from the activity on the group, I

have a feeling that will take a while.

 

Looking forward to getting to know everyone.

 

Best,

Kay

 

Kay Wilde

Website: http://www.kaywilde.com

 

From: kay.wilde <kay.wilde (DOT) com>

Subject: [ ] New Member

@gro ups.com

Date: Wednesday, March 25, 2009, 2:33 PM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay

[Guest guest]

Welcome, Kay! This is a very supportive group, and our wonderful

moderator, , keeps us well educated by posting lots of pertinent

articles.

What works for one person may not work for someone else. That could be

the reason for the contradictions that you've found.

As to side effects, the drug companies have to list every symptom that

anyone ever suffered while on the drug. That doesn't mean that you

will get all of those side effects. You might not get any of them. If

you do, the doctor can switch you to something else.

I've been on one of the biologics for over five years, and have no

adverse side effects.

Good luck!

Sue

On Mar 25, 2009, at 2:33 PM, kay.wilde wrote:

> Hi Everyone!

>

> I just joined. I have been tenatively diagnosed with rheumatoid

> arthritis and have been referred to a rheumatologist. My first

> appointment is scheduled for April 27th. I've been researching

> everything I can find and have found that one site contradicts the

> other on information about what works and what doesn't. More than

> anything I'm concerned about taking medication that reports so many

> possible side effects.

[Guest guest]

Thanks Sue,

 

Nice to meet you. Yeah, I know that medications work differently for everyone

It's all trial and error. It the errors that worry me. One problem I'm already

dealing with beyond the obvious is that I was diagnosed with an ulcer before

this even started. Many of even the over the counter pain killers that seem to

work bother me.and I know that is one of the problems with many of the arthritis

medication.

 

Just starting out, trying to weed through and digest all the info I can. Still,

it's nice to know that someone has found something that works for them with few

side effects.

 

Kay

Kay Wilde

Website: http://www.kaywilde.com

 

> Hi Everyone!

>

> I just joined. I have been tenatively diagnosed with rheumatoid

> arthritis and have been referred to a rheumatologist. My first

> appointment is scheduled for April 27th. I've been researching

> everything I can find and have found that one site contradicts the

> other on information about what works and what doesn't. More than

> anything I'm concerned about taking medication that reports so many

> possible side effects.

[Guest guest]

Hi Kay:

    I want to welcome you to our wonderful group.  I know you will be happy to

be a member here.  Lots of support, kindness, compassion, and knowledge.

    Hoping you feel better soon.  Nice to meet you.

Hugs,

 

Barbara

From: kay.wilde <kay.wilde@...>

Subject: [ ] New Member

Date: Wednesday, March 25, 2009, 11:33 AM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay

[Guest guest]

Barbara,

 

Thank you for the warm welcome. I might be new to dealing with arthritis but I

learned long ago that no one understands what you are going through like someone

who is dealing with the same issue themselves. Guess it's true that misery not

only loves company, they need it as well.

 

Kay

From: kay.wilde <kay.wilde (DOT) com>

Subject: [ ] New Member

@gro ups.com

Date: Wednesday, March 25, 2009, 11:33 AM

Hi Everyone!

I just joined. I have been tenatively diagnosed with rheumatoid arthritis and

have been referred to a rheumatologist. My first appointment is scheduled for

April 27th. I've been researching everything I can find and have found that one

site contradicts the other on information about what works and what doesn't.

More than anything I'm concerned about taking medication that reports so many

possible side effects.

I don't know why I didn't thing about trying to find a group sooner... and there

you were. In my opinion, there is no better or more reliable source of

information than someone who is going through the same problems.

I'm currently at work and haven't had time to look through past posts to get to

know everyone. I'll do that after I get home this evening.

Kay