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HI,

What is the name of your doctor? My mom is also in Houston, TX.

Thanks,

>

> hi nicole, im so sorry about your mom. i can't believe the rheummy

is not able to determine the type of ra, that's kinda strange!! my

fingers are also destroyed by the severity of my ra. sometimes i have

to have help eating & other thing done for me due to the pain & fusion

of my joints. it sux! i feel bad mostly every day & then when i do

feel good i still need help! i've been sick with ra since age 5. they

ran all kinds of tests on me blood work etc. my dr. here told my mom

back then it was growing pains, to keep me in bed. GROWING PAINS MY

A--!! it was not until my mom took me to houston,tx.. the dr. dx me

right away. so yes i believe sometimes they can't figure it out but

you have to keep on them!! i don't think it's hereditary because when

i was pregnant with my daughter, i went through genetic testing &

everything just to be sure. i was BLESSED WITH A HEALTHY BABY GIRL!!

no one else in my family has it just me, so i don't know where i got

it cuz i

> was born a healthy baby.. everyone ask how did u get ra & i tell

them i don't know, i guess god choose me to bear this cross. so that's

what i'm doing! about the pregnancy question, when i was pregnant with

my daughter,alyssa i felt SO ALIVE & FULL OF ENERGY.

> however, after she was born my ra was in full force & i was in soooo

much pain i had to start back up on all my meds. the prednisone HELPED

the most!! hang in there nicole, you will have good & bad days,

HOPEFULLY more GOOD days.... HOPE i could be of some help... god

bless,melyndagamez 6/7/08 5:25p.m.central time

>

>

> [ ] Please help!

>

> My mom has unidentifiable arthritis. She has been seeing a

> reumatologist who says it is one of the most aggressive cases she has

> ever seen.

>

> It is completely destroying her joints. She has no joints left in her

> index fingers, they are entirely fused together. Doctor has ruled out

> RA but assumed it was autoimmune and has been using chemo-like IV

> drugs on her for over a year. Instead of getting better, it has gotten

> MUCH MUCH worse.

>

> Her doc says she only has 3 patients who are like my mom. She has

> recommended for my mom to get a second opinion, because she doesn't

> know if she is " missing " something.

>

> Now the doctor thinks it is inflammatory arthritis and is going to d/c

> the IVs soon, and start her on antibiotics contintuously. And maybe

> steroids. My mom doesn't want to take steroids, she will only take

> them as a last resort. IN the meantime her arthritis has gotten

> horrendous over the past two years. She went from having red nodules

> on her joints, to having no joints.

>

> Has anyone heard of a case like this, where doctors could not identify

> the type of arthritis, and treatment has not helped.

>

> Also, I am wondering if this is hereditary. Because I started having

> joint pains at 27, then I got pregnant after I turned 28 and the pains

> went away during the fourth month of pregnancy. Now my son is four

> months old, and I think I have full blown arthritis in my fingers and

> toes.

>

> Thanks,

>

>

>

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

>

>

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Guest guest

hi nicole, the drs.name was dr. brewer, he was a children's dr. that was back in

1974.. sorry. god bless,melyndagamez

[ ] Please help!

>

> My mom has unidentifiable arthritis. She has been seeing a

> reumatologist who says it is one of the most aggressive cases she has

> ever seen. 

>

> It is completely destroying her joints. She has no joints left in her

> index fingers, they are entirely fused together. Doctor has ruled out

> RA but assumed it was autoimmune and has been using chemo-like IV

> drugs on her for over a year. Instead of getting better, it has gotten

> MUCH MUCH worse..

>

> Her doc says she only has 3 patients who are like my mom. She has

> recommended for my mom to get a second opinion, because she doesn't

> know if she is " missing " something.

>

> Now the doctor thinks it is inflammatory arthritis and is going to d/c

> the IVs soon, and start her on antibiotics contintuously. And maybe

> steroids. My mom doesn't want to take steroids, she will only take

> them as a last resort. IN the meantime her arthritis has gotten

> horrendous over the past two years. She went from having red nodules

> on her joints, to having no joints.

>

> Has anyone heard of a case like this, where doctors could not identify

> the type of arthritis, and treatment has not helped.

