Re: RA in Kansas/My story/part 4

June 8, 2005

One word: ATTORNEY

This has malpractice written all over it, and there are a lot of

lawyers out there who will work on contingency, which means you pay

nothing unless you win. Of course, they take most of what you get,

but it will send a message. They'll get you into a good doctor,

too...this sounds like a slam dunk case to me.

OK, two words. MEDIA

Since some of this has to do with Medicaid, methinks the media would

LOVE to hear your story. Call the first word, first, though.

The only other advice is to see if you can get a female doctor. I

apologize to all you men out there, but male doctors are often (not

always) real jerks when it comes to treating women.

Good luck.

> I met with the new doc, he was told by medicaid not to give any

pain

> meds. Okay, no problem. At that point, I just wanted to know

what

> in the same ___ was gonna on. He didn't know. I was having a

good

> day then too. He told me to come back and see him if anything

came

> up and put me on Protonix for my stomach. So, I went back when I

had

> problems with my wrists. He sent me for physical therapy. It was

> like I developed carpal tunnel over night. Therapy went fine, got

off

> on good behavior. The only real problem there was the ultrasound

> treatment - that was a no go. WOW! It felt as though the sound

> waves were a hammer. Wanh! The doc thought it was a reaction to

the

> prednisone. Then it was evident that I did have something. I

spent

> the majority of my day in bed. My relationship deteriorated, my

> family copped an attitude (not a very supportive one) ya know the

> drill. I went from 120lbs. to 170. Then I read some of my old

> journal. I seen the " come and go " pattern. I then started taking

> things a little more serious and tried to find information on

various

> arthritic conditions and the rheumatoid factor. At that time, I

had

> no access to a computer. Also, before Dr. Celebrex started me on

depo-

> provera shots. Contributed the weight gain to that. (WRONG) It is

> from the inactivity. I then had various problems with my ankles,

> knees and seen a co-doc for my back again.(My doc was off taking

his

> boards) He was a real jerk-off! He sent me for some x-rays and

> prescribed physical therapy and flexeril. I completed therapy

again

> and my x-rays revealed mild t-spine scoliosis with mild left

> cinvexity in the upper thoracic spine region with a mild

conpensatory

> curvature at the thoracolumbar junction. No fracture, thank god!

My

> lumbar showed no acute fractures whatever that means? There was

> noted early degenerative facet joint hypertrophic change in the

> lumbar spine primarily on the left at L4-5 and L5-S1. It also

noted

> congenital lumbarization of the first sacral segment and the psoas

> muscle was well visualized? Went back to see the same fellow for

the

> x-ray results and he said, " unremarkable " and just to go home and

go

> to bed for a month were his exact words. I started to lose hope

then..

> While laying in bed all the time and living in someone elses home

> where I simply couldn't rearrange their house to meet my limited

> abilities. By then, I had already snapped and was in counseling.

At

> one visit there I was crying and in extreme pain and my counselor

> called the doc's office and sent me over there. I then seen

another

> doc, he gave me three injections in my back. It helped alot to

take

> the ungodly edge off the pain. I was re-scheduled to see him for

a

> follow=up in 3 days. Went back and he was no longer available and

I

> was seen by Dr, Jerk off again who told me to go home and go to

bed

> for another month. Then to top it off, I get a denial of physical

> therapy because he isn't my assigned doc. I got sicker and sicker

and

> seen that the extreme flares seem to be the last month of every

depo

> shot. (Depo last 3 months) I then was so fatigued and went to see

the

> doc and ended up seeing the assistant. I proceeded to cry and

tell

> him that I was dying and she said no in a manner to me as if I was

> hysterical. We talked for a bit though, she did listen then. At

> that visit I couldn't use my hands. I couldn't open my

toothpaste,

> etc... She took me seriously and tested me for Lupus. She said

that

> she would call me personally if anything was wrong. She called,

the

> RA factor was present, sed rate @ 25, ANA neg. and then instructed

me

> to see my doctor and set up an appt. In the mean time, my hands

were

> crappy and I had like mini cysts at the base of each thumb. They

had

> two assistants check me. They concluded that it was arthritis and

> told me to take tylenol and to keep my appt. with me primary doc.

> During this time I ended up missing my sons wedding in Wyoming.

He

> didn't speak to me for over a year! My family freaked out. It is

all

> in my head reared it's ugly head again. Peachy! I finally got to

see

> my doc and he couldn't feel any bumps then and thought like me

that

> it was the depo shots and took me off of them and once again

> instructed me to see a therapist. He also stated that he wasn't

> concerned about the x-rays or the blood work. I stopeed any and

all

> meds at that point in case it was the meds reflecting the RA

factor.

> That simply wasn't the case. I gave up essentially. No support

and

> having everyone think my head could control my blood pressure and

> pain was too much. Watching my relationship turn upside down

> starting eating at me. At some point being mad at my honey who

just

> didn't get that I didn't feel good and couldn't do the same things

> set me off in the right direction. I decided that I wasn't ready

to

> lay down and just die at that point. My honey was an OTR truck

driver

> back then and he wanted me to go and just rest on the truck. That

> was a no go. I ended up furious and came home and

started " arethra

> therapy " . Just like moving any little bit as I noticed that my

> muscles had atrophied. So, I would try to dance to respect. My

> honey had taken me out with some friends once upon a time and we

> ended up leaving because I got so upset because it was at that

very

> moment that I realized how much I had deteriorated because dancing

I

> use to love and I physically can not. Man was my head doing a # on

> me. I then was doing so so. Ya know the drill pain, done for the

day

> by 10:00 a.m. fever, etc... It then hit me with a bang, it isn't

the

> depo, it is another flare. I was devastated. Like a big slap in

the

> face. Off to the doctor for my re-check. I took a friend and we

> proceeded to tell him exactly how much I have deteriorated. I

told

> him that I thought it was psoriatric arthritis hence the " come and

> go " and with polymyaglia rheumatica. He asked who told me that and

I

> said no-one. He then noted that he knew nothing of all my visits,

> bloodwork, etc.. I asked about the therapy pool at the YMCA until

I

> get the therapy situation straightened out. I also asked for a

> referal to a rheumy and a skin dr. about my clubbing and excema.

He

> sent me for lab work, gave me the script for the therapy pool, and

> told me to come back and show him any rashes and that he would be

> available. I then had a rash and went back and low and behold he

was

> there in the office but was unable to see me as he was on

vacation.

> Go figure. I had to go there three times just to see an

assistant.

> Which brings us up to date, without tackling the stomach problems.

June 8, 2005

One word: ATTORNEY

This has malpractice written all over it, and there are a lot of

lawyers out there who will work on contingency, which means you pay

nothing unless you win. Of course, they take most of what you get,

but it will send a message. They'll get you into a good doctor,

too...this sounds like a slam dunk case to me.

OK, two words. MEDIA

Since some of this has to do with Medicaid, methinks the media would

LOVE to hear your story. Call the first word, first, though.

The only other advice is to see if you can get a female doctor. I

apologize to all you men out there, but male doctors are often (not

always) real jerks when it comes to treating women.

Good luck.

> I met with the new doc, he was told by medicaid not to give any

pain

> meds. Okay, no problem. At that point, I just wanted to know

what

> in the same ___ was gonna on. He didn't know. I was having a

good

> day then too. He told me to come back and see him if anything

came

> up and put me on Protonix for my stomach. So, I went back when I

had

> problems with my wrists. He sent me for physical therapy. It was

> like I developed carpal tunnel over night. Therapy went fine, got

off

> on good behavior. The only real problem there was the ultrasound

> treatment - that was a no go. WOW! It felt as though the sound

> waves were a hammer. Wanh! The doc thought it was a reaction to

the

> prednisone. Then it was evident that I did have something. I

spent

> the majority of my day in bed. My relationship deteriorated, my

> family copped an attitude (not a very supportive one) ya know the

> drill. I went from 120lbs. to 170. Then I read some of my old

> journal. I seen the " come and go " pattern. I then started taking

> things a little more serious and tried to find information on

various

> arthritic conditions and the rheumatoid factor. At that time, I

had

> no access to a computer. Also, before Dr. Celebrex started me on

depo-

> provera shots. Contributed the weight gain to that. (WRONG) It is

> from the inactivity. I then had various problems with my ankles,

> knees and seen a co-doc for my back again.(My doc was off taking

his

> boards) He was a real jerk-off! He sent me for some x-rays and

> prescribed physical therapy and flexeril. I completed therapy

again

> and my x-rays revealed mild t-spine scoliosis with mild left

> cinvexity in the upper thoracic spine region with a mild

conpensatory

> curvature at the thoracolumbar junction. No fracture, thank god!

My

> lumbar showed no acute fractures whatever that means? There was

> noted early degenerative facet joint hypertrophic change in the

> lumbar spine primarily on the left at L4-5 and L5-S1. It also

noted

> congenital lumbarization of the first sacral segment and the psoas

> muscle was well visualized? Went back to see the same fellow for

the

> x-ray results and he said, " unremarkable " and just to go home and

go

> to bed for a month were his exact words. I started to lose hope

then..

> While laying in bed all the time and living in someone elses home

> where I simply couldn't rearrange their house to meet my limited

> abilities. By then, I had already snapped and was in counseling.

At

> one visit there I was crying and in extreme pain and my counselor

> called the doc's office and sent me over there. I then seen

another

> doc, he gave me three injections in my back. It helped alot to

take

> the ungodly edge off the pain. I was re-scheduled to see him for

a

> follow=up in 3 days. Went back and he was no longer available and

I

> was seen by Dr, Jerk off again who told me to go home and go to

bed

> for another month. Then to top it off, I get a denial of physical

> therapy because he isn't my assigned doc. I got sicker and sicker

and

> seen that the extreme flares seem to be the last month of every

depo

> shot. (Depo last 3 months) I then was so fatigued and went to see

the

> doc and ended up seeing the assistant. I proceeded to cry and

tell

> him that I was dying and she said no in a manner to me as if I was

> hysterical. We talked for a bit though, she did listen then. At

> that visit I couldn't use my hands. I couldn't open my

toothpaste,

> etc... She took me seriously and tested me for Lupus. She said

that

> she would call me personally if anything was wrong. She called,

the

> RA factor was present, sed rate @ 25, ANA neg. and then instructed

me

> to see my doctor and set up an appt. In the mean time, my hands

were

> crappy and I had like mini cysts at the base of each thumb. They

had

> two assistants check me. They concluded that it was arthritis and

> told me to take tylenol and to keep my appt. with me primary doc.

> During this time I ended up missing my sons wedding in Wyoming.

He

> didn't speak to me for over a year! My family freaked out. It is

all

> in my head reared it's ugly head again. Peachy! I finally got to

see

> my doc and he couldn't feel any bumps then and thought like me

that

> it was the depo shots and took me off of them and once again

> instructed me to see a therapist. He also stated that he wasn't

> concerned about the x-rays or the blood work. I stopeed any and

all

> meds at that point in case it was the meds reflecting the RA

factor.

> That simply wasn't the case. I gave up essentially. No support

and

> having everyone think my head could control my blood pressure and

> pain was too much. Watching my relationship turn upside down

> starting eating at me. At some point being mad at my honey who

just

> didn't get that I didn't feel good and couldn't do the same things

> set me off in the right direction. I decided that I wasn't ready

to

> lay down and just die at that point. My honey was an OTR truck

driver

> back then and he wanted me to go and just rest on the truck. That

> was a no go. I ended up furious and came home and

started " arethra

> therapy " . Just like moving any little bit as I noticed that my

> muscles had atrophied. So, I would try to dance to respect. My

> honey had taken me out with some friends once upon a time and we

> ended up leaving because I got so upset because it was at that

very

> moment that I realized how much I had deteriorated because dancing

I

> use to love and I physically can not. Man was my head doing a # on

> me. I then was doing so so. Ya know the drill pain, done for the

day

> by 10:00 a.m. fever, etc... It then hit me with a bang, it isn't

the

> depo, it is another flare. I was devastated. Like a big slap in

the

> face. Off to the doctor for my re-check. I took a friend and we

> proceeded to tell him exactly how much I have deteriorated. I

told

> him that I thought it was psoriatric arthritis hence the " come and

> go " and with polymyaglia rheumatica. He asked who told me that and

I

> said no-one. He then noted that he knew nothing of all my visits,

> bloodwork, etc.. I asked about the therapy pool at the YMCA until

I

> get the therapy situation straightened out. I also asked for a

> referal to a rheumy and a skin dr. about my clubbing and excema.

He

> sent me for lab work, gave me the script for the therapy pool, and

> told me to come back and show him any rashes and that he would be

> available. I then had a rash and went back and low and behold he

was

> there in the office but was unable to see me as he was on

vacation.

> Go figure. I had to go there three times just to see an

assistant.

> Which brings us up to date, without tackling the stomach problems.

June 8, 2005

Kim, you've mentioned eczema and psoriatic arthritis. Did the dermatologist

confirm either psoriasis or eczema?

About the clubbing of your fingers - what does your skin look like near the

clubbing? Are all of them clubbed? What about your feet? What sort of

investigations have they done regarding the clubbing?

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] RA in Kansas/My story/part 4

>I met with the new doc, he was told by medicaid not to give any pain

> meds. Okay, no problem. At that point, I just wanted to know what

> in the same ___ was gonna on. He didn't know. I was having a good

> day then too. He told me to come back and see him if anything came

> up and put me on Protonix for my stomach. So, I went back when I had

> problems with my wrists. He sent me for physical therapy. It was

> like I developed carpal tunnel over night. Therapy went fine, got off

> on good behavior. The only real problem there was the ultrasound

> treatment - that was a no go. WOW! It felt as though the sound

> waves were a hammer. Wanh! The doc thought it was a reaction to the

> prednisone. Then it was evident that I did have something. I spent

> the majority of my day in bed. My relationship deteriorated, my

> family copped an attitude (not a very supportive one) ya know the

> drill. I went from 120lbs. to 170. Then I read some of my old

> journal. I seen the " come and go " pattern. I then started taking

> things a little more serious and tried to find information on various

> arthritic conditions and the rheumatoid factor. At that time, I had

> no access to a computer. Also, before Dr. Celebrex started me on depo-

> provera shots. Contributed the weight gain to that. (WRONG) It is

> from the inactivity. I then had various problems with my ankles,

> knees and seen a co-doc for my back again.(My doc was off taking his

> boards) He was a real jerk-off! He sent me for some x-rays and

> prescribed physical therapy and flexeril. I completed therapy again

> and my x-rays revealed mild t-spine scoliosis with mild left

> cinvexity in the upper thoracic spine region with a mild conpensatory

> curvature at the thoracolumbar junction. No fracture, thank god! My

> lumbar showed no acute fractures whatever that means? There was

> noted early degenerative facet joint hypertrophic change in the

> lumbar spine primarily on the left at L4-5 and L5-S1. It also noted

> congenital lumbarization of the first sacral segment and the psoas

> muscle was well visualized? Went back to see the same fellow for the

> x-ray results and he said, " unremarkable " and just to go home and go

> to bed for a month were his exact words. I started to lose hope then..

> While laying in bed all the time and living in someone elses home

> where I simply couldn't rearrange their house to meet my limited

> abilities. By then, I had already snapped and was in counseling. At

> one visit there I was crying and in extreme pain and my counselor

> called the doc's office and sent me over there. I then seen another

> doc, he gave me three injections in my back. It helped alot to take

> the ungodly edge off the pain. I was re-scheduled to see him for a

> follow=up in 3 days. Went back and he was no longer available and I

> was seen by Dr, Jerk off again who told me to go home and go to bed

> for another month. Then to top it off, I get a denial of physical

> therapy because he isn't my assigned doc. I got sicker and sicker and

> seen that the extreme flares seem to be the last month of every depo

> shot. (Depo last 3 months) I then was so fatigued and went to see the

> doc and ended up seeing the assistant. I proceeded to cry and tell

> him that I was dying and she said no in a manner to me as if I was

> hysterical. We talked for a bit though, she did listen then. At

> that visit I couldn't use my hands. I couldn't open my toothpaste,

> etc... She took me seriously and tested me for Lupus. She said that

> she would call me personally if anything was wrong. She called, the

> RA factor was present, sed rate @ 25, ANA neg. and then instructed me

> to see my doctor and set up an appt. In the mean time, my hands were

> crappy and I had like mini cysts at the base of each thumb. They had

> two assistants check me. They concluded that it was arthritis and

> told me to take tylenol and to keep my appt. with me primary doc.

> During this time I ended up missing my sons wedding in Wyoming. He

> didn't speak to me for over a year! My family freaked out. It is all

> in my head reared it's ugly head again. Peachy! I finally got to see

> my doc and he couldn't feel any bumps then and thought like me that

> it was the depo shots and took me off of them and once again

> instructed me to see a therapist. He also stated that he wasn't

> concerned about the x-rays or the blood work. I stopeed any and all

> meds at that point in case it was the meds reflecting the RA factor.

> That simply wasn't the case. I gave up essentially. No support and

> having everyone think my head could control my blood pressure and

> pain was too much. Watching my relationship turn upside down

> starting eating at me. At some point being mad at my honey who just

> didn't get that I didn't feel good and couldn't do the same things

> set me off in the right direction. I decided that I wasn't ready to

> lay down and just die at that point. My honey was an OTR truck driver

> back then and he wanted me to go and just rest on the truck. That

> was a no go. I ended up furious and came home and started " arethra

> therapy " . Just like moving any little bit as I noticed that my

> muscles had atrophied. So, I would try to dance to respect. My

> honey had taken me out with some friends once upon a time and we

> ended up leaving because I got so upset because it was at that very

> moment that I realized how much I had deteriorated because dancing I

> use to love and I physically can not. Man was my head doing a # on

> me. I then was doing so so. Ya know the drill pain, done for the day

> by 10:00 a.m. fever, etc... It then hit me with a bang, it isn't the

> depo, it is another flare. I was devastated. Like a big slap in the

> face. Off to the doctor for my re-check. I took a friend and we

> proceeded to tell him exactly how much I have deteriorated. I told

> him that I thought it was psoriatric arthritis hence the " come and

> go " and with polymyaglia rheumatica. He asked who told me that and I

> said no-one. He then noted that he knew nothing of all my visits,

> bloodwork, etc.. I asked about the therapy pool at the YMCA until I

> get the therapy situation straightened out. I also asked for a

> referal to a rheumy and a skin dr. about my clubbing and excema. He

> sent me for lab work, gave me the script for the therapy pool, and

> told me to come back and show him any rashes and that he would be

> available. I then had a rash and went back and low and behold he was

> there in the office but was unable to see me as he was on vacation.

> Go figure. I had to go there three times just to see an assistant.

> Which brings us up to date, without tackling the stomach problems.

>

June 8, 2005