Hello All

[Guest guest]

Hi

Thank you for posting, I think you are younger than most of us and it was great to hear your perspective.

I am 33 and I just had my first child, she has bleph. There is a 50/50 chance with each pregnancy/birth. That explains why some have and others in your family do not. In my family, it's my grandfather, my dad, me and my daughter. None of the other siblings have ever had it. I think my grandfather was a de novo (first person in family to have it) and that explains why although he had a number of siblings, none of them have it.

I agree with you, if my parents had been scared I wouldn't be here, and I knew the chances that my daughter would have it but I never ruled out becoming a mom because of it.

After some difficulties, it looks like we have found a surgeon we like who is experienced and confident about helping our baby. She is the best thing that ever happened to us, and is healthy in every way. She has fairly severe ptosis, and her eyes are smallish, but doesn't appear to have a problem with the other areas of her eyes.

I am curious, was this your first surgery? What did you have done? You might have posted this earlier, I apologize, I am new to the group and possibly overlooked it.

Beth

Stayce <stayce0317@...> wrote:

Hey Everyone!Wow, it's been about 6 months since I last visited this group and I can't believe how much it has grown! I've had one surgery since my last post in February. Everything went well; I forgot how the "I just got out of surgery" look was. I went through my usual OH my god I look awful stage but after that, it's all ok. The biggest thing was my eye balls were actually bruised so they were bright red for about 2 weeks. Other than that, it was ok. My eyesight is getting worse, which does worry me. I'm 21 now, and starting to worry about once I do have children, will they have blephs. I think it's a fear because everyone just wants a healthy perfect baby. I'm a bit unclear about how it's passed on. My grandfather had it, my dad does, I do and my sister does. However my uncle (my dad's brother) has it, but his daughter

doesn't have it. (I'm not sure if it's a 50/50 chance thing or the possibility of my uncle not really being the birth father) If someone knows the chance of passing it I would greatly appreciate it. I still believe even with the challenges I've been dealt w/, no percentage is going to stop me from having a child. It would be different b/c of all the medical updates we have now vs. when I was younger. Plus I wouldn't be here today if my parents didn't have me just b/c they were scared.Also I see the before and after pictures and I can't help but to wonder what else could be done to make my appearance better. If anyone has any doctor suggestions I would greatly appreciate that! Distance really wouldn't be a problem. Thanks to all of yall!-Stayce

[Guest guest]

Hi Stayce,

Our wee guy is perfect and healthy and has bleph:) I wouldn't let it be a fear, if you are able to have children, which I hope you are, don't let having a chance of your baby having bleph be a reason not to have children at all! some woman cannot even get pregnant....I can't imagine not being able to experience being pregnant and giving birth, it is the MOST amazing thing a woman could experience!

-- blepharophimosis hello all

Hey Everyone!Wow, it's been about 6 months since I last visited this group and I can't believe how much it has grown! I've had one surgery since my last post in February. Everything went well; I forgot how the "I just got out of surgery" look was. I went through my usual OH my god I look awful stage but after that, it's all ok. The biggest thing was my eye balls were actually bruised so they were bright red for about 2 weeks. Other than that, it was ok. My eyesight is getting worse, which does worry me. I'm 21 now, and starting to worry about once I do have children, will they have blephs. I think it's a fear because everyone just wants a healthy perfect baby. I'm a bit unclear about how it's passed on. My grandfather had it, my dad does, I do and my sister does. However my uncle (my dad's brother) has it, but his daughter doesn't have it. (I'm not sure if it's a 50/50 chance thing or the possibility of my uncle not really being the birth father) If someone knows the chance of passing it I would greatly appreciate it. I still believe even with the challenges I've been dealt w/, no percentage is going to stop me from having a child. It would be different b/c of all the medical updates we have now vs. when I was younger. Plus I wouldn't be here today if my parents didn't have me just b/c they were scared.Also I see the before and after pictures and I can't help but to wonder what else could be done to make my appearance better. If anyone has any doctor suggestions I would greatly appreciate that! Distance really wouldn't be a problem. Thanks to all of yall!-Stayce

[Guest guest]

Beth-

I'm 21 and no, def. not my first surgery. I pretty much lost count

after 20 surgeries, most when I was younger. My first surgery was at

6 months, earlier than what I've noticed for some people. After that

I've had everything from the sling, as many have had, to muscle from

my leg to my eye lid, skin behind my ear transferred to under my eye.

I have the fold put into my eye lid. I was in about 6th grade and

just wanted to be like everyone else. Looking back, that's one I wish

I didn't have. Now it's clear it's like a fold permantly and really

fake. Plus it's practically impossible to get both sides even so one

is folded farther to the end than the other (if that makes sense).

This past surgery, they tried to realign my eyes so my left eye

didn't drift in a different direction, plus they tightened the

muscles in my eye lids. I had a problem w/ focusing on something like

driving or on the computer and not being able to focus on it. As

weird as that sounds but like I would be focusing on something and my

eyes would jump so fast that I wouldn't be able to focus on anything.

I still have problems w/ sunlight and my eyes not producing enough

tears. I'm supposed to use drops, which I try to remember and they do

help. Plus the last surgery did help w/ being able to focus on

objects. That could have nothing what so ever to do w/ my bleph but

just icing on the cake of life I've gotten a lot better w/

dealing w/ people's questions and comments. I think a lot of it comes

w/ age, once you get past middle school/high school, comments get

fewer, and I personally am more comfortable/confident w/ myself now

too. Talk to you guys later

[Guest guest]

Stayce

Thank you for responding, I had no idea you had that many surgeries.

You are very brave. I wish you all the best.

I have problems with sunlight and dry eyes, too. And my left eye has

always turned although glasses with a prism have helped.

I have to agree, for most people, not just those with BPES, life

gets much better after high school is over.

I admire you, when I was your age I would not have been able to

participate in a group like this or talk about my surgeries.

Best wishes to you in your endeavors

Beth

--- In blepharophimosis , " Stayce " <stayce0317@y...>

wrote:

>

> Beth-

> I'm 21 and no, def. not my first surgery. I pretty much lost

count

> after 20 surgeries, most when I was younger. My first surgery was

at

> 6 months, earlier than what I've noticed for some people. After

that

> I've had everything from the sling, as many have had, to muscle

from

> my leg to my eye lid, skin behind my ear transferred to under my

eye.

> I have the fold put into my eye lid. I was in about 6th grade and

> just wanted to be like everyone else. Looking back, that's one I

wish

> I didn't have. Now it's clear it's like a fold permantly and

really

> fake. Plus it's practically impossible to get both sides even so

one

> is folded farther to the end than the other (if that makes sense).

> This past surgery, they tried to realign my eyes so my left eye

> didn't drift in a different direction, plus they tightened the

> muscles in my eye lids. I had a problem w/ focusing on something

like

> driving or on the computer and not being able to focus on it. As

> weird as that sounds but like I would be focusing on something and

my

> eyes would jump so fast that I wouldn't be able to focus on

anything.

> I still have problems w/ sunlight and my eyes not producing enough

> tears. I'm supposed to use drops, which I try to remember and they

do

> help. Plus the last surgery did help w/ being able to focus on

> objects. That could have nothing what so ever to do w/ my bleph

but

> just icing on the cake of life I've gotten a lot better w/

> dealing w/ people's questions and comments. I think a lot of it

comes

> w/ age, once you get past middle school/high school, comments get

> fewer, and I personally am more comfortable/confident w/ myself

now

> too. Talk to you guys later

[Guest guest]

Hi Marina,

Glad you went to Vegas! So sorry about your father-in-law. I will keep you in

my thoughts and prayers. Take care of yourself and try to get some rest.

Gentle hugs - Tracie

[ ] Hello All

Sorry I haven't been posting lately. I was trying to get a masssive

flare under control then I went to Vegas. That was a blast. But,

it wasn't easy. I had to really pace myself while there. What to

do, what to do, hmm. Well, I paced my butt right into a chair in

front of a slot machine!! I broke even, so that was good!! I ended

up with bronchitis (at least I hope that's all it is). Must have

gotten it from the airplane. I don't know. I know I over did it,

so who knows. Oh, well. I am fighting a flare right now. I just

got my new bed in. They delivered and assembled it for me this

morning. I got Select Number with a memory foam topper. So far I

do like it. I get 30 days in home trial, so I will give it some

time. I got the adjustable frame with it, so it works like a

craftmatic adjustable bed. One thing I didn't know about when I

bought it was that it also has a vibator in it!! If I lay in the

middle of the bed it hits me perfectly at each shoulder and on my

calves. I can also change the intensity of the vibration as well as

make it wave up and down.

To all the new people, I want to extend a warm welcome.

Tonya, my methotrexate make me nauseated as well. It didn't do that

at first, but it gradually snuck up on me. Just as I think I'm

getting over that little side effect, it's time to take them again!

I finally got my injectable MTX. CVS pharmacy was able to locate it

and had it in within a week. I haven't started it yet. Gonna wait

until friday.

June, glad to hear that things went well for you. Hang in there and

get well soon!! I will say a little prayer for you tonight.

I found out that my sister's father-in-law passed away while we were

in Vegas. He had been sick for sometime now. He was as much a part

of our family as her husband, her son, our own dad, ect..ever was.

We are having the memorial on Saturday afternoon up in Cleveland.

Well, gotta run. Take care to all. Gentle Hugs...Marina

[Guest guest]

Hi Marina,

Glad you went to Vegas! So sorry about your father-in-law. I will keep you in

my thoughts and prayers. Take care of yourself and try to get some rest.

Gentle hugs - Tracie

[ ] Hello All

Sorry I haven't been posting lately. I was trying to get a masssive

flare under control then I went to Vegas. That was a blast. But,

it wasn't easy. I had to really pace myself while there. What to

do, what to do, hmm. Well, I paced my butt right into a chair in

front of a slot machine!! I broke even, so that was good!! I ended

up with bronchitis (at least I hope that's all it is). Must have

gotten it from the airplane. I don't know. I know I over did it,

so who knows. Oh, well. I am fighting a flare right now. I just

got my new bed in. They delivered and assembled it for me this

morning. I got Select Number with a memory foam topper. So far I

do like it. I get 30 days in home trial, so I will give it some

time. I got the adjustable frame with it, so it works like a

craftmatic adjustable bed. One thing I didn't know about when I

bought it was that it also has a vibator in it!! If I lay in the

middle of the bed it hits me perfectly at each shoulder and on my

calves. I can also change the intensity of the vibration as well as

make it wave up and down.

To all the new people, I want to extend a warm welcome.

Tonya, my methotrexate make me nauseated as well. It didn't do that

at first, but it gradually snuck up on me. Just as I think I'm

getting over that little side effect, it's time to take them again!

I finally got my injectable MTX. CVS pharmacy was able to locate it

and had it in within a week. I haven't started it yet. Gonna wait

until friday.

June, glad to hear that things went well for you. Hang in there and

get well soon!! I will say a little prayer for you tonight.

I found out that my sister's father-in-law passed away while we were

in Vegas. He had been sick for sometime now. He was as much a part

of our family as her husband, her son, our own dad, ect..ever was.

We are having the memorial on Saturday afternoon up in Cleveland.

Well, gotta run. Take care to all. Gentle Hugs...Marina

[Guest guest]

Hi Marcia,

I also have R/R MS since 1990 and did very well until I had surgery two years ago. The surgery did me in, I have not been the same since. Now I have to walk with a cane and look like I'am drunk when I walk. It seems surgery and MS are not a good mix.

Take Care, Sally

[Guest guest]

Hi Sally, sorry to hear ou've been having such a hard time. I have heard that

trauma, childbirth, surgery, etc does negatively affect the MS patient. If you

dont mind sharing, what kind of surgery did you have and are you on the LDN? If

on, were you on prior to surgery or after? And has it helped you improve any?

Hi Marcia, thank you for sharing your experience. It is very inspiring!

Best wishes to the boh of you.

A Worrier of the Light sometimes thinks: " If I do not do something, it will not

be done " . It is not quite like that: He must act, but he must allow room for the

Universe to act too. --o Coelho

[Guest guest]

Oh Marcia,

You made me cry. That is so great to hear. I am so happy that you had such

wonderful changes.

Aletha

[low dose naltrexone] Hello All

> Hello All,

> I've been reading your messages for about three months now and thank you

> for your inspiration.

>

> I have RRMS, Dx'd in 1964. I have never used any CRAB drugs, in spite of

> neuros trying to talk me into them -- I just didn't trust them. I've

> lived a busy, active life as a single mother with two jobs, few relapses

> until about four years ago, when I was diagnosed with Thyroid cancer.

> After

> the thyroid was taken out I relapsed big time and did intensive IV steroid

> therapy for two weeks and haven't been able to walk without a cane, stand

> for more than a few minutes and just got a wheelchair when I discovered

> LDN. I started LDN on October 10, 2005, so it's been almost three months.

>

> I experienced improvements almost immediately, within the first week and

> since I have regained some balance, better bladder control, less muscle

> spasms, numbness and pain. I can walk without the cane in my

> apartment. But I think the biggest change is HOPE for the first time in

> 40-plus years.

>

> I did have some sleepless nights at first and still do occasionally but

> most of the time I sleep like a brick! Haven't slept that well in many

> years. I have colorful, very pleasant dreams. I don't drink coffee or

> tea

> or colas. My appetite is much improved and my hair and nails are growing

> rapidly. My libido has improved. And depression has gone. I no longer

> feel the internal earthquakes that kept me shaking.

>

> Thanks all...and Happy New Year!

> Marcia

>

>

>

>

>

>

>

[Guest guest]

surgery did me in as well.......I kinda feel it is the anesthesia

On 1/3/06, Aletha Wittmann <Aletha@...> wrote:

Oh Marcia,You made me cry. That is so great to hear. I am so happy that you had suchwonderful changes.

Aletha [low dose naltrexone] Hello All> Hello All,> I've been reading your messages for about three months now and thank you

> for your inspiration.>> I have RRMS, Dx'd in 1964. I have never used any CRAB drugs, in spite of> neuros trying to talk me into them -- I just didn't trust them. I've> lived a busy, active life as a single mother with two jobs, few relapses

> until about four years ago, when I was diagnosed with Thyroid cancer.> After> the thyroid was taken out I relapsed big time and did intensive IV steroid> therapy for two weeks and haven't been able to walk without a cane, stand

> for more than a few minutes and just got a wheelchair when I discovered> LDN. I started LDN on October 10, 2005, so it's been almost three months.>> I experienced improvements almost immediately, within the first week and

> since I have regained some balance, better bladder control, less muscle> spasms, numbness and pain. I can walk without the cane in my> apartment. But I think the biggest change is HOPE for the first time in

> 40-plus years.>> I did have some sleepless nights at first and still do occasionally but> most of the time I sleep like a brick! Haven't slept that well in many> years. I have colorful, very pleasant dreams. I don't drink coffee or

> tea> or colas. My appetite is much improved and my hair and nails are growing> rapidly. My libido has improved. And depression has gone. I no longer> feel the internal earthquakes that kept me shaking.

>> Thanks all...and Happy New Year!> Marcia>>>>>>>

[Guest guest]

Oh, Honey! That SUCKS! I hope they get you straight real soon. Rest and TRY to

relax.

MAry JAne

marina_troi <marina_troi@...> wrote:

Hello, everyone!! I know I've been absent for a little over 2

months, now. First off, I want to send out warm welcomes to all the

newbies. I would also like to send out a great big hug to those who

kept me in their prayers.

The last few months have proven challenging to me. I was in the

hospital for 8 days back in early December. I was admitted with a

temp of 104, and with a lot of pain. Turns out I had

pyleonephritis. Sever kidney infection, on both sides. After I was

dischared, I went on antibiotic pills. The first round didn't help,

so my rheumy changed it to a different one. That one didn't work,

either. We knew that they were effective against the bacteria,

based on the sensitivity results. But for some reason, it didn't

work for me. To top it off, all the antibiotics that would work

against this bacteria were ones that I am allergic to!! So, I took

big doses of benadryl with it. The week after being discharged, I

had a knee scope done. That helped my knee pain out sooooo much.

It was so bad that I couldn't put weight on my right leg because of

the pain and it would give out! Fortunately the articular surface

looked great! Just a few small tears that were easily cleaned up.

My patella was a mess. He cleaned it up and heat treated it. I

still have some pain with it and I can't kneel on my right knee yet,

but I know it will take a while for it to heal. I am also so behind

on my physical therapy because of the kidney infection.

Well, January 2 I ended up back in the ER. I was admitted again.

This time for 8 days. They did surgery to remove my kidney stones.

It was thought that the stones could be harboring the infection and

that's why I can't shake it. Well, the one big stone was lasered

and then the pieces sent to lab. The other stones are inbedded into

the kidney. So, they are not going anywhere right now. They think

that the infection is what caused a lot of swelling in both kidneys

and in doing so, the stones became inbedded. They have a thin layer

of tissue over them, so they think that they should be sterile.

Well, I was discharged after 8 days and a day and a half later I

went to see my family doc because my symptoms got real bad. I

couldn't even walk into the office. They brought a wheel chair out

for me. He took one look at me and said that he was going to get me

a bed at the hospital. So, I was admitted directly from his

office. Now, these last two admissions, they put me on the

telemetry floor (heart monitor), My heart rate was running about

15o or more. Well, this time they decided to put in a groshong so I

could start on home antibiotic treatment. They tried to put in a

PIC line into my upper arm, but my veins are so bad from the

dehydration and multiple phlebitis sites from previous IV's. I have

3 veins in my right arm alone that have shut down. Can't even get

blood out of them. I was going through IV's every couple of hours.

Well, one of the surgeons I know put in the groshong for me.

So, I was sent home the next day and a day and a half later, I was

back in the ER. My temp was up, my pain leverl was up, my stomach

content was up (dry heaving sucks!!), and my potassium was down. So,

after giving me lots of fluid and potassium replacement, I was

starting to feel a little better. They kept asking me if I wanted

to stay or go home. I wanted to go home. I don't know why they

bothered asking me, because they called my doc and he wanted me

admittied. Well, this time I got lots of fluid with potassium added

to it, they gave me IV doses of steroids which helped the RA

tremendously, and pain meds.

I have lost about 60 pounds over the last 3 months. I don't

recommend this diet, though!! I am still very weak. I have been

walkin up and down my stairs frequently and go to the store with my

family so I can walk as much as I can. I've been trying to build up

my strength. Sometimes I go too far and pay the piper. But, I can

know get half way up my stair case before I have to pause. Before,

I could only go up one or two steps before I had to pause. I

started my Enbrel and Methotrexate again. I think part of the

weakness and fatigue could be the RA. I haven't been able to take

any of my pills since Thanksgiving and I was off the Enbrel because

of the vasculitis.

So, with all these admitions, I had become so weak that I couldn't

get myself out of bed or off the toilet. That is awfull. I hate

having to depend on someone else. I'm just not used to being the

patient,

So, at this point and time, I am eating a little, very little. But

I am getting in as much fluids as I can. That helps. My tempature

has been going back up. I had some lab work done today and just

waiting for those results. If they come back clean, then I can go

to the surgeon to get my groshong removed.

So, that's it, in a nutshell. It's been an awfull couple of

months. I have been trying to keep up with the posts, but that has

proven to be difficult. My eyes are so blurry from the drugs.

I pray that everyone is well. Take care, Hugs and Prayers, Marina

[Guest guest]

Woah, that's a colossal nutshell. Hang in there.

[a newbie]

Bargeman <mtbargeman30@...> wrote:

Oh, Honey! That SUCKS! I hope they get you straight real soon. Rest and TRY to

relax.

MAry JAne

marina_troi <marina_troi@...> wrote:

Hello, everyone!! I know I've been absent for a little over 2

months, now. First off, I want to send out warm welcomes to all the

newbies. I would also like to send out a great big hug to those who

kept me in their prayers.

The last few months have proven challenging to me. I was in the

hospital for 8 days back in early December. I was admitted with a

temp of 104, and with a lot of pain. Turns out I had

pyleonephritis. Sever kidney infection, on both sides. After I was

dischared, I went on antibiotic pills. The first round didn't help,

so my rheumy changed it to a different one. That one didn't work,

either. We knew that they were effective against the bacteria,

based on the sensitivity results. But for some reason, it didn't

work for me. To top it off, all the antibiotics that would work

against this bacteria were ones that I am allergic to!! So, I took

big doses of benadryl with it. The week after being discharged, I

had a knee scope done. That helped my knee pain out sooooo much.

It was so bad that I couldn't put weight on my right leg because of

the pain and it would give out! Fortunately the articular surface

looked great! Just a few small tears that were easily cleaned up.

My patella was a mess. He cleaned it up and heat treated it. I

still have some pain with it and I can't kneel on my right knee yet,

but I know it will take a while for it to heal. I am also so behind

on my physical therapy because of the kidney infection.

Well, January 2 I ended up back in the ER. I was admitted again.

This time for 8 days. They did surgery to remove my kidney stones.

It was thought that the stones could be harboring the infection and

that's why I can't shake it. Well, the one big stone was lasered

and then the pieces sent to lab. The other stones are inbedded into

the kidney. So, they are not going anywhere right now. They think

that the infection is what caused a lot of swelling in both kidneys

and in doing so, the stones became inbedded. They have a thin layer

of tissue over them, so they think that they should be sterile.

Well, I was discharged after 8 days and a day and a half later I

went to see my family doc because my symptoms got real bad. I

couldn't even walk into the office. They brought a wheel chair out

for me. He took one look at me and said that he was going to get me

a bed at the hospital. So, I was admitted directly from his

office. Now, these last two admissions, they put me on the

telemetry floor (heart monitor), My heart rate was running about

15o or more. Well, this time they decided to put in a groshong so I

could start on home antibiotic treatment. They tried to put in a

PIC line into my upper arm, but my veins are so bad from the

dehydration and multiple phlebitis sites from previous IV's. I have

3 veins in my right arm alone that have shut down. Can't even get

blood out of them. I was going through IV's every couple of hours.

Well, one of the surgeons I know put in the groshong for me.

So, I was sent home the next day and a day and a half later, I was

back in the ER. My temp was up, my pain leverl was up, my stomach

content was up (dry heaving sucks!!), and my potassium was down. So,

after giving me lots of fluid and potassium replacement, I was

starting to feel a little better. They kept asking me if I wanted

to stay or go home. I wanted to go home. I don't know why they

bothered asking me, because they called my doc and he wanted me

admittied. Well, this time I got lots of fluid with potassium added

to it, they gave me IV doses of steroids which helped the RA

tremendously, and pain meds.

I have lost about 60 pounds over the last 3 months. I don't

recommend this diet, though!! I am still very weak. I have been

walkin up and down my stairs frequently and go to the store with my

family so I can walk as much as I can. I've been trying to build up

my strength. Sometimes I go too far and pay the piper. But, I can

know get half way up my stair case before I have to pause. Before,

I could only go up one or two steps before I had to pause. I

started my Enbrel and Methotrexate again. I think part of the

weakness and fatigue could be the RA. I haven't been able to take

any of my pills since Thanksgiving and I was off the Enbrel because

of the vasculitis.

So, with all these admitions, I had become so weak that I couldn't

get myself out of bed or off the toilet. That is awfull. I hate

having to depend on someone else. I'm just not used to being the

patient,

So, at this point and time, I am eating a little, very little. But

I am getting in as much fluids as I can. That helps. My tempature

has been going back up. I had some lab work done today and just

waiting for those results. If they come back clean, then I can go

to the surgeon to get my groshong removed.

So, that's it, in a nutshell. It's been an awfull couple of

months. I have been trying to keep up with the posts, but that has

proven to be difficult. My eyes are so blurry from the drugs.

I pray that everyone is well. Take care, Hugs and Prayers, Marina

[Guest guest]

My gosh you have been through a lot. I hope there are no more hospital

visits for you in a long time. Thanks for the update.

Terri

[ ] Hello all

> Hello, everyone!! I know I've been absent for a little over 2

> months, now. First off, I want to send out warm welcomes to all the

> newbies. I would also like to send out a great big hug to those who

> kept me in their prayers.

>

> The last few months have proven challenging to me. I was in the

> hospital for 8 days back in early December. I was admitted with a

> temp of 104, and with a lot of pain. Turns out I had

> pyleonephritis. Sever kidney infection, on both sides. After I was

> dischared, I went on antibiotic pills. The first round didn't help,

> so my rheumy changed it to a different one. That one didn't work,

> either. We knew that they were effective against the bacteria,

> based on the sensitivity results. But for some reason, it didn't

> work for me. To top it off, all the antibiotics that would work

> against this bacteria were ones that I am allergic to!! So, I took

> big doses of benadryl with it. The week after being discharged, I

> had a knee scope done. That helped my knee pain out sooooo much.

> It was so bad that I couldn't put weight on my right leg because of

> the pain and it would give out! Fortunately the articular surface

> looked great! Just a few small tears that were easily cleaned up.

> My patella was a mess. He cleaned it up and heat treated it. I

> still have some pain with it and I can't kneel on my right knee yet,

> but I know it will take a while for it to heal. I am also so behind

> on my physical therapy because of the kidney infection.

>

> Well, January 2 I ended up back in the ER. I was admitted again.

> This time for 8 days. They did surgery to remove my kidney stones.

> It was thought that the stones could be harboring the infection and

> that's why I can't shake it. Well, the one big stone was lasered

> and then the pieces sent to lab. The other stones are inbedded into

> the kidney. So, they are not going anywhere right now. They think

> that the infection is what caused a lot of swelling in both kidneys

> and in doing so, the stones became inbedded. They have a thin layer

> of tissue over them, so they think that they should be sterile.

>

> Well, I was discharged after 8 days and a day and a half later I

> went to see my family doc because my symptoms got real bad. I

> couldn't even walk into the office. They brought a wheel chair out

> for me. He took one look at me and said that he was going to get me

> a bed at the hospital. So, I was admitted directly from his

> office. Now, these last two admissions, they put me on the

> telemetry floor (heart monitor), My heart rate was running about

> 15o or more. Well, this time they decided to put in a groshong so I

> could start on home antibiotic treatment. They tried to put in a

> PIC line into my upper arm, but my veins are so bad from the

> dehydration and multiple phlebitis sites from previous IV's. I have

> 3 veins in my right arm alone that have shut down. Can't even get

> blood out of them. I was going through IV's every couple of hours.

> Well, one of the surgeons I know put in the groshong for me.

>

> So, I was sent home the next day and a day and a half later, I was

> back in the ER. My temp was up, my pain leverl was up, my stomach

> content was up (dry heaving sucks!!), and my potassium was down. So,

> after giving me lots of fluid and potassium replacement, I was

> starting to feel a little better. They kept asking me if I wanted

> to stay or go home. I wanted to go home. I don't know why they

> bothered asking me, because they called my doc and he wanted me

> admittied. Well, this time I got lots of fluid with potassium added

> to it, they gave me IV doses of steroids which helped the RA

> tremendously, and pain meds.

>

> I have lost about 60 pounds over the last 3 months. I don't

> recommend this diet, though!! I am still very weak. I have been

> walkin up and down my stairs frequently and go to the store with my

> family so I can walk as much as I can. I've been trying to build up

> my strength. Sometimes I go too far and pay the piper. But, I can

> know get half way up my stair case before I have to pause. Before,

> I could only go up one or two steps before I had to pause. I

> started my Enbrel and Methotrexate again. I think part of the

> weakness and fatigue could be the RA. I haven't been able to take

> any of my pills since Thanksgiving and I was off the Enbrel because

> of the vasculitis.

>

> So, with all these admitions, I had become so weak that I couldn't

> get myself out of bed or off the toilet. That is awfull. I hate

> having to depend on someone else. I'm just not used to being the

> patient,

>

> So, at this point and time, I am eating a little, very little. But

> I am getting in as much fluids as I can. That helps. My tempature

> has been going back up. I had some lab work done today and just

> waiting for those results. If they come back clean, then I can go

> to the surgeon to get my groshong removed.

>

> So, that's it, in a nutshell. It's been an awfull couple of

> months. I have been trying to keep up with the posts, but that has

> proven to be difficult. My eyes are so blurry from the drugs.

>

> I pray that everyone is well. Take care, Hugs and Prayers, Marina

>

>

>

>

>

>

[Guest guest]

Hi Marina,

Sounds like you have been through an ordeal and a half!! I am sorry

to hear about the hospitalization. I know what you mean about

wanting to be discharged to go home, who wouldn't, right? They come

in your room constantly for tests and blood work. You never get any

rest at the hospital. You say you are not used to being the patient,

did you work as medical personnel before RA?

You sound like you take a lot of meds -- maybe that is why the

lethargy or weakness you talk about. I feel sluggish after taking

the NSAIDS (diclofenac) and don't return to self unless I skip a

day. I also return to severe pain when I skip a day. Catch-22.

Are you getting enough fluids with all of those meds? It seems like

a lot of work for your kidneys. A catch-22 either way you look at it

however. Ask the MD how much water should you be taking in or see a

nutritionist. I have been trying to up my intake of water. I am bad

with that normally but lately I have been trying harder. I notice an

improvement in pain level even if just a little when I take in 2 cups

in one sitting and more of a relief if I do this every couple of

hours. Try to avoid coffee but it is my weakness, a habit I picked

up from the husband. I do go long periods before I fall off the

wagon or is it go on the wagon or the lamb? Hahaha! Even then I

limit it to 1/2 a cup of coffee. Coffee dehydrates you.

Anyway, take care keep, doing your exercises, and stay hydrated. Oh

and laugh as often as you can. I know it is hard to do through the

pain, but very necessary if we want to live longer and keep our

sanity. I have a joke I get from my supervisor I will post for you

below so that you have at least have a smile today:

JOKE FOR THE DAY:

-- Three men wanted to cross a river. They had no idea how to cross

it, so one man knelt down on his knees and prayed " Lord give me the

power and strength tO cross the river. " suddenly the man became very

strong and swam across the river. The next man thought: if it worked

for him, it'll work for me. So he knelt down and prayed " Lord give

the skills and the strength to cross the river. " the man built a

canoe and rowed himself across the river. The last man thought: if it

worked for both of them, I know it'll work for me. So he also knelt

down and prayed " Lord give me the wisdom and knowledge to cross the

river. " He turned into a woman and walked across the bridge. --

Best wishes,

Ebony

[Guest guest]

I agree with you Ebony, besides moral support, this group needs a little humor.

OK, guys, everyone tries to post a little something funny.

True story:

My grandson Jake, age 5, found out Mom was giving a baby shower for one of her

best friend. She gave him strict orders not to mess up the house because she

expected many guests. Jake understood and promised he was going to be on his

best behavior, which he did.

Enters, Jerusha, Jake's nanny. As soon as she entered the house he proceeds to

tell her that no one can mess up the house because " Mom is having a baby-wash. "

Cheers,

Ebony <stillbreathing29@...> wrote:

Hi Marina,

Sounds like you have been through an ordeal and a half!! I am sorry

to hear about the hospitalization. I know what you mean about

wanting to be discharged to go home, who wouldn't, right? They come

in your room constantly for tests and blood work. You never get any

rest at the hospital. You say you are not used to being the patient,

did you work as medical personnel before RA?

You sound like you take a lot of meds -- maybe that is why the

lethargy or weakness you talk about. I feel sluggish after taking

the NSAIDS (diclofenac) and don't return to self unless I skip a

day. I also return to severe pain when I skip a day. Catch-22.

Are you getting enough fluids with all of those meds? It seems like

a lot of work for your kidneys. A catch-22 either way you look at it

however. Ask the MD how much water should you be taking in or see a

nutritionist. I have been trying to up my intake of water. I am bad

with that normally but lately I have been trying harder. I notice an

improvement in pain level even if just a little when I take in 2 cups

in one sitting and more of a relief if I do this every couple of

hours. Try to avoid coffee but it is my weakness, a habit I picked

up from the husband. I do go long periods before I fall off the

wagon or is it go on the wagon or the lamb? Hahaha! Even then I

limit it to 1/2 a cup of coffee. Coffee dehydrates you.

Anyway, take care keep, doing your exercises, and stay hydrated. Oh

and laugh as often as you can. I know it is hard to do through the

pain, but very necessary if we want to live longer and keep our

sanity. I have a joke I get from my supervisor I will post for you

below so that you have at least have a smile today:

JOKE FOR THE DAY:

-- Three men wanted to cross a river. They had no idea how to cross

it, so one man knelt down on his knees and prayed " Lord give me the

power and strength tO cross the river. " suddenly the man became very

strong and swam across the river. The next man thought: if it worked

for him, it'll work for me. So he knelt down and prayed " Lord give

the skills and the strength to cross the river. " the man built a

canoe and rowed himself across the river. The last man thought: if it

worked for both of them, I know it'll work for me. So he also knelt

down and prayed " Lord give me the wisdom and knowledge to cross the

river. " He turned into a woman and walked across the bridge. --

Best wishes,

Ebony

[Guest guest]

In a message dated 2/13/2006 6:50:10 AM Central Standard Time,

ksamedifference@... writes:

Good grief gal! You sure have been through it these

last couple of months. Bless your heart! I will

continue to keep you in my prayers. Good to have you

posting again!!!! Hang in there sweetie! Take care.

Kim

Marina, everything she said. hugs

[Guest guest]

Good grief gal! You sure have been through it these

last couple of months. Bless your heart! I will

continue to keep you in my prayers. Good to have you

posting again!!!! Hang in there sweetie! Take care.

Kim

--- marina_troi <marina_troi@...> wrote:

> Hello, everyone!! I know I've been absent for a

> little over 2

> months, now. First off, I want to send out warm

> welcomes to all the

> newbies. I would also like to send out a great big

> hug to those who

> kept me in their prayers.

>

> The last few months have proven challenging to me.

> I was in the

> hospital for 8 days back in early December. I was

> admitted with a

> temp of 104, and with a lot of pain. Turns out I

> had

> pyleonephritis. Sever kidney infection, on both

> sides. After I was

> dischared, I went on antibiotic pills. The first

> round didn't help,

> so my rheumy changed it to a different one. That

> one didn't work,

> either. We knew that they were effective against

> the bacteria,

> based on the sensitivity results. But for some

> reason, it didn't

> work for me. To top it off, all the antibiotics

> that would work

> against this bacteria were ones that I am allergic

> to!! So, I took

> big doses of benadryl with it. The week after being

> discharged, I

> had a knee scope done. That helped my knee pain out

> sooooo much.

> It was so bad that I couldn't put weight on my right

> leg because of

> the pain and it would give out! Fortunately the

> articular surface

> looked great! Just a few small tears that were

> easily cleaned up.

> My patella was a mess. He cleaned it up and heat

> treated it. I

> still have some pain with it and I can't kneel on my

> right knee yet,

> but I know it will take a while for it to heal. I

> am also so behind

> on my physical therapy because of the kidney

> infection.

>

> Well, January 2 I ended up back in the ER. I was

> admitted again.

> This time for 8 days. They did surgery to remove my

> kidney stones.

> It was thought that the stones could be harboring

> the infection and

> that's why I can't shake it. Well, the one big

> stone was lasered

> and then the pieces sent to lab. The other stones

> are inbedded into

> the kidney. So, they are not going anywhere right

> now. They think

> that the infection is what caused a lot of swelling

> in both kidneys

> and in doing so, the stones became inbedded. They

> have a thin layer

> of tissue over them, so they think that they should

> be sterile.

>

> Well, I was discharged after 8 days and a day and a

> half later I

> went to see my family doc because my symptoms got

> real bad. I

> couldn't even walk into the office. They brought a

> wheel chair out

> for me. He took one look at me and said that he was

> going to get me

> a bed at the hospital. So, I was admitted directly

> from his

> office. Now, these last two admissions, they put me

> on the

> telemetry floor (heart monitor), My heart rate was

> running about

> 15o or more. Well, this time they decided to put in

> a groshong so I

> could start on home antibiotic treatment. They

> tried to put in a

> PIC line into my upper arm, but my veins are so bad

> from the

> dehydration and multiple phlebitis sites from

> previous IV's. I have

> 3 veins in my right arm alone that have shut down.

> Can't even get

> blood out of them. I was going through IV's every

> couple of hours.

> Well, one of the surgeons I know put in the groshong

> for me.

>

> So, I was sent home the next day and a day and a

> half later, I was

> back in the ER. My temp was up, my pain leverl was

> up, my stomach

> content was up (dry heaving sucks!!), and my

> potassium was down. So,

> after giving me lots of fluid and potassium

> replacement, I was

> starting to feel a little better. They kept asking

> me if I wanted

> to stay or go home. I wanted to go home. I don't

> know why they

> bothered asking me, because they called my doc and

> he wanted me

> admittied. Well, this time I got lots of fluid with

> potassium added

> to it, they gave me IV doses of steroids which

> helped the RA

> tremendously, and pain meds.

>

> I have lost about 60 pounds over the last 3 months.

> I don't

> recommend this diet, though!! I am still very weak.

> I have been

> walkin up and down my stairs frequently and go to

> the store with my

> family so I can walk as much as I can. I've been

> trying to build up

> my strength. Sometimes I go too far and pay the

> piper. But, I can

> know get half way up my stair case before I have to

> pause. Before,

> I could only go up one or two steps before I had to

> pause. I

> started my Enbrel and Methotrexate again. I think

> part of the

> weakness and fatigue could be the RA. I haven't

> been able to take

> any of my pills since Thanksgiving and I was off the

> Enbrel because

> of the vasculitis.

>

> So, with all these admitions, I had become so weak

> that I couldn't

> get myself out of bed or off the toilet. That is

> awfull. I hate

> having to depend on someone else. I'm just not used

> to being the

> patient,

>

> So, at this point and time, I am eating a little,

> very little. But

> I am getting in as much fluids as I can. That

> helps. My tempature

> has been going back up. I had some lab work done

> today and just

> waiting for those results. If they come back clean,

> then I can go

> to the surgeon to get my groshong removed.

>

> So, that's it, in a nutshell. It's been an awfull

> couple of

> months. I have been trying to keep up with the

> posts, but that has

> proven to be difficult. My eyes are so blurry from

> the drugs.

>

> I pray that everyone is well. Take care, Hugs and

> Prayers, Marina

>

>

>

>

__________________________________________________

[Guest guest]

Rommie,

What state do you live in? If you're in the New Jersey/PA/NY area,

let me know. I live in New Jersey. I just looked at the Vitalzym

ingredients, and noticed silcon dioxide was part of it. I've heard

mixed opinions on this, some say we could possibly be sensitive to

it because of the silicone that's already in our bodies, others say

it's not the same substance. Maybe you can ask your holistic doctor

about this - although if he doesn't have an opinion on whether

implants make us sick, he may not have the answer. I have taken

digestive enzymes over the years, and have relied on them quite a

bit since I got implants in and out. One thing I notice, I have to

regulate my intake of them, because if I take too many I get

constipated. For a while I had to take one a day, and then I was

taking them every other day, all depends on the output, so to

speak. Also, here's something I've noticed lately, too - I started

drinking one glass of water with a slice of fresh lemon in it each

morning, and I haven't had to take any digestive enzymes in weeks -

and before I had to take them every day or two or I'd have trouble.

I definitely think the enzymes are beneficial to us, though - I just

haven't taken them lately because I'm curious about the lemon water.

Sis

--- In , Rose Avant <rosezy54@...>

wrote:

>

> Hello to all:

>

> Went to see a Dr. Nusbaum on the 28Th of Feb. 2006, he is also

into

> Holistic medicine, I thought I might as well get started on

cleaning up

> my body after I get these toxic time bombs out on the 2ND of

March, 06.

> He did not say nothing bad against them, but when I said that I

was

> going to have them taken out because my problems all started right

> after

> they were put in, he said well maybe that wont be such a bad

ideal. He

> told me about an extra strength systemic enzyme supplement that he

> would like to put me on at my next visit in 3 wks. It is called :

> VITALZYM,

> there web site is: www.worldnutrition.info

> this will help you detoxification, by helping rid the liver of

> toxins. anyway you can read about it for yourself,.and the whole

trip

> was

> expensive and I had to just make myself give in to pay, because

how

> much

> is good health worth? Let me see! I spent $6,500 to put this

poison

> into

> my system now I want to cry about spending money to get them out

and to

> get some help with cleansing my system, " ROMMIE " you need to

check

> yourself. He also told me to continue with the Dr. that is running

test

> after test trying to figure out what is wrong with me, it's kind

of

> funny because they all can see that something is going wrong with

the

> body

> but they don't know what it is.........

>

> " I DO ! "

>

> Yesterday while I was at the hospital having an echo cardiogram

to

> see why my heart is now slightly enlarged, another thing that has

> occured

> since the implants.

> my bone density test shows hot spots in my chest, my chest on

both

> sides are so very sore, High liver enzymes, Back pain upper and

lower.

> So today is the day my loving friends, Iam so very ready.

> You all will be hearing from me soon as I am able to type.

>

> Much love,

>

> Rommie

>

>

>

>

>

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

>

> Bring photos to life! New PhotoMail makes sharing a breeze.

>

[Guest guest]

<<She is hospitalized due to a broken

collar bone and

a slightly punctured lung. <<

Oh, my goodness, Michele, that's awful! I hope she is feeling better

very soon!

Hugs,

Donna

>

> To all:

>

> WAnted to say that I agree with the post that Donna must be gracious

and a class act

> to forgive so quickly. It was recognized.

>

> I am really not playing the feel sorry for me role here, but I guess

due to all that negative

> energy I threw out there my kid did suffer. She is hospitalized due

to a broken collar bone and

> a slightly punctured lung. The school staff did NOT see her fall

and may have moved her due

> to her becoming aggressive. Aggressions are how she deals with pain

because of her past history

> of abuse. Hopefully we will be released soon.

>

> So I say again that all negative energies are leaving and my

positiveness is back and in full force. I got the wake-up call, a

little tough, but nonetheless, I smell that coffee brewing. God Bless

YOU ALL !

>

> Michele

> ________________________________________________________________________

> Check out the new AOL. Most comprehensive set of free safety and

security tools, free access to millions of high-quality videos from

across the web, free AOL Mail and more.

>

>

>

[Guest guest]

Michele,

Bless your hearts... what a terrible accident!

Please don¹t feel that ³negative energy² had ANYTHING to do with your

daughter¹s accident... these things just happen... to all of us (although

it does seem to some more than others, confound it all). It¹s our family

joke that it¹s a really good thing we only live 2 blocks from the hospital.

We don¹t fit into our house AT ALL anymore but I really don¹t like to think

of moving away from that hospital... it was such a comfort when I had to

call 911 (found my 3 year old unconscious after his first seizure) and they

were here in less than a minute. Bless us all! Some days just go better

than others.

Caroline

From: <isoaa@...>

Reply-< >

Date: Sat, 16 Sep 2006 11:45:57 -0400

< >

Subject: Hello All

I am really not playing the feel sorry for me role here, but I guess due to

all that negative

energy I threw out there my kid did suffer. She is hospitalized due to a

broken collar bone and

a slightly punctured lung. The school staff did NOT see her fall and may

have moved her due

to her becoming aggressive. Aggressions are how she deals with pain because

of her past history

of abuse. Hopefully we will be released soon.

[Guest guest]

Deborah,

Thank you for the information. I am impatiently waiting for my appointment on Wednesday with the rheumatologist. Does it take a long time for the medications to work? I really want to get back on track for the summer. Right now, I am limited to some degree in what I do. It seems like when I use my hands, they swell further and cause more pain, but I don't have a choice. I have to use my hands.

Kim

----- Original Message -----

From: Deborah Bargad

Rheumatoid Arthritis

Sent: Sunday, May 25, 2008 4:55 AM

Subject: Re: Hello all

Dear Kim- The disease itself needs to be curbed by a biologic. Remicade or Rituxan. You will be put on Methotrexate too which will slow down the RA cell division. Getting your disease under control quickly is essential to avoid damage which you already aware of. You will find chronic fatigue and Fibromyalgia are common with RA. You should advocate for yourself also. Be a proactive participant in your care. I would find the Arthritis Foundation's Local Chapter Office in your state. Go to www.arthritisfoundation.org for more information. Since it is your first visit, The standard pain meds are all you can use. Ask your doctor for Prescription strength Ibuprofen 800mg and take 2 or 3 tablets. You can also ask for a few days worth of Darvocet but it does cause nausea so be sure to take it with food. Once you stop the inflammation cascade that causes you to have pain and swelling, you will feel better. Once you get on a biologic, you should see improvement quite quickly. I know I did. I have been on remicade for many years and it still works for me. Your RA factor and Your Sed Rate are important players in your blood work. Once you start feeling better your Sed Rate should start to go down. Do not work the part of your body during a flare. Use Ice or Heat depending on what feels better to you. Good Luck. Email anytime. Yours, Deborah. RA since 1994.

On Wed, May 21, 2008 at 11:56 AM, Kim on <hockim2stny (DOT) rr.com> wrote:

Hi all,I am fairly familiar with RA. My mother-in-law has had it her entire adult life and is now crippled with it. I've heard about her various treatments and seen the toll it has taken on her. Unfortunately, now I'm getting an even closer view of RA as I was finally diagnosed two weeks ago and have quickly developed symptoms. My husband's terminology is, "It hit fast and hard."I have not seen the rheumatologist yet. There is only one within 30 miles and he deals with all the autoimmune diseases in our area. Originally, my appointment was set up for July, but a cancellation will allow me to get in next Wednesday. I just have a couple of questions:How did you manage pain while waiting for the meds to kick in? My regular dr. didn't give me any pain medication. She gave me Prednisone (10 mg/day) and Ambien because I wasn't sleeping for more than an hour at a time for almost two weeks. I am taking 800 mg of Advil at a time, but it doesn't seem to be helping. I am still having shooting pains all over my body.Do any of you have neck involvement with your RA? I've had neck problems for years that was resolved after neck surgery. Now, after more than a year of feeling better, my neck is acting up again. It is stiff and sore and causing daily headaches. It is much worse when it is rainy.Are there any questions that you wished you had asked your dr. but didn't?Thank you for any information.Kim

[Guest guest]

Marcia,

Great idea! I'll check it out.

Kim

----- Original Message -----

From: Marcia Stoyle

Rheumatoid Arthritis

Sent: Sunday, May 25, 2008 1:21 PM

Subject: Re: Hello all

hi, Kim! a quick fix for your hands is to pick up a pair of elasticgloves, with the finger-tips cut off. I wear my daily atwork...computer input all day long. Some of us have special orderedthese from different websites, but I have seen them at my pharmacy. Onthe aisle with the ACE elastic bandges, knee brace bandages, and such. gentle hugs! Marcia--- Kim on <hockim2stny (DOT) rr.com> wrote:> Deborah,> > Thank you for the information. I am impatiently waiting for my> appointment on Wednesday with the rheumatologist. Does it take a> long time for the medications to work? I really want to get back on> track for the summer. Right now, I am limited to some degree in what> I do. It seems like when I use my hands, they swell further and> cause more pain, but I don't have a choice. I have to use my hands.> > Kim> > ----- Original Message ----- > From: Deborah Bargad > Rheumatoid Arthritis > Sent: Sunday, May 25, 2008 4:55 AM> Subject: Re: Hello all> > > Dear Kim- The disease itself needs to be curbed by a biologic. > Remicade or Rituxan. You will be put on Methotrexate too which will> slow down the RA cell division. Getting your disease under control> quickly is essential to avoid damage which you already aware of. You> will find chronic fatigue and Fibromyalgia are common with RA. You> should advocate for yourself also. Be a proactive participant in> your care. I would find the Arthritis Foundation's Local Chapter> Office in your state. Go to www.arthritisfoundation.org for more> information. Since it is your first visit, The standard pain meds> are all you can use. Ask your doctor for Prescription strength> Ibuprofen 800mg and take 2 or 3 tablets. You can also ask for a few> days worth of Darvocet but it does cause nausea so be sure to take it> with food. Once you stop the inflammation cascade that causes you to> have pain and swelling, you will feel better. Once you get on a> biologic, you should see improvement quite quickly. I know I did. I> have been on remicade for many years and it still works for me. Your> RA factor and Your Sed Rate are important players in your blood work.> Once you start feeling better your Sed Rate should start to go down.> Do not work the part of your body during a flare. Use Ice or Heat> depending on what feels better to you. Good Luck. Email anytime.> Yours, Deborah. RA since 1994.> > > > On Wed, May 21, 2008 at 11:56 AM, Kim on> <hockim2stny (DOT) rr.com> wrote:> > Hi all,> > I am fairly familiar with RA. My mother-in-law has had it her> entire > adult life and is now crippled with it. I've heard about her> various > treatments and seen the toll it has taken on her. Unfortunately,> now > I'm getting an even closer view of RA as I was finally diagnosed> two > weeks ago and have quickly developed symptoms. My husband's > terminology is, "It hit fast and hard."> > I have not seen the rheumatologist yet. There is only one within> 30 > miles and he deals with all the autoimmune diseases in our area. > Originally, my appointment was set up for July, but a> cancellation > will allow me to get in next Wednesday. I just have a couple of > questions:> > How did you manage pain while waiting for the meds to kick in? My> > regular dr. didn't give me any pain medication. She gave me > Prednisone (10 mg/day) and Ambien because I wasn't sleeping for> more > than an hour at a time for almost two weeks. I am taking 800 mg> of > Advil at a time, but it doesn't seem to be helping. I am still > having shooting pains all over my body.> > Do any of you have neck involvement with your RA? I've had neck > problems for years that was resolved after neck surgery. Now,> after > more than a year of feeling better, my neck is acting up again.> It > is stiff and sore and causing daily headaches. It is much worse> when > it is rainy.> > Are there any questions that you wished you had asked your dr.> but > didn't?> > Thank you for any information.> > Kim > > > > > > >

[Guest guest]

Thank you all again for all the advice.

I've had a difficult couple of weeks. Friday I was in so much pain that nothing was working. I took baths, Advil, used ice, but nothing was successful. I was up all night and started having chest pain and dizziness early in the morning. When I started having diarrhea I woke my husband up and we went to the hospital. My blood pressure was extremely high, but my heart was okay except for my fast heart rate (100+) which I've had for almost a year.

The er dr. was concerned about my thyroid and added it to the bloodwork. My regular dr. called me Monday to say that I had hyopthyroidism and that I had to start medication. Wednesday I had my first appointment with the rhematologist. He said that my symptoms didn't fit hypothyroidism, but they did fit hyperthyroidism. Also, he wasn't sure about the arthritis because my bloodwork was borderline and my symptoms were pretty good that day. He ended up doing a lot of bloodwork. That night, my regular dr. called me again and said that my thyroid test came back and was at the other end of the spectrum, but on the lower end of normal. There was such a discrepancy in the two thyroid test that they didn't know what was going on. I have no clue what is going on, but I'm still in pain and am frustrated.

I have had some better days. Usually cool, dry days are good. Rainy, stormy days are very bad. The day I saw the rhematologist, I had very little pain and only mild inflamation. I think he is thinking fybromyalgia instead of ra, but I'm wondering if it could be both. My fingers, toes, and wrists are so sore.

Does anyone have any ideas on the thyroid? I looked up the symptoms and I don't fit hypothyroidism, but I was curious, so I looked up the hyperthyroid sypmtoms. I fit 90% of them. What about the ra? If my tests are borderline what does that mean?

Thanks.

Kim

----- Original Message -----

From: Harold Van Tuyl

Rheumatoid Arthritis

Sent: Monday, May 26, 2008 4:07 PM

Subject: RE: Hello all

Hi again Kim,

When I first got RA I was in the hospital with pneumonia and because of my weakened condition my RA was able to take control. My rheumatologist prescribed 40 mg Prednisone daily while waiting for the DMARDs (Disease-Modifying Anti-Rheumatic Drugs) to take effect. It took me almost a year and several increases in medication before I could finally get off Prednisone but at first it was sufficient to allow me to struggle out of bed to go to the bathroom. Prednisone is usually the fastest-acting source of relief for RA problems but it also has bad side effects so we usually try to get off it as soon as we reasonably can. Ibuprofen is the best OTC medication I know about as an anti-inflammatory and I think that is usually a major constituent of Advil but here are enough different kinds of Advil you have to look each one up to be sure. When I had pericarditis because of my RA (inflammation around my heart) my cardiologist had me use both Prednisone and Ibuprofen and told me to wean off the Prednisone first when I got better and then wean off the Ibuprofen. I guess the same advice may be best for you. You may need to increase the Prednisone to get the amount of relief you seek, but remember that there are bad side effects to almost any medication so the less the better.

Some people are affected by weather, possibly because of the low pressure that usually accompanies rain rather than the rain itself. I don’t have that problem so I’m not speaking from experience. God bless.

Harold

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Kim onSent: Wednesday, May 21, 2008 7:56 AMRheumatoid Arthritis Subject: Hello all

Hi all,I am fairly familiar with RA. My mother-in-law has had it her entire adult life and is now crippled with it. I've heard about her various treatments and seen the toll it has taken on her. Unfortunately, now I'm getting an even closer view of RA as I was finally diagnosed two weeks ago and have quickly developed symptoms. My husband's terminology is, "It hit fast and hard."I have not seen the rheumatologist yet. There is only one within 30 miles and he deals with all the autoimmune diseases in our area. Originally, my appointment was set up for July, but a cancellation will allow me to get in next Wednesday. I just have a couple of questions:How did you manage pain while waiting for the meds to kick in? My regular dr. didn't give me any pain medication. She gave me Prednisone (10 mg/day) and Ambien because I wasn't sleeping for more than an hour at a time for almost two weeks. I am taking 800 mg of Advil at a time, but it doesn't seem to be helping. I am still having shooting pains all over my body.Do any of you have neck involvement with your RA? I've had neck problems for years that was resolved after neck surgery. Now, after more than a year of feeling better, my neck is acting up again. It is stiff and sore and causing daily headaches. It is much worse when it is rainy.Are there any questions that you wished you had asked your dr. but didn't?Thank you for any information.Kim

[Guest guest]

Harold & Deborah,

Thank you for taking so much time to explain things to me. I'm just frustrated and confused. I feel half way decent (only pain in hands and feet) one day then miserable, hurting everywhere, the next. Doctors seem to be throwing drugs at me, but aren't sure what is wrong. I have sypmptoms that don't seem to fit anywhere. It might sound strange, but I was so happy when my dr. called me and said that I had ra. Finally I had a diagnosis. Now, I'm just not sure.

It sounds like I may have to find a diagnosis through the treatments rather than the tests. I am amazed at how many people are out there that have experienced the same thing. I guess that's why it is called "practicing" medicine.

I really appreciate all the support and good information.