>

> Also, I am wondering if this is hereditary. Because I started having

> joint pains at 27, then I got pregnant after I turned 28 and the pains

> went away during the fourth month of pregnancy. Now my son is four

> months old, and I think I have full blown arthritis in my fingers and

> toes.

>

> Thanks,

>

>

>

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

>

>

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Guest guest

Your mother should get a second opinion ASAP, .

Not an MD

On Sat, Jun 7, 2008 at 1:23 PM, OM Shanti <nk_laurie@...> wrote:

> My mom has unidentifiable arthritis. She has been seeing a

> reumatologist who says it is one of the most aggressive cases she has

> ever seen.

>

> It is completely destroying her joints. She has no joints left in her

> index fingers, they are entirely fused together. Doctor has ruled out

> RA but assumed it was autoimmune and has been using chemo-like IV

> drugs on her for over a year. Instead of getting better, it has gotten

> MUCH MUCH worse.

>

> Her doc says she only has 3 patients who are like my mom. She has

> recommended for my mom to get a second opinion, because she doesn't

> know if she is " missing " something.

>

> Now the doctor thinks it is inflammatory arthritis and is going to d/c

> the IVs soon, and start her on antibiotics contintuously. And maybe

> steroids. My mom doesn't want to take steroids, she will only take

> them as a last resort. IN the meantime her arthritis has gotten

> horrendous over the past two years. She went from having red nodules

> on her joints, to having no joints.

>

> Has anyone heard of a case like this, where doctors could not identify

> the type of arthritis, and treatment has not helped.

>

> Also, I am wondering if this is hereditary. Because I started having

> joint pains at 27, then I got pregnant after I turned 28 and the pains

> went away during the fourth month of pregnancy. Now my son is four

> months old, and I think I have full blown arthritis in my fingers and

> toes.

>

> Thanks,

>

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Guest guest

In about four years they have not been able to identify & nbsp; my inflammatory

arthritis. & nbsp; I go from being diagnosed with arthopathies, to unspecified

diffuse connective tissue disease, to seronegative RA. & nbsp; I have evidence of

changes being made in my knees (although hips, hands, fingers, feet, ankles, are

very bad as well). & nbsp; I'm treated with DMARDs but still have a lot of

pain. & nbsp; Has she been to a specialty hospital with a rheumatologist?

From: OM Shanti & lt;nk_laurie@... & gt;

Subject: [ ] Please help!

Date: Saturday, June 7, 2008, 2:23 PM

My mom has unidentifiable arthritis. She has been seeing a

reumatologist who says it is one of the most aggressive cases she has

ever seen.

It is completely destroying her joints. She has no joints left in her

index fingers, they are entirely fused together. Doctor has ruled out

RA but assumed it was autoimmune and has been using chemo-like IV

drugs on her for over a year. Instead of getting better, it has gotten

MUCH MUCH worse.

Her doc says she only has 3 patients who are like my mom. She has

recommended for my mom to get a second opinion, because she doesn't

know if she is " missing " something.

Now the doctor thinks it is inflammatory arthritis and is going to d/c

the IVs soon, and start her on antibiotics contintuously. And maybe

steroids. My mom doesn't want to take steroids, she will only take

them as a last resort. IN the meantime her arthritis has gotten

horrendous over the past two years. She went from having red nodules

on her joints, to having no joints.

Has anyone heard of a case like this, where doctors could not identify

the type of arthritis, and treatment has not helped.

Also, I am wondering if this is hereditary. Because I started having

joint pains at 27, then I got pregnant after I turned 28 and the pains

went away during the fourth month of pregnancy. Now my son is four

months old, and I think I have full blown arthritis in my fingers and

toes.

Thanks,

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Guest guest

She has an appointment with a doctor in August for a second opinion

(the doc was backed up eight months, she made the appt in jan)! Her

doctor even told her to get a second opinion because she doesn't know

what to do.

One thing to not is that she has not yet tried ANY steroids because

she doesn't want to take them. She will only take them as a last

resort. I would say it is time but thats just my opinion, I don't know

a lot about this. I have had to take low dose steroids before to help

tolerate thyroid meds but I am sure it is different.

