Re: New to group. Very scared. Have ?'s. Diagnosed with RA back in May.

[Guest guest]

Tara, welcome to the group, ,my name is Diane and I'm 32. I also was

diagnosed in May, but luckily mine was caught early. What meds are you

taking are they helping. There are many wonderful more experienced

folks that will provide you with great info and advice. I hope you

find the support you need here.

Diane>

[Guest guest]

Good Grief, Tara! I am so sorry that the idiot doctors you were going

to early on did not recognize that you could have had Seronegative RA

and gotten you started on meds sooner. I know that RA can attack the

lungs, but what the treatment plan or the prognosis could be, I don't

know. I just wanted you to know that you are in my prayers. Please

keep us posted on what the Rheumy says. I pray that they are able to

get this all under control to where you are feeling better soon.

Doreen

>

> Hi Everyone,

>

> I am new to this group. Just found it tonight. So glad I found you

> all. Right now, I am sitting here very scared & have ?'s. Not sure

> of where to begin. I will try to make my history as short as I can.

> Please forgive me if it gets long. My name is Tara. I am 36 years

> old. Married to my wonderful husband, Allan (even though I know this

> has been very hard on him). Currently living in northern Virginia.

> Unable to have children due to having severe endometriosis & history

> of pituitary tumor (have had 3 surgeries to remove the benign mass to

> include a craniotomy 3 years ago this month).Have had issues with

> Cushings Disease in the past. Because of it, I have to be very

> carefull when taking steriods. I have been having joint problems for

> as long as I can remember. Diagnosed with Chondromalicia patella in

> 1988 while in high school. Have had 3 surgeries on my left knee with

> the last one being in June of this year for a torn meniscus..again.

> Have had shoulder surgery done (bone spur). Wrist surgery

> (DeQuarvains was the diagnosis). Severe OA of left knee now. Mild OA

> in other knee. Already have some bare spots on bone in left knee

> joint. Dr thinks I am going to need a knee replacement in about 3-5

> years. Maybe sooner. Osteopenia/Osteoporosis (it goes back & forth)

> Severe degnerative disc disease in my spine to the point where all of

> my discs are bad except for 2-3. Because of so many vertebrae & discs

> being involved, not a candidate for surgery. On pain management

> contract with a pain management specialist. Have to take heavy duty

> pain meds in order to be able to just function (which I HATE having

> to take) & still in a lot of pain. Always wondered if there was a

> connection with all of my joints being bad. In 1996, while we were

> stationed in GA with the military (my husband is former AD Navy. He

> is now in the Naval reserves), I had a dr who started to suspect that

> I either had RA or Lupus. Thats when I first started to get tested.

> RA factor was always negative. Been getting tested every year since

> then & its still comes up negative. Been dealing with severe iron

> deficiency anemia ever since I was little. Had a hysterectomy to try

> to cure it & it didn't. Noone could ever figure out what was causing

> it. Hematologist asked about RA, but because the RA factor test was

> negative, RA was ruled out. Have had to have 2 iron infusions & now

> facing another one. I have to get one about every 2-3 years. In

> December of last year, I started having severe pain, swelling,

> stiffness & redness in both of my knees especially when sitting &

> standing & especially in the morning. It then started to attack my

> ankles (even though been having severe swelling off & on of ankles

> for the last several years..noone could figure out what was causing

> it till this year). The pain in my back, knees & ankles has been so

> severe that I have not been able to sleep in my own bed in about a

> year now because its on the 2nd floor. Have to avoid steps as much as

> possible. Only go upstairs to shower & even then I need hubby's help.

> Even painful to sleep on bed, even though we have one of those good

> mattresses for the back. Going to get a better one this coming year

> once we save up the money for it. It then spread to my hands/fingers

> to the point where its hard for me to type. Its especially really bad

> in the morning. Severe pain, swelling, stiffness & redness to the

> point where it would take me hours to get up & get moving. I kept

> trying to ignore it because I have had so many things wrong with me

> medically over the years that I was afraid that it was nothing & that

> I would be told it was all in my head, till Easter Sunday when we

> went to my mom's for the weekend. Even tried to hide it from my

> husband because I know he gets tired of all of my medical stuff even

> though he has/is absolutely very supportive & loving. There are times

> where it does get to him though. Anyway, Hubby & I were able to sleep

> in the same bed since my mom lives in a one story house. Woke up

> Easter morning with my fingers all curled inward. No more hiding it

> from him. I never hide things from my husband either. Just that this

> time, I figured the joint issues were nothing. He asked how long that

> has been going on & at that point, fingers curling inward had only

> been going on for about a week. He immediately suspected RA. He got

> me in to see my Primary care doctor (PCM) the very next day. PCM

> suspected it right away when he saw how swollen, red & painfull all

> of my joints were. He did the RA factor bloodwork & immediately

> referred me to a Rheumatologist because thats when we found out that

> 20-30% of people have false negatives. Saw Rheumatogolist on May

> 14th, who also told me about how a lot of people have false negatives

> & after looking over bloodwork from the last several years, was

> shocked that it wasn't caught earlier because even though my RA

> factor was negative, the rest of my bloodwork showed that I had it

> (white blood cells were off, red bloodcells were microcytic &

> something else with them, the anemia, inflammation factor was high,

> etc). She diagnosed me as having moderate to severe RA along with

> severe Fibromyalgia. After doing a chest x-ray, TB test, & some other

> bloodwork, she put me on Enbrel. After 3 months, did not respond to

> treatment. Had to do a few rounds of steriods to give me some relief.

> Steriods helped greatly!!! but as soon as they wore off, RA flared

> right back up. Because of history of cushings disease from pit tumor,

> cannot do steriods that often except when absolutely necessary. RA

> has been continuing to get much worse. Been also dealing with a

> severe sprain of my right ankle. First sprained it in Aug 2005 & its

> been getting worse ever since. Been to several ortho drs who would

> just do the air cast thing. Had a horrible fall back in Sept of this

> year when ankle rolled out from under me as I was stepping off of a

> curb. In Sept, Rheumatologist switched me to Humira. After about 4

> weeks, I talked to her about putting me on methotrexate in addition

> to the Humira since the RA keeps getting worse. Had to come off of

> them temporarily the first week in Nov due to finding out that I was

> going to have right ankle surgery. I got referred to a podiatrist in

> October for an ingrown toenail, in which he removed. At my post-op, I

> mentioned to him the ankle issues I have been having with my right

> ankle. After doing some x-rays & an exam, he immediately scheduled

> surgery for Nov 18th. Had to come off of RA meds 1 week prior to

> surgery. Opened me up & things were worse than he/we expected. As

> soon as he made the incision, I had a TON of fluid start pouring out

> from the ankle joint & there was a lot of inflammtion. Podiatrist

> said this was from the RA. Definitely saw severe RA within the joint.

> Also ligament was not only torn, but it was severely torn &

> shredded. This dr has a lot of experience dealing with patients that

> have RA. Anyway, I am now recovering from the surgery. Not allowed

> to put any weight on surgery foot. RA has been absolutely HORRIBLE. I

> am wheelchair bound right now because 5 days after surgery, my left

> ankle just couldn't take all of the weight bearing on it anymore & as

> I was trying to step up on to a platform to tackle the stairs to get

> back in to my house, I lost my balance & went flying. Next morning,

> woke up to severe pain in both & not able to bear any weight

> on " good " ankle. I now have a severely sprained left ankle with a

> splint on it now & a cast on the right ankle. Dr doesn't want me to

> put any weight on surgery foot & because of the RA & the severe

> sprain of left foot, wants me keep off of left ankle now to & to use

> the wheelchair as much as possible. Cast comes off tomorrow. YAY!!!!

> Then I am going to be in a boot removeable air cast thing that comes

> up to my knee for several weeks & will be able to hopefully start to

> gradually put weight on it. Also found out that I might have to have

> the same surgery done on left ankle, but cannot have it done till

> right ankle is completely healed up. Hoping & praying that I will not

> need surgery on that ankle because I am in a horrible amount of pain

> from the RA. All of my joints are severely swollen, red, & painful.

> Now this is where I am getting very scared. About a month ago, I

> started having problems with breathing. I am now only able to take 2-

> 3 small breaths & then have to take a gasping long deep breath. Its

> like I cannot get a good enough breath to fill my lungs. Was trying

> to ignore it until last night. Also been EXTREMELY exhausted & have

> started having bad headaches. Lose my breath very easily now & get

> worn out very easily. Been doing a LOT of sleeping. Way more than

> usual.Going to the dr even causes me to sleep several days. Have no

> energy at all. Hubby & I originally thought maybe it was because I

> was just exhausted, but even when I slept, still was having problems

> with breathing. Started having heart palpitations the last few days &

> then last night, I started feeling congested. Thats what finally

> scared me in to calling the dr. Originally I was going to make an

> appt with my pcm, but this morning, I picked up a book on RA that I

> had just checked out from the library. I read this morning that it

> can attack the lungs. Didn't know that. If I had known that, I would

> have gotten seen sooner. So I called my Rheumatologist. Her nurse

> just called me back about an hour ago. First of all, I got a talking

> to about not getting seen sooner. She then said " you know RA can

> attack the lungs & Dr. is very concerned & feels that this could be

> what is going on with you " & wants to see me tomorrow morning. I then

> had to promise her that if I start having problems with not being

> able to breath, for me to go to the ER ASAP. I told her it almost

> feels like I am drowning. She then said it definitely sounds like

> you have fluid in your lungs & that the RA is attacking your lungs.

> She said it could be a reaction to the methotrexate, but since I just

> started taking it & she started me on a very low dose & the fact that

> I only took 2 doses before having to come off of it for the surgery &

> my breathing symptoms continued to get worse along with the fact that

> the RA has been getting so severe that she ended up putting me back

> on the RA meds last week. A little sooner than originally planned. I

> also now have horrible psourisis that has also flared up & I am

> getting some of those nodules under the skin.

> Sorry for this turning into a book, but does it sound like I have RA

> of the lungs? I am so scared right now because from what I have

> researched on it here on the internet that if it is RA of the lungs,

> its fatal right? If she does confirm its in the lungs tomorrow, does

> anyone know what the next step might be? Is there a chance that I

> might get put in the hospital? To add to all of this, hubby came down

> with upper respiratory infection today & now it looks like I am

> coming down with that too. Double whammy.

> Any help would be greatly appreciated & I am sooo sorry for this

> being a book. Just very confused & scared right now. Please be honest

> with me about what could be going on. I am the type of person that I

> do better if I know the full extent of what it could be even if its

> not good news at all.

> So glad I found you all & thank you for listening.

>

> Tara S.

>

[Guest guest]

Tara and group;

Tara welcome to our humble group. I believe you have come to the

right place. As you read post you will learn a lot about our

diseasess and how we deal with them.

For now relax. It's ok we understand. I read your post and my heart

goes out to you hun. I think writting this you may have taken a ton

of stuff all your back. It's good to get it out. I hope you enjoy

the group as much as I do. God bless and take care.

gentle hugs

Clora

***************************************************************

> Hi Everyone,

>

> I am new to this group. Just found it tonight. So glad I found you

> all. Right now, I am sitting here very scared & have ?'s. Not

sure

> of where to begin. I will try to make my history as short as I can.

> Please forgive me if it gets long. My name is Tara. I am 36 years

> old. Married to my wonderful husband, Allan (even though I know

this

> has been very hard on him). Currently living in northern Virginia.

> Unable to have children due to having severe endometriosis &

history

> of pituitary tumor (have had 3 surgeries to remove the benign mass

to

> include a craniotomy 3 years ago this month).Have had issues with

> Cushings Disease in the past. Because of it, I have to be very

> carefull when taking steriods. I have been having joint problems

for

> as long as I can remember. Diagnosed with Chondromalicia patella in

> 1988 while in high school. Have had 3 surgeries on my left knee

with

> the last one being in June of this year for a torn meniscus..again.

> Have had shoulder surgery done (bone spur). Wrist surgery

> (DeQuarvains was the diagnosis). Severe OA of left knee now. Mild

OA

> in other knee. Already have some bare spots on bone in left knee

> joint. Dr thinks I am going to need a knee replacement in about 3-5

> years. Maybe sooner. Osteopenia/Osteoporosis (it goes back & forth)

> Severe degnerative disc disease in my spine to the point where all

of

> my discs are bad except for 2-3. Because of so many vertebrae &

discs

> being involved, not a candidate for surgery. On pain management

> contract with a pain management specialist. Have to take heavy duty

> pain meds in order to be able to just function (which I HATE having

> to take) & still in a lot of pain. Always wondered if there was a

> connection with all of my joints being bad. In 1996, while we were

> stationed in GA with the military (my husband is former AD Navy. He

> is now in the Naval reserves), I had a dr who started to suspect

that

> I either had RA or Lupus. Thats when I first started to get tested.

> RA factor was always negative. Been getting tested every year

since

> then & its still comes up negative. Been dealing with severe iron

> deficiency anemia ever since I was little. Had a hysterectomy to

try

> to cure it & it didn't. Noone could ever figure out what was

causing

> it. Hematologist asked about RA, but because the RA factor test was

> negative, RA was ruled out. Have had to have 2 iron infusions & now

> facing another one. I have to get one about every 2-3 years. In

> December of last year, I started having severe pain, swelling,

> stiffness & redness in both of my knees especially when sitting &

> standing & especially in the morning. It then started to attack my

> ankles (even though been having severe swelling off & on of ankles

> for the last several years..noone could figure out what was causing

> it till this year). The pain in my back, knees & ankles has been so

> severe that I have not been able to sleep in my own bed in about a

> year now because its on the 2nd floor. Have to avoid steps as much

as

> possible. Only go upstairs to shower & even then I need hubby's

help.

> Even painful to sleep on bed, even though we have one of those good

> mattresses for the back. Going to get a better one this coming year

> once we save up the money for it. It then spread to my

hands/fingers

> to the point where its hard for me to type. Its especially really

bad

> in the morning. Severe pain, swelling, stiffness & redness to the

> point where it would take me hours to get up & get moving. I kept

> trying to ignore it because I have had so many things wrong with me

> medically over the years that I was afraid that it was nothing &

that

> I would be told it was all in my head, till Easter Sunday when we

> went to my mom's for the weekend. Even tried to hide it from my

> husband because I know he gets tired of all of my medical stuff

even

> though he has/is absolutely very supportive & loving. There are

times

> where it does get to him though. Anyway, Hubby & I were able to

sleep

> in the same bed since my mom lives in a one story house. Woke up

> Easter morning with my fingers all curled inward. No more hiding it

> from him. I never hide things from my husband either. Just that

this

> time, I figured the joint issues were nothing. He asked how long

that

> has been going on & at that point, fingers curling inward had only

> been going on for about a week. He immediately suspected RA. He

got

> me in to see my Primary care doctor (PCM) the very next day. PCM

> suspected it right away when he saw how swollen, red & painfull all

> of my joints were. He did the RA factor bloodwork & immediately

> referred me to a Rheumatologist because thats when we found out

that

> 20-30% of people have false negatives. Saw Rheumatogolist on May

> 14th, who also told me about how a lot of people have false

negatives

> & after looking over bloodwork from the last several years, was

> shocked that it wasn't caught earlier because even though my RA

> factor was negative, the rest of my bloodwork showed that I had it

> (white blood cells were off, red bloodcells were microcytic &

> something else with them, the anemia, inflammation factor was high,

> etc). She diagnosed me as having moderate to severe RA along with

> severe Fibromyalgia. After doing a chest x-ray, TB test, & some

other

> bloodwork, she put me on Enbrel. After 3 months, did not respond to

> treatment. Had to do a few rounds of steriods to give me some

relief.

> Steriods helped greatly!!! but as soon as they wore off, RA flared

> right back up. Because of history of cushings disease from pit

tumor,

> cannot do steriods that often except when absolutely necessary. RA

> has been continuing to get much worse. Been also dealing with a

> severe sprain of my right ankle. First sprained it in Aug 2005 &

its

> been getting worse ever since. Been to several ortho drs who would

> just do the air cast thing. Had a horrible fall back in Sept of

this

> year when ankle rolled out from under me as I was stepping off of a

> curb. In Sept, Rheumatologist switched me to Humira. After about 4

> weeks, I talked to her about putting me on methotrexate in addition

> to the Humira since the RA keeps getting worse. Had to come off of

> them temporarily the first week in Nov due to finding out that I

was

> going to have right ankle surgery. I got referred to a podiatrist

in

> October for an ingrown toenail, in which he removed. At my post-op,

I

> mentioned to him the ankle issues I have been having with my right

> ankle. After doing some x-rays & an exam, he immediately scheduled

> surgery for Nov 18th. Had to come off of RA meds 1 week prior to

> surgery. Opened me up & things were worse than he/we expected. As

> soon as he made the incision, I had a TON of fluid start pouring

out

> from the ankle joint & there was a lot of inflammtion. Podiatrist

> said this was from the RA. Definitely saw severe RA within the

joint.

> Also ligament was not only torn, but it was severely torn &

> shredded. This dr has a lot of experience dealing with patients

that

> have RA. Anyway, I am now recovering from the surgery. Not allowed

> to put any weight on surgery foot. RA has been absolutely HORRIBLE.

I

> am wheelchair bound right now because 5 days after surgery, my left

> ankle just couldn't take all of the weight bearing on it anymore &

as

> I was trying to step up on to a platform to tackle the stairs to

get

> back in to my house, I lost my balance & went flying. Next morning,

> woke up to severe pain in both & not able to bear any weight

> on " good " ankle. I now have a severely sprained left ankle with a

> splint on it now & a cast on the right ankle. Dr doesn't want me to

> put any weight on surgery foot & because of the RA & the severe

> sprain of left foot, wants me keep off of left ankle now to & to

use

> the wheelchair as much as possible. Cast comes off tomorrow.

YAY!!!!

> Then I am going to be in a boot removeable air cast thing that

comes

> up to my knee for several weeks & will be able to hopefully start

to

> gradually put weight on it. Also found out that I might have to

have

> the same surgery done on left ankle, but cannot have it done till

> right ankle is completely healed up. Hoping & praying that I will

not

> need surgery on that ankle because I am in a horrible amount of

pain

> from the RA. All of my joints are severely swollen, red, & painful.

> Now this is where I am getting very scared. About a month ago, I

> started having problems with breathing. I am now only able to take

2-

> 3 small breaths & then have to take a gasping long deep breath. Its

> like I cannot get a good enough breath to fill my lungs. Was trying

> to ignore it until last night. Also been EXTREMELY exhausted & have

> started having bad headaches. Lose my breath very easily now & get

> worn out very easily. Been doing a LOT of sleeping. Way more than

> usual.Going to the dr even causes me to sleep several days. Have no

> energy at all. Hubby & I originally thought maybe it was because I

> was just exhausted, but even when I slept, still was having

problems

> with breathing. Started having heart palpitations the last few days

&

> then last night, I started feeling congested. Thats what finally

> scared me in to calling the dr. Originally I was going to make an

> appt with my pcm, but this morning, I picked up a book on RA that I

> had just checked out from the library. I read this morning that it

> can attack the lungs. Didn't know that. If I had known that, I

would

> have gotten seen sooner. So I called my Rheumatologist. Her nurse

> just called me back about an hour ago. First of all, I got a

talking

> to about not getting seen sooner. She then said " you know RA can

> attack the lungs & Dr. is very concerned & feels that this could be

> what is going on with you " & wants to see me tomorrow morning. I

then

> had to promise her that if I start having problems with not being

> able to breath, for me to go to the ER ASAP. I told her it almost

> feels like I am drowning. She then said it definitely sounds like

> you have fluid in your lungs & that the RA is attacking your

lungs.

> She said it could be a reaction to the methotrexate, but since I

just

> started taking it & she started me on a very low dose & the fact

that

> I only took 2 doses before having to come off of it for the surgery

&

> my breathing symptoms continued to get worse along with the fact

that

> the RA has been getting so severe that she ended up putting me back

> on the RA meds last week. A little sooner than originally planned.

I

> also now have horrible psourisis that has also flared up & I am

> getting some of those nodules under the skin.

> Sorry for this turning into a book, but does it sound like I have

RA

> of the lungs? I am so scared right now because from what I have

> researched on it here on the internet that if it is RA of the

lungs,

> its fatal right? If she does confirm its in the lungs tomorrow,

does

> anyone know what the next step might be? Is there a chance that I

> might get put in the hospital? To add to all of this, hubby came

down

> with upper respiratory infection today & now it looks like I am

> coming down with that too. Double whammy.

> Any help would be greatly appreciated & I am sooo sorry for this

> being a book. Just very confused & scared right now. Please be

honest

> with me about what could be going on. I am the type of person that

I

> do better if I know the full extent of what it could be even if its

> not good news at all.

> So glad I found you all & thank you for listening.

>

> Tara S.

>

[Guest guest]

Hi Tara

So sorry to hear you have this hideous disease on top over everything

else you have to manage. I am 37 and diagnosed a year ago. I was an

absolute mess until I found this Group. I am sure you will find them

to be incredibly supportive and will answer all your ?'s.

Cheryl

>

> Hi Everyone,

>

> I am new to this group. Just found it tonight. So glad I found you

> all. Right now, I am sitting here very scared & have ?'s. Not

sure

> of where to begin. I will try to make my history as short as I can.

> Please forgive me if it gets long. My name is Tara. I am 36 years

> old. Married to my wonderful husband, Allan (even though I know

this

> has been very hard on him). Currently living in northern Virginia.

> Unable to have children due to having severe endometriosis &

history

> of pituitary tumor (have had 3 surgeries to remove the benign mass

to

> include a craniotomy 3 years ago this month).Have had issues with

> Cushings Disease in the past. Because of it, I have to be very

> carefull when taking steriods. I have been having joint problems

for

> as long as I can remember. Diagnosed with Chondromalicia patella in

> 1988 while in high school. Have had 3 surgeries on my left knee

with

> the last one being in June of this year for a torn meniscus..again.

> Have had shoulder surgery done (bone spur). Wrist surgery

> (DeQuarvains was the diagnosis). Severe OA of left knee now. Mild

OA

> in other knee. Already have some bare spots on bone in left knee

> joint. Dr thinks I am going to need a knee replacement in about 3-5

> years. Maybe sooner. Osteopenia/Osteoporosis (it goes back & forth)

> Severe degnerative disc disease in my spine to the point where all

of

> my discs are bad except for 2-3. Because of so many vertebrae &

discs

> being involved, not a candidate for surgery. On pain management

> contract with a pain management specialist. Have to take heavy duty

> pain meds in order to be able to just function (which I HATE having

> to take) & still in a lot of pain. Always wondered if there was a

> connection with all of my joints being bad. In 1996, while we were

> stationed in GA with the military (my husband is former AD Navy. He

> is now in the Naval reserves), I had a dr who started to suspect

that

> I either had RA or Lupus. Thats when I first started to get tested.

> RA factor was always negative. Been getting tested every year

since

> then & its still comes up negative. Been dealing with severe iron

> deficiency anemia ever since I was little. Had a hysterectomy to

try

> to cure it & it didn't. Noone could ever figure out what was

causing

> it. Hematologist asked about RA, but because the RA factor test was

> negative, RA was ruled out. Have had to have 2 iron infusions & now

> facing another one. I have to get one about every 2-3 years. In

> December of last year, I started having severe pain, swelling,

> stiffness & redness in both of my knees especially when sitting &

> standing & especially in the morning. It then started to attack my

> ankles (even though been having severe swelling off & on of ankles

> for the last several years..noone could figure out what was causing

> it till this year). The pain in my back, knees & ankles has been so

> severe that I have not been able to sleep in my own bed in about a

> year now because its on the 2nd floor. Have to avoid steps as much

as

> possible. Only go upstairs to shower & even then I need hubby's

help.

> Even painful to sleep on bed, even though we have one of those good

> mattresses for the back. Going to get a better one this coming year

> once we save up the money for it. It then spread to my

hands/fingers

> to the point where its hard for me to type. Its especially really

bad

> in the morning. Severe pain, swelling, stiffness & redness to the

> point where it would take me hours to get up & get moving. I kept

> trying to ignore it because I have had so many things wrong with me

> medically over the years that I was afraid that it was nothing &

that

> I would be told it was all in my head, till Easter Sunday when we

> went to my mom's for the weekend. Even tried to hide it from my

> husband because I know he gets tired of all of my medical stuff

even

> though he has/is absolutely very supportive & loving. There are

times

> where it does get to him though. Anyway, Hubby & I were able to

sleep

> in the same bed since my mom lives in a one story house. Woke up

> Easter morning with my fingers all curled inward. No more hiding it

> from him. I never hide things from my husband either. Just that

this

> time, I figured the joint issues were nothing. He asked how long

that

> has been going on & at that point, fingers curling inward had only

> been going on for about a week. He immediately suspected RA. He

got

> me in to see my Primary care doctor (PCM) the very next day. PCM

> suspected it right away when he saw how swollen, red & painfull all

> of my joints were. He did the RA factor bloodwork & immediately

> referred me to a Rheumatologist because thats when we found out

that

> 20-30% of people have false negatives. Saw Rheumatogolist on May

> 14th, who also told me about how a lot of people have false

negatives

> & after looking over bloodwork from the last several years, was

> shocked that it wasn't caught earlier because even though my RA

> factor was negative, the rest of my bloodwork showed that I had it

> (white blood cells were off, red bloodcells were microcytic &

> something else with them, the anemia, inflammation factor was high,

> etc). She diagnosed me as having moderate to severe RA along with

> severe Fibromyalgia. After doing a chest x-ray, TB test, & some

other

> bloodwork, she put me on Enbrel. After 3 months, did not respond to

> treatment. Had to do a few rounds of steriods to give me some

relief.

> Steriods helped greatly!!! but as soon as they wore off, RA flared

> right back up. Because of history of cushings disease from pit

tumor,

> cannot do steriods that often except when absolutely necessary. RA

> has been continuing to get much worse. Been also dealing with a

> severe sprain of my right ankle. First sprained it in Aug 2005 &

its

> been getting worse ever since. Been to several ortho drs who would

> just do the air cast thing. Had a horrible fall back in Sept of

this

> year when ankle rolled out from under me as I was stepping off of a

> curb. In Sept, Rheumatologist switched me to Humira. After about 4

> weeks, I talked to her about putting me on methotrexate in addition

> to the Humira since the RA keeps getting worse. Had to come off of

> them temporarily the first week in Nov due to finding out that I

was

> going to have right ankle surgery. I got referred to a podiatrist

in

> October for an ingrown toenail, in which he removed. At my post-op,

I

> mentioned to him the ankle issues I have been having with my right

> ankle. After doing some x-rays & an exam, he immediately scheduled

> surgery for Nov 18th. Had to come off of RA meds 1 week prior to

> surgery. Opened me up & things were worse than he/we expected. As

> soon as he made the incision, I had a TON of fluid start pouring

out

> from the ankle joint & there was a lot of inflammtion. Podiatrist

> said this was from the RA. Definitely saw severe RA within the

joint.

> Also ligament was not only torn, but it was severely torn &

> shredded. This dr has a lot of experience dealing with patients

that

> have RA. Anyway, I am now recovering from the surgery. Not allowed

> to put any weight on surgery foot. RA has been absolutely HORRIBLE.

I

> am wheelchair bound right now because 5 days after surgery, my left

> ankle just couldn't take all of the weight bearing on it anymore &

as

> I was trying to step up on to a platform to tackle the stairs to

get

> back in to my house, I lost my balance & went flying. Next morning,

> woke up to severe pain in both & not able to bear any weight

> on " good " ankle. I now have a severely sprained left ankle with a

> splint on it now & a cast on the right ankle. Dr doesn't want me to

> put any weight on surgery foot & because of the RA & the severe

> sprain of left foot, wants me keep off of left ankle now to & to

use

> the wheelchair as much as possible. Cast comes off tomorrow.

YAY!!!!

> Then I am going to be in a boot removeable air cast thing that

comes

> up to my knee for several weeks & will be able to hopefully start

to

> gradually put weight on it. Also found out that I might have to

have

> the same surgery done on left ankle, but cannot have it done till

> right ankle is completely healed up. Hoping & praying that I will

not

> need surgery on that ankle because I am in a horrible amount of

pain

> from the RA. All of my joints are severely swollen, red, & painful.

> Now this is where I am getting very scared. About a month ago, I

> started having problems with breathing. I am now only able to take

2-

> 3 small breaths & then have to take a gasping long deep breath. Its

> like I cannot get a good enough breath to fill my lungs. Was trying

> to ignore it until last night. Also been EXTREMELY exhausted & have

> started having bad headaches. Lose my breath very easily now & get

> worn out very easily. Been doing a LOT of sleeping. Way more than

> usual.Going to the dr even causes me to sleep several days. Have no

> energy at all. Hubby & I originally thought maybe it was because I

> was just exhausted, but even when I slept, still was having

problems

> with breathing. Started having heart palpitations the last few days

&

> then last night, I started feeling congested. Thats what finally

> scared me in to calling the dr. Originally I was going to make an

> appt with my pcm, but this morning, I picked up a book on RA that I

> had just checked out from the library. I read this morning that it

> can attack the lungs. Didn't know that. If I had known that, I

would

> have gotten seen sooner. So I called my Rheumatologist. Her nurse

> just called me back about an hour ago. First of all, I got a

talking

> to about not getting seen sooner. She then said " you know RA can

> attack the lungs & Dr. is very concerned & feels that this could be

> what is going on with you " & wants to see me tomorrow morning. I

then

> had to promise her that if I start having problems with not being

> able to breath, for me to go to the ER ASAP. I told her it almost

> feels like I am drowning. She then said it definitely sounds like

> you have fluid in your lungs & that the RA is attacking your

lungs.

> She said it could be a reaction to the methotrexate, but since I

just

> started taking it & she started me on a very low dose & the fact

that

> I only took 2 doses before having to come off of it for the surgery

&

> my breathing symptoms continued to get worse along with the fact

that

> the RA has been getting so severe that she ended up putting me back

> on the RA meds last week. A little sooner than originally planned.

I

> also now have horrible psourisis that has also flared up & I am

> getting some of those nodules under the skin.

> Sorry for this turning into a book, but does it sound like I have

RA

> of the lungs? I am so scared right now because from what I have

> researched on it here on the internet that if it is RA of the

lungs,

> its fatal right? If she does confirm its in the lungs tomorrow,

does

> anyone know what the next step might be? Is there a chance that I

> might get put in the hospital? To add to all of this, hubby came

down

> with upper respiratory infection today & now it looks like I am

> coming down with that too. Double whammy.

> Any help would be greatly appreciated & I am sooo sorry for this

> being a book. Just very confused & scared right now. Please be

honest

> with me about what could be going on. I am the type of person that

I

> do better if I know the full extent of what it could be even if its

> not good news at all.

> So glad I found you all & thank you for listening.

>

> Tara S.

>

[Guest guest]

Tara

Welcome to this group. I hate that you have to be here due to the disease.

I can tell you that this is the group to e in for much needed information.

is the absolute guru when it comes to articles or to point you in the

right direction for information. I wish I could tell you more about RA in

the lungs but I haven't had any experiences with it. I also have

sero-negative RA and it seems that there are more and more cases turning

up.It sounds like you have had to deal with an enormous amount of sickness

in your short life. I am sure you will find the right answers and just know

that I will keep you and your family in my prayers.

Heidibug

On Tue, Dec 9, 2008 at 7:59 PM, Tara <tswilley96@...> wrote:

> Hi Everyone,

>

> I am new to this group. Just found it tonight. So glad I found you

> all. Right now, I am sitting here very scared & have ?'s. Not sure

> of where to begin. I will try to make my history as short as I can.

> Please forgive me if it gets long. My name is Tara. I am 36 years

> old. Married to my wonderful husband, Allan (even though I know this

> has been very hard on him). Currently living in northern Virginia.

> Unable to have children due to having severe endometriosis & history

> of pituitary tumor (have had 3 surgeries to remove the benign mass to

> include a craniotomy 3 years ago this month).Have had issues with

> Cushings Disease in the past. Because of it, I have to be very

> carefull when taking steriods. I have been having joint problems for

> as long as I can remember. Diagnosed with Chondromalicia patella in

> 1988 while in high school. Have had 3 surgeries on my left knee with

> the last one being in June of this year for a torn meniscus..again.

> Have had shoulder surgery done (bone spur). Wrist surgery

> (DeQuarvains was the diagnosis). Severe OA of left knee now. Mild OA

> in other knee. Already have some bare spots on bone in left knee

> joint. Dr thinks I am going to need a knee replacement in about 3-5

> years. Maybe sooner. Osteopenia/Osteoporosis (it goes back & forth)

> Severe degnerative disc disease in my spine to the point where all of

> my discs are bad except for 2-3. Because of so many vertebrae & discs

> being involved, not a candidate for surgery. On pain management

> contract with a pain management specialist. Have to take heavy duty

> pain meds in order to be able to just function (which I HATE having

> to take) & still in a lot of pain. Always wondered if there was a

> connection with all of my joints being bad. In 1996, while we were

> stationed in GA with the military (my husband is former AD Navy. He

> is now in the Naval reserves), I had a dr who started to suspect that

> I either had RA or Lupus. Thats when I first started to get tested.

> RA factor was always negative. Been getting tested every year since

> then & its still comes up negative. Been dealing with severe iron

> deficiency anemia ever since I was little. Had a hysterectomy to try

> to cure it & it didn't. Noone could ever figure out what was causing

> it. Hematologist asked about RA, but because the RA factor test was

> negative, RA was ruled out. Have had to have 2 iron infusions & now

> facing another one. I have to get one about every 2-3 years. In

> December of last year, I started having severe pain, swelling,

> stiffness & redness in both of my knees especially when sitting &

> standing & especially in the morning. It then started to attack my

> ankles (even though been having severe swelling off & on of ankles

> for the last several years..noone could figure out what was causing

> it till this year). The pain in my back, knees & ankles has been so

> severe that I have not been able to sleep in my own bed in about a

> year now because its on the 2nd floor. Have to avoid steps as much as

> possible. Only go upstairs to shower & even then I need hubby's help.

> Even painful to sleep on bed, even though we have one of those good

> mattresses for the back. Going to get a better one this coming year

> once we save up the money for it. It then spread to my hands/fingers

> to the point where its hard for me to type. Its especially really bad

> in the morning. Severe pain, swelling, stiffness & redness to the

> point where it would take me hours to get up & get moving. I kept

> trying to ignore it because I have had so many things wrong with me

> medically over the years that I was afraid that it was nothing & that

> I would be told it was all in my head, till Easter Sunday when we

> went to my mom's for the weekend. Even tried to hide it from my

> husband because I know he gets tired of all of my medical stuff even

> though he has/is absolutely very supportive & loving. There are times

> where it does get to him though. Anyway, Hubby & I were able to sleep

> in the same bed since my mom lives in a one story house. Woke up

> Easter morning with my fingers all curled inward. No more hiding it

> from him. I never hide things from my husband either. Just that this

> time, I figured the joint issues were nothing. He asked how long that

> has been going on & at that point, fingers curling inward had only

> been going on for about a week. He immediately suspected RA. He got

> me in to see my Primary care doctor (PCM) the very next day. PCM

> suspected it right away when he saw how swollen, red & painfull all

> of my joints were. He did the RA factor bloodwork & immediately

> referred me to a Rheumatologist because thats when we found out that

> 20-30% of people have false negatives. Saw Rheumatogolist on May

> 14th, who also told me about how a lot of people have false negatives

> & after looking over bloodwork from the last several years, was

> shocked that it wasn't caught earlier because even though my RA

> factor was negative, the rest of my bloodwork showed that I had it

> (white blood cells were off, red bloodcells were microcytic &

> something else with them, the anemia, inflammation factor was high,

> etc). She diagnosed me as having moderate to severe RA along with

> severe Fibromyalgia. After doing a chest x-ray, TB test, & some other

> bloodwork, she put me on Enbrel. After 3 months, did not respond to

> treatment. Had to do a few rounds of steriods to give me some relief.

> Steriods helped greatly!!! but as soon as they wore off, RA flared

> right back up. Because of history of cushings disease from pit tumor,

> cannot do steriods that often except when absolutely necessary. RA

> has been continuing to get much worse. Been also dealing with a

> severe sprain of my right ankle. First sprained it in Aug 2005 & its

> been getting worse ever since. Been to several ortho drs who would

> just do the air cast thing. Had a horrible fall back in Sept of this

> year when ankle rolled out from under me as I was stepping off of a

> curb. In Sept, Rheumatologist switched me to Humira. After about 4

> weeks, I talked to her about putting me on methotrexate in addition

> to the Humira since the RA keeps getting worse. Had to come off of

> them temporarily the first week in Nov due to finding out that I was

> going to have right ankle surgery. I got referred to a podiatrist in

> October for an ingrown toenail, in which he removed. At my post-op, I

> mentioned to him the ankle issues I have been having with my right

> ankle. After doing some x-rays & an exam, he immediately scheduled

> surgery for Nov 18th. Had to come off of RA meds 1 week prior to

> surgery. Opened me up & things were worse than he/we expected. As

> soon as he made the incision, I had a TON of fluid start pouring out

> from the ankle joint & there was a lot of inflammtion. Podiatrist

> said this was from the RA. Definitely saw severe RA within the joint.

> Also ligament was not only torn, but it was severely torn &

> shredded. This dr has a lot of experience dealing with patients that

> have RA. Anyway, I am now recovering from the surgery. Not allowed

> to put any weight on surgery foot. RA has been absolutely HORRIBLE. I

> am wheelchair bound right now because 5 days after surgery, my left

> ankle just couldn't take all of the weight bearing on it anymore & as

> I was trying to step up on to a platform to tackle the stairs to get

> back in to my house, I lost my balance & went flying. Next morning,

> woke up to severe pain in both & not able to bear any weight

> on " good " ankle. I now have a severely sprained left ankle with a

> splint on it now & a cast on the right ankle. Dr doesn't want me to

> put any weight on surgery foot & because of the RA & the severe

> sprain of left foot, wants me keep off of left ankle now to & to use

> the wheelchair as much as possible. Cast comes off tomorrow. YAY!!!!

> Then I am going to be in a boot removeable air cast thing that comes

> up to my knee for several weeks & will be able to hopefully start to

> gradually put weight on it. Also found out that I might have to have

> the same surgery done on left ankle, but cannot have it done till

> right ankle is completely healed up. Hoping & praying that I will not

> need surgery on that ankle because I am in a horrible amount of pain

> from the RA. All of my joints are severely swollen, red, & painful.

> Now this is where I am getting very scared. About a month ago, I

> started having problems with breathing. I am now only able to take 2-

> 3 small breaths & then have to take a gasping long deep breath. Its

> like I cannot get a good enough breath to fill my lungs. Was trying

> to ignore it until last night. Also been EXTREMELY exhausted & have

> started having bad headaches. Lose my breath very easily now & get

> worn out very easily. Been doing a LOT of sleeping. Way more than

> usual.Going to the dr even causes me to sleep several days. Have no

> energy at all. Hubby & I originally thought maybe it was because I

> was just exhausted, but even when I slept, still was having problems

> with breathing. Started having heart palpitations the last few days &

> then last night, I started feeling congested. Thats what finally

> scared me in to calling the dr. Originally I was going to make an

> appt with my pcm, but this morning, I picked up a book on RA that I

> had just checked out from the library. I read this morning that it

> can attack the lungs. Didn't know that. If I had known that, I would

> have gotten seen sooner. So I called my Rheumatologist. Her nurse

> just called me back about an hour ago. First of all, I got a talking

> to about not getting seen sooner. She then said " you know RA can

> attack the lungs & Dr. is very concerned & feels that this could be

> what is going on with you " & wants to see me tomorrow morning. I then

> had to promise her that if I start having problems with not being

> able to breath, for me to go to the ER ASAP. I told her it almost

> feels like I am drowning. She then said it definitely sounds like

> you have fluid in your lungs & that the RA is attacking your lungs.

> She said it could be a reaction to the methotrexate, but since I just

> started taking it & she started me on a very low dose & the fact that

> I only took 2 doses before having to come off of it for the surgery &

> my breathing symptoms continued to get worse along with the fact that

> the RA has been getting so severe that she ended up putting me back

> on the RA meds last week. A little sooner than originally planned. I

> also now have horrible psourisis that has also flared up & I am

> getting some of those nodules under the skin.

> Sorry for this turning into a book, but does it sound like I have RA

> of the lungs? I am so scared right now because from what I have

> researched on it here on the internet that if it is RA of the lungs,

> its fatal right? If she does confirm its in the lungs tomorrow, does

> anyone know what the next step might be? Is there a chance that I

> might get put in the hospital? To add to all of this, hubby came down

> with upper respiratory infection today & now it looks like I am

> coming down with that too. Double whammy.

> Any help would be greatly appreciated & I am sooo sorry for this

> being a book. Just very confused & scared right now. Please be honest

> with me about what could be going on. I am the type of person that I

> do better if I know the full extent of what it could be even if its

> not good news at all.

> So glad I found you all & thank you for listening.

>

> Tara S.

>

>

>

[Guest guest]

HI TARA, WELCOME! I'M 39YRS OF AGE WITH SEVERE RA,OSTEO & NEUROPATY. ON MANY

MEDS TO TRY & CONTROL THIS DREADFUL ILLNESS! WHAT MEDS R U CURRENTLY TAKING? I

TAKE MTX & YES IT DOES EFFECT THE LUNGS.

HOWEVER, I'M NOT SURE WHAT OTHER MEDS UR ON. LET MEKNOW. I'M SORRY FOR ALL YOUR

TROUBLES U HAVE BEEN GOING THROUGH. HOPE U FEEL BETTER REAL SOON. GOD BLESS,

MELYNDA

________________________________

From: cheryl.dines <cheryl.dines@...>

Sent: Wednesday, December 10, 2008 1:35:21 AM

Subject: [ ] Re: New to group. Very scared. Have ?'s. Diagnosed with RA

back in May.

Hi Tara

So sorry to hear you have this hideous disease on top over everything

else you have to manage.  I am 37 and diagnosed a year ago.  I was an

absolute mess until I found this Group.  I am sure you will find them

to be incredibly supportive and will answer all your ?'s. 

Cheryl

>

> Hi Everyone,

>

> I am new to this group. Just found it tonight. So glad I found you

> all.  Right now, I am sitting here very scared & have ?'s.  Not

sure

> of where to begin. I will try to make my history as short as I can.

> Please forgive me if it gets long. My name is Tara. I am 36 years

> old. Married to my wonderful husband, Allan (even though I know

this

> has been very hard on him). Currently living in northern Virginia.

> Unable to have children due to having severe endometriosis &

history

> of pituitary tumor (have had 3 surgeries to remove the benign mass

to

> include a craniotomy 3 years ago this month).Have had issues with

> Cushings Disease in the past. Because of it, I have to be very

> carefull when taking steriods. I have been having joint problems

for

> as long as I can remember. Diagnosed with Chondromalicia patella in

> 1988 while in high school. Have had 3 surgeries on my left knee

with

> the last one being in June of this year for a torn meniscus..again.

> Have had shoulder surgery done (bone spur). Wrist surgery

> (DeQuarvains was the diagnosis). Severe OA of left knee now. Mild

OA

> in other knee. Already have some bare spots on bone in left knee

> joint. Dr thinks I am going to need a knee replacement in about 3-5

> years. Maybe sooner. Osteopenia/Osteoporosis (it goes back & forth)

> Severe degnerative disc disease in my spine to the point where all

of

> my discs are bad except for 2-3. Because of so many vertebrae &

discs

> being involved, not a candidate for surgery. On pain management

> contract with a pain management specialist. Have to take heavy duty

> pain meds in order to be able to just function (which I HATE having

> to take) & still in a lot of pain. Always wondered if there was a

> connection with all of my joints being bad. In 1996, while we were

> stationed in GA with the military (my husband is former AD Navy. He

> is now in the Naval reserves), I had a dr who started to suspect

that

> I either had RA or Lupus. Thats when I first started to get tested.

> RA factor was always negative.  Been getting tested every year

since

> then & its still comes up negative. Been dealing with severe iron

> deficiency anemia ever since I was little. Had a hysterectomy to

try

> to cure it & it didn't. Noone could ever figure out what was

causing

> it. Hematologist asked about RA, but because the RA factor test was

> negative, RA was ruled out. Have had to have 2 iron infusions & now

> facing another one. I have to get one about every 2-3 years. In

> December of last year, I started having severe pain, swelling,

> stiffness & redness in both of my knees especially when sitting &

> standing & especially in the morning. It then started to attack my

> ankles (even though been having severe swelling off & on of ankles

> for the last several years..noone could figure out what was causing

> it till this year). The pain in my back, knees & ankles has been so

> severe that I have not been able to sleep in my own bed in about a

> year now because its on the 2nd floor. Have to avoid steps as much

as

> possible. Only go upstairs to shower & even then I need hubby's

help.

> Even painful to sleep on bed, even though we have one of those good

> mattresses for the back. Going to get a better one this coming year

> once we save up the money for it. It then spread to my

hands/fingers

> to the point where its hard for me to type. Its especially really

bad

> in the morning. Severe pain, swelling, stiffness & redness to the

> point where it would take me hours to get up & get moving.. I kept

> trying to ignore it because I have had so many things wrong with me

> medically over the years that I was afraid that it was nothing &

that

> I would be told it was all in my head, till Easter Sunday when we

> went to my mom's for the weekend. Even tried to hide it from my

> husband because I know he gets tired of all of my medical stuff

even

> though he has/is absolutely very supportive & loving. There are

times

> where it does get to him though. Anyway, Hubby & I were able to

sleep

> in the same bed since my mom lives in a one story house. Woke up

> Easter morning with my fingers all curled inward. No more hiding it

> from him. I never hide things from my husband either. Just that

this

> time, I figured the joint issues were nothing. He asked how long

that

> has been going on & at that point, fingers curling inward had only

> been going on for about a week.  He immediately suspected RA. He

got

> me in to see my Primary care doctor (PCM) the very next day. PCM

> suspected it right away when he saw how swollen, red & painfull all

> of my joints were. He did the RA factor bloodwork & immediately

> referred me to a Rheumatologist because thats when we found out

that

> 20-30% of people have false negatives.  Saw Rheumatogolist on May

> 14th, who also told me about how a lot of people have false

negatives

> & after looking over bloodwork from the last several years, was

> shocked that it wasn't caught earlier because even though my RA

> factor was negative, the rest of my bloodwork showed that I had it

> (white blood cells were off, red bloodcells were microcytic &

> something else with them, the anemia, inflammation factor was high,

> etc). She diagnosed me as having moderate to severe RA along with

> severe Fibromyalgia. After doing a chest x-ray, TB test, & some

other

> bloodwork, she put me on Enbrel. After 3 months, did not respond to

> treatment. Had to do a few rounds of steriods to give me some

relief.

> Steriods helped greatly!!! but as soon as they wore off, RA flared

> right back up. Because of history of cushings disease from pit

tumor,

> cannot do steriods that often except when absolutely necessary. RA

> has been continuing to get much worse. Been also dealing with a

> severe sprain of my right ankle. First sprained it in Aug 2005 &

its

> been getting worse ever since. Been to several ortho drs who would

> just do the air cast thing. Had a horrible fall back in Sept of

this

> year when ankle rolled out from under me as I was stepping off of a

> curb. In Sept, Rheumatologist switched me to Humira. After about 4

> weeks, I talked to her about putting me on methotrexate in addition

> to the Humira since the RA keeps getting worse.  Had to come off of

> them temporarily the first week in Nov due to finding out that I

was

> going to have right ankle surgery. I got referred to a podiatrist

in

> October for an ingrown toenail, in which he removed. At my post-op,

I

> mentioned to him the ankle issues I have been having with my right

> ankle. After doing some x-rays & an exam, he immediately scheduled

> surgery for Nov 18th. Had to come off of RA meds 1 week prior to

> surgery. Opened me up & things were worse than he/we expected. As

> soon as he made the incision, I had a TON of fluid start pouring

out

> from the ankle joint & there was a lot of inflammtion. Podiatrist

> said this was from the RA. Definitely saw severe RA within the

joint.

> Also ligament was not only torn, but it was severely torn &

> shredded.  This dr has a lot of experience dealing with patients

that

> have RA.  Anyway, I am now recovering from the surgery. Not allowed

> to put any weight on surgery foot. RA has been absolutely HORRIBLE.

I

> am wheelchair bound right now because 5 days after surgery, my left

> ankle just couldn't take all of the weight bearing on it anymore &

as

> I was trying to step up on to a platform to tackle the stairs to

get

> back in to my house, I lost my balance & went flying. Next morning,

> woke up to severe pain in both & not able to bear any weight

> on " good " ankle. I now have a severely sprained left ankle with a

> splint on it now & a cast on the right ankle. Dr doesn't want me to

> put any weight on surgery foot & because of the RA & the severe

> sprain of left foot, wants me keep off of left ankle now to & to

use

> the wheelchair as much as possible. Cast comes off tomorrow..

YAY!!!!

> Then I am going to be in a boot removeable air cast thing that

comes

> up to my knee for several weeks & will be able to hopefully start

to

> gradually put weight on it. Also found out that I might have to

have

> the same surgery done on left ankle, but cannot have it done till

> right ankle is completely healed up. Hoping & praying that I will

not

> need surgery on that ankle because I am in a horrible amount of

pain

> from the RA. All of my joints are severely swollen, red, & painful.

> Now this is where I am getting very scared. About a month ago, I

> started having problems with breathing.  I am now only able to take

2-

> 3 small breaths & then have to take a gasping long deep breath. Its

> like I cannot get a good enough breath to fill my lungs. Was trying

> to ignore it until last night. Also been EXTREMELY exhausted & have

> started having bad headaches. Lose my breath very easily now & get

> worn out very easily. Been doing a LOT of sleeping. Way more than

> usual.Going to the dr even causes me to sleep several days. Have no

> energy at all.  Hubby & I originally thought maybe it was because I

> was just exhausted, but even when I slept, still was having

problems

> with breathing. Started having heart palpitations the last few days

&

> then last night, I started feeling congested.  Thats what finally

> scared me in to calling the dr. Originally I was going to make an

> appt with my pcm, but this morning, I picked up a book on RA that I

> had just checked out from the library. I read this morning that it

> can attack the lungs. Didn't know that. If I had known that, I

would

> have gotten seen sooner. So I called my Rheumatologist. Her nurse

> just called me back about an hour ago.  First of all, I got a

talking

> to about not getting seen sooner. She then said " you know RA can

> attack the lungs & Dr. is very concerned & feels that this could be

> what is going on with you " & wants to see me tomorrow morning. I

then

> had to promise her that if I start having problems with not being

> able to breath, for me to go to the ER ASAP. I told her it almost

> feels like I am drowning.  She then said it definitely sounds like

> you have fluid in your lungs & that the RA is attacking your

lungs. 

> She said it could be a reaction to the methotrexate, but since I

just

> started taking it & she started me on a very low dose & the fact

that

> I only took 2 doses before having to come off of it for the surgery

&

> my breathing symptoms continued to get worse along with the fact

that

> the RA has been getting so severe that she ended up putting me back

> on the RA meds last week. A little sooner than originally planned.

I

> also now have horrible psourisis that has also flared up & I am

> getting some of those nodules under the skin.

> Sorry for this turning into a book, but does it sound like I have

RA

> of the lungs?  I am so scared right now because from what I have

> researched on it here on the internet that if it is RA of the

lungs,

> its fatal right? If she does confirm its in the lungs tomorrow,

does

> anyone know what the next step might be? Is there a chance that I

> might get put in the hospital? To add to all of this, hubby came

down

> with upper respiratory infection today & now it looks like I am

> coming down with that too. Double whammy.

> Any help would be greatly appreciated & I am sooo sorry for this

> being a book. Just very confused & scared right now. Please be

honest

> with me about what could be going on. I am the type of person that

I

> do better if I know the full extent of what it could be even if its

> not good news at all.

> So glad I found you all & thank you for listening.

>

> Tara S.

>

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

[Guest guest]

Tara,

Welcome. Try not to worry.

If you can, it might help to see a pulmonologist. He/she and your

rheumatologist can work together to determine what is happening with

your lungs.

Not an MD

On Tue, Dec 9, 2008 at 6:59 PM, Tara <tswilley96@...> wrote:

> Hi Everyone,

>

> I am new to this group. Just found it tonight. So glad I found you

> all. Right now, I am sitting here very scared & have ?'s. Not sure

> of where to begin. I will try to make my history as short as I can.

> Please forgive me if it gets long. My name is Tara. I am 36 years

> old. Married to my wonderful husband, Allan (even though I know this

> has been very hard on him). Currently living in northern Virginia.

> Unable to have children due to having severe endometriosis & history

> of pituitary tumor (have had 3 surgeries to remove the benign mass to

> include a craniotomy 3 years ago this month).Have had issues with

> Cushings Disease in the past. Because of it, I have to be very

> carefull when taking steriods. I have been having joint problems for

> as long as I can remember. Diagnosed with Chondromalicia patella in

> 1988 while in high school. Have had 3 surgeries on my left knee with

> the last one being in June of this year for a torn meniscus..again.

> Have had shoulder surgery done (bone spur). Wrist surgery

> (DeQuarvains was the diagnosis). Severe OA of left knee now. Mild OA

> in other knee. Already have some bare spots on bone in left knee

> joint. Dr thinks I am going to need a knee replacement in about 3-5

> years. Maybe sooner. Osteopenia/Osteoporosis (it goes back & forth)

> Severe degnerative disc disease in my spine to the point where all of

> my discs are bad except for 2-3. Because of so many vertebrae & discs

> being involved, not a candidate for surgery. On pain management

> contract with a pain management specialist. Have to take heavy duty

> pain meds in order to be able to just function (which I HATE having

> to take) & still in a lot of pain. Always wondered if there was a

> connection with all of my joints being bad. In 1996, while we were

> stationed in GA with the military (my husband is former AD Navy. He

> is now in the Naval reserves), I had a dr who started to suspect that

> I either had RA or Lupus. Thats when I first started to get tested.

> RA factor was always negative. Been getting tested every year since

> then & its still comes up negative. Been dealing with severe iron

> deficiency anemia ever since I was little. Had a hysterectomy to try

> to cure it & it didn't. Noone could ever figure out what was causing

> it. Hematologist asked about RA, but because the RA factor test was

> negative, RA was ruled out. Have had to have 2 iron infusions & now

> facing another one. I have to get one about every 2-3 years. In

> December of last year, I started having severe pain, swelling,

> stiffness & redness in both of my knees especially when sitting &

> standing & especially in the morning. It then started to attack my

> ankles (even though been having severe swelling off & on of ankles

> for the last several years..noone could figure out what was causing

> it till this year). The pain in my back, knees & ankles has been so

> severe that I have not been able to sleep in my own bed in about a

> year now because its on the 2nd floor. Have to avoid steps as much as

> possible. Only go upstairs to shower & even then I need hubby's help.

> Even painful to sleep on bed, even though we have one of those good

> mattresses for the back. Going to get a better one this coming year

> once we save up the money for it. It then spread to my hands/fingers

> to the point where its hard for me to type. Its especially really bad

> in the morning. Severe pain, swelling, stiffness & redness to the

> point where it would take me hours to get up & get moving. I kept

> trying to ignore it because I have had so many things wrong with me

> medically over the years that I was afraid that it was nothing & that

> I would be told it was all in my head, till Easter Sunday when we

> went to my mom's for the weekend. Even tried to hide it from my

> husband because I know he gets tired of all of my medical stuff even

> though he has/is absolutely very supportive & loving. There are times

> where it does get to him though. Anyway, Hubby & I were able to sleep

> in the same bed since my mom lives in a one story house. Woke up

> Easter morning with my fingers all curled inward. No more hiding it

> from him. I never hide things from my husband either. Just that this

> time, I figured the joint issues were nothing. He asked how long that

> has been going on & at that point, fingers curling inward had only

> been going on for about a week. He immediately suspected RA. He got

> me in to see my Primary care doctor (PCM) the very next day. PCM

> suspected it right away when he saw how swollen, red & painfull all

> of my joints were. He did the RA factor bloodwork & immediately

> referred me to a Rheumatologist because thats when we found out that

> 20-30% of people have false negatives. Saw Rheumatogolist on May

> 14th, who also told me about how a lot of people have false negatives

> & after looking over bloodwork from the last several years, was

> shocked that it wasn't caught earlier because even though my RA

> factor was negative, the rest of my bloodwork showed that I had it

> (white blood cells were off, red bloodcells were microcytic &

> something else with them, the anemia, inflammation factor was high,

> etc). She diagnosed me as having moderate to severe RA along with

> severe Fibromyalgia. After doing a chest x-ray, TB test, & some other

> bloodwork, she put me on Enbrel. After 3 months, did not respond to

> treatment. Had to do a few rounds of steriods to give me some relief.

> Steriods helped greatly!!! but as soon as they wore off, RA flared

> right back up. Because of history of cushings disease from pit tumor,

> cannot do steriods that often except when absolutely necessary. RA

> has been continuing to get much worse. Been also dealing with a

> severe sprain of my right ankle. First sprained it in Aug 2005 & its

> been getting worse ever since. Been to several ortho drs who would

> just do the air cast thing. Had a horrible fall back in Sept of this

> year when ankle rolled out from under me as I was stepping off of a

> curb. In Sept, Rheumatologist switched me to Humira. After about 4

> weeks, I talked to her about putting me on methotrexate in addition

> to the Humira since the RA keeps getting worse. Had to come off of

> them temporarily the first week in Nov due to finding out that I was

> going to have right ankle surgery. I got referred to a podiatrist in

> October for an ingrown toenail, in which he removed. At my post-op, I

> mentioned to him the ankle issues I have been having with my right

> ankle. After doing some x-rays & an exam, he immediately scheduled

> surgery for Nov 18th. Had to come off of RA meds 1 week prior to

> surgery. Opened me up & things were worse than he/we expected. As

> soon as he made the incision, I had a TON of fluid start pouring out

> from the ankle joint & there was a lot of inflammtion. Podiatrist

> said this was from the RA. Definitely saw severe RA within the joint.

> Also ligament was not only torn, but it was severely torn &

> shredded. This dr has a lot of experience dealing with patients that

> have RA. Anyway, I am now recovering from the surgery. Not allowed

> to put any weight on surgery foot. RA has been absolutely HORRIBLE. I

> am wheelchair bound right now because 5 days after surgery, my left

> ankle just couldn't take all of the weight bearing on it anymore & as

> I was trying to step up on to a platform to tackle the stairs to get

> back in to my house, I lost my balance & went flying. Next morning,

> woke up to severe pain in both & not able to bear any weight

> on " good " ankle. I now have a severely sprained left ankle with a

> splint on it now & a cast on the right ankle. Dr doesn't want me to

> put any weight on surgery foot & because of the RA & the severe

> sprain of left foot, wants me keep off of left ankle now to & to use

> the wheelchair as much as possible. Cast comes off tomorrow. YAY!!!!

> Then I am going to be in a boot removeable air cast thing that comes

> up to my knee for several weeks & will be able to hopefully start to

> gradually put weight on it. Also found out that I might have to have

> the same surgery done on left ankle, but cannot have it done till

> right ankle is completely healed up. Hoping & praying that I will not

> need surgery on that ankle because I am in a horrible amount of pain

> from the RA. All of my joints are severely swollen, red, & painful.

> Now this is where I am getting very scared. About a month ago, I

> started having problems with breathing. I am now only able to take 2-

> 3 small breaths & then have to take a gasping long deep breath. Its

> like I cannot get a good enough breath to fill my lungs. Was trying

> to ignore it until last night. Also been EXTREMELY exhausted & have

> started having bad headaches. Lose my breath very easily now & get

> worn out very easily. Been doing a LOT of sleeping. Way more than

> usual.Going to the dr even causes me to sleep several days. Have no

> energy at all. Hubby & I originally thought maybe it was because I

> was just exhausted, but even when I slept, still was having problems

> with breathing. Started having heart palpitations the last few days &

> then last night, I started feeling congested. Thats what finally

> scared me in to calling the dr. Originally I was going to make an

> appt with my pcm, but this morning, I picked up a book on RA that I

> had just checked out from the library. I read this morning that it

> can attack the lungs. Didn't know that. If I had known that, I would

> have gotten seen sooner. So I called my Rheumatologist. Her nurse

> just called me back about an hour ago. First of all, I got a talking

> to about not getting seen sooner. She then said " you know RA can

> attack the lungs & Dr. is very concerned & feels that this could be

> what is going on with you " & wants to see me tomorrow morning. I then

> had to promise her that if I start having problems with not being

> able to breath, for me to go to the ER ASAP. I told her it almost

> feels like I am drowning. She then said it definitely sounds like

> you have fluid in your lungs & that the RA is attacking your lungs.

> She said it could be a reaction to the methotrexate, but since I just

> started taking it & she started me on a very low dose & the fact that

> I only took 2 doses before having to come off of it for the surgery &

> my breathing symptoms continued to get worse along with the fact that

> the RA has been getting so severe that she ended up putting me back

> on the RA meds last week. A little sooner than originally planned. I

> also now have horrible psourisis that has also flared up & I am

> getting some of those nodules under the skin.

> Sorry for this turning into a book, but does it sound like I have RA

> of the lungs? I am so scared right now because from what I have

> researched on it here on the internet that if it is RA of the lungs,

> its fatal right? If she does confirm its in the lungs tomorrow, does

> anyone know what the next step might be? Is there a chance that I

> might get put in the hospital? To add to all of this, hubby came down

> with upper respiratory infection today & now it looks like I am

> coming down with that too. Double whammy.

> Any help would be greatly appreciated & I am sooo sorry for this

> being a book. Just very confused & scared right now. Please be honest

> with me about what could be going on. I am the type of person that I

> do better if I know the full extent of what it could be even if its

> not good news at all.

> So glad I found you all & thank you for listening.

>

> Tara S.