Kim

----- Original Message -----

From: Deborah Bargad

Rheumatoid Arthritis

Sent: Friday, May 30, 2008 2:29 AM

Subject: Re: Hello all

Dear Kim- I have Hyperthyroidism. It is common in people with auto immune disorders. I am taking Proplythioriacil or PTU. Go see an endocrinologist who specializes in thyroid disorders. You need answers and a prompt and efficient and reliable diagnosis as well as a plan for your pain. Hyper thyroid will give you a rapid heartbeat, Palpitations, dizziness and chest pain. I would demand to see an endocrinologist right away and also a referral to a different Rheumatologist if he isnt proactive about putting you on a biologic. Borderline symptoms dont mean you dont have RA. I had buckets of blood taken for nearly a year before my RA factor turned up positive. Its a good sign that he took more blood. He is also NOT an endocrinologist so you need to see one asap. After your new blood work comes back, see what the RD says. In the meantime, every day you go without proper treatment if you do indeed have RA or any number of connective tissue disorders is another day you lose ground. Borderline sed rate or borderline RA factors dont mean you shouldnt try aggressive treatment options. Learn what your blood tests mean. Just go to www.google.com and type in "standard blood tests for RA" should help you alot. Keep us informed and as I said before advocate for yourself. You have to do the work yourself so you can go to the doctor and not get pooh poohed by them. They will opt for the least invasive approach if you let them. If the RD had your hands or your feet right now, he would be running for a biologic. You may also have a thyroid node or Goiter which can be either hot (active or cold (inactive). I have two. One on my right side and another very large one on my left side they found by accident on a CT scan. You should have a diagnostic test of your neck. Good Luck, Deborah

On Thu, May 22, 2008 at 9:05 PM, Kim on <hockim2stny (DOT) rr.com> wrote:

Thank you all again for all the advice.

I've had a difficult couple of weeks. Friday I was in so much pain that nothing was working. I took baths, Advil, used ice, but nothing was successful. I was up all night and started having chest pain and dizziness early in the morning. When I started having diarrhea I woke my husband up and we went to the hospital. My blood pressure was extremely high, but my heart was okay except for my fast heart rate (100+) which I've had for almost a year.

The er dr. was concerned about my thyroid and added it to the bloodwork. My regular dr. called me Monday to say that I had hyopthyroidism and that I had to start medication. Wednesday I had my first appointment with the rhematologist. He said that my symptoms didn't fit hypothyroidism, but they did fit hyperthyroidism. Also, he wasn't sure about the arthritis because my bloodwork was borderline and my symptoms were pretty good that day. He ended up doing a lot of bloodwork. That night, my regular dr. called me again and said that my thyroid test came back and was at the other end of the spectrum, but on the lower end of normal. There was such a discrepancy in the two thyroid test that they didn't know what was going on. I have no clue what is going on, but I'm still in pain and am frustrated.

I have had some better days. Usually cool, dry days are good. Rainy, stormy days are very bad. The day I saw the rhematologist, I had very little pain and only mild inflamation. I think he is thinking fybromyalgia instead of ra, but I'm wondering if it could be both. My fingers, toes, and wrists are so sore.

Does anyone have any ideas on the thyroid? I looked up the symptoms and I don't fit hypothyroidism, but I was curious, so I looked up the hyperthyroid sypmtoms. I fit 90% of them. What about the ra? If my tests are borderline what does that mean?

Thanks.

Kim

----- Original Message -----

From: Harold Van Tuyl

Rheumatoid Arthritis

Sent: Monday, May 26, 2008 4:07 PM

Subject: RE: Hello all

Hi again Kim,

When I first got RA I was in the hospital with pneumonia and because of my weakened condition my RA was able to take control. My rheumatologist prescribed 40 mg Prednisone daily while waiting for the DMARDs (Disease-Modifying Anti-Rheumatic Drugs) to take effect. It took me almost a year and several increases in medication before I could finally get off Prednisone but at first it was sufficient to allow me to struggle out of bed to go to the bathroom. Prednisone is usually the fastest-acting source of relief for RA problems but it also has bad side effects so we usually try to get off it as soon as we reasonably can. Ibuprofen is the best OTC medication I know about as an anti-inflammatory and I think that is usually a major constituent of Advil but here are enough different kinds of Advil you have to look each one up to be sure. When I had pericarditis because of my RA (inflammation around my heart) my cardiologist had me use both Prednisone and Ibuprofen and told me to wean off the Prednisone first when I got better and then wean off the Ibuprofen. I guess the same advice may be best for you. You may need to increase the Prednisone to get the amount of relief you seek, but remember that there are bad side effects to almost any medication so the less the better.

Some people are affected by weather, possibly because of the low pressure that usually accompanies rain rather than the rain itself. I don't have that problem so I'm not speaking from experience. God bless.

Harold

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of Kim onSent: Wednesday, May 21, 2008 7:56 AMRheumatoid Arthritis Subject: Hello all

Hi all,I am fairly familiar with RA. My mother-in-law has had it her entire adult life and is now crippled with it. I've heard about her various treatments and seen the toll it has taken on her. Unfortunately, now I'm getting an even closer view of RA as I was finally diagnosed two weeks ago and have quickly developed symptoms. My husband's terminology is, "It hit fast and hard."I have not seen the rheumatologist yet. There is only one within 30 miles and he deals with all the autoimmune diseases in our area. Originally, my appointment was set up for July, but a cancellation will allow me to get in next Wednesday. I just have a couple of questions:How did you manage pain while waiting for the meds to kick in? My regular dr. didn't give me any pain medication. She gave me Prednisone (10 mg/day) and Ambien because I wasn't sleeping for more than an hour at a time for almost two weeks. I am taking 800 mg of Advil at a time, but it doesn't seem to be helping. I am still having shooting pains all over my body.Do any of you have neck involvement with your RA? I've had neck problems for years that was resolved after neck surgery. Now, after more than a year of feeling better, my neck is acting up again. It is stiff and sore and causing daily headaches. It is much worse when it is rainy.Are there any questions that you wished you had asked your dr. but didn't?Thank you for any information.Kim

[Guest guest]

Dear Kim- The disease itself needs to be curbed by a biologic. Remicade or Rituxan. You will be put on Methotrexate too which will slow down the RA cell division. Getting your disease under control quickly is essential to avoid damage which you already aware of. You will find chronic fatigue and Fibromyalgia are common with RA. You should advocate for yourself also. Be a proactive participant in your care. I would find the Arthritis Foundation's Local Chapter Office in your state. Go to www.arthritisfoundation.org for more information. Since it is your first visit, The standard pain meds are all you can use. Ask your doctor for Prescription strength Ibuprofen 800mg and take 2 or 3 tablets. You can also ask for a few days worth of Darvocet but it does cause nausea so be sure to take it with food. Once you stop the inflammation cascade that causes you to have pain and swelling, you will feel better. Once you get on a biologic, you should see improvement quite quickly. I know I did. I have been on remicade for many years and it still works for me. Your RA factor and Your Sed Rate are important players in your blood work. Once you start feeling better your Sed Rate should start to go down. Do not work the part of your body during a flare. Use Ice or Heat depending on what feels better to you. Good Luck. Email anytime. Yours, Deborah. RA since 1994.

On Wed, May 21, 2008 at 11:56 AM, Kim on <hockim2@...> wrote:

Hi all,

I am fairly familiar with RA. My mother-in-law has had it her entire

adult life and is now crippled with it. I've heard about her various

treatments and seen the toll it has taken on her. Unfortunately, now

I'm getting an even closer view of RA as I was finally diagnosed two

weeks ago and have quickly developed symptoms. My husband's

terminology is, " It hit fast and hard. "

I have not seen the rheumatologist yet. There is only one within 30

miles and he deals with all the autoimmune diseases in our area.

Originally, my appointment was set up for July, but a cancellation

will allow me to get in next Wednesday. I just have a couple of

questions:

How did you manage pain while waiting for the meds to kick in? My

regular dr. didn't give me any pain medication. She gave me

Prednisone (10 mg/day) and Ambien because I wasn't sleeping for more

than an hour at a time for almost two weeks. I am taking 800 mg of

Advil at a time, but it doesn't seem to be helping. I am still

having shooting pains all over my body.

Do any of you have neck involvement with your RA? I've had neck

problems for years that was resolved after neck surgery. Now, after

more than a year of feeling better, my neck is acting up again. It

is stiff and sore and causing daily headaches. It is much worse when

it is rainy.

Are there any questions that you wished you had asked your dr. but

didn't?

Thank you for any information.

Kim