> > My mom has unidentifiable arthritis. She has been seeing a

> > reumatologist who says it is one of the most aggressive cases she has

> > ever seen.

> >

> > It is completely destroying her joints. She has no joints left in her

> > index fingers, they are entirely fused together. Doctor has ruled out

> > RA but assumed it was autoimmune and has been using chemo-like IV

> > drugs on her for over a year. Instead of getting better, it has gotten

> > MUCH MUCH worse.

> >

> > Her doc says she only has 3 patients who are like my mom. She has

> > recommended for my mom to get a second opinion, because she doesn't

> > know if she is " missing " something.

> >

> > Now the doctor thinks it is inflammatory arthritis and is going to d/c

> > the IVs soon, and start her on antibiotics contintuously. And maybe

> > steroids. My mom doesn't want to take steroids, she will only take

> > them as a last resort. IN the meantime her arthritis has gotten

> > horrendous over the past two years. She went from having red nodules

> > on her joints, to having no joints.

> >

> > Has anyone heard of a case like this, where doctors could not identify

> > the type of arthritis, and treatment has not helped.

> >

> > Also, I am wondering if this is hereditary. Because I started having

> > joint pains at 27, then I got pregnant after I turned 28 and the pains

> > went away during the fourth month of pregnancy. Now my son is four

> > months old, and I think I have full blown arthritis in my fingers and

> > toes.

> >

> > Thanks,

> >

>

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Guest guest

That really sucks that you have had this for so long. I am not sure

how I would deal with it, it is already getting hard to lift and

change my son. :(

>

> hi nicole, im so sorry about your mom. i can't believe the rheummy

is not able to determine the type of ra, that's kinda strange!! my

fingers are also destroyed by the severity of my ra. sometimes i have

to have help eating & other thing done for me due to the pain & fusion

of my joints. it sux! i feel bad mostly every day & then when i do

feel good i still need help! i've been sick with ra since age 5. they

ran all kinds of tests on me blood work etc. my dr. here told my mom

back then it was growing pains, to keep me in bed. GROWING PAINS MY

A--!! it was not until my mom took me to houston,tx.. the dr. dx me

right away. so yes i believe sometimes they can't figure it out but

you have to keep on them!! i don't think it's hereditary because when

i was pregnant with my daughter, i went through genetic testing &

everything just to be sure. i was BLESSED WITH A HEALTHY BABY GIRL!!

no one else in my family has it just me, so i don't know where i got

it cuz i

> was born a healthy baby.. everyone ask how did u get ra & i tell

them i don't know, i guess god choose me to bear this cross. so that's

what i'm doing! about the pregnancy question, when i was pregnant with

my daughter,alyssa i felt SO ALIVE & FULL OF ENERGY.

> however, after she was born my ra was in full force & i was in soooo

much pain i had to start back up on all my meds. the prednisone HELPED

the most!! hang in there nicole, you will have good & bad days,

HOPEFULLY more GOOD days.... HOPE i could be of some help... god

bless,melyndagamez 6/7/08 5:25p.m.central time

>

>

> [ ] Please help!

>

> My mom has unidentifiable arthritis. She has been seeing a

> reumatologist who says it is one of the most aggressive cases she has

> ever seen.

>

> It is completely destroying her joints. She has no joints left in her

> index fingers, they are entirely fused together. Doctor has ruled out

> RA but assumed it was autoimmune and has been using chemo-like IV

> drugs on her for over a year. Instead of getting better, it has gotten

> MUCH MUCH worse.

>

> Her doc says she only has 3 patients who are like my mom. She has

> recommended for my mom to get a second opinion, because she doesn't

> know if she is " missing " something.

>

> Now the doctor thinks it is inflammatory arthritis and is going to d/c

> the IVs soon, and start her on antibiotics contintuously. And maybe

> steroids. My mom doesn't want to take steroids, she will only take

> them as a last resort. IN the meantime her arthritis has gotten

> horrendous over the past two years. She went from having red nodules

> on her joints, to having no joints.

>

> Has anyone heard of a case like this, where doctors could not identify

> the type of arthritis, and treatment has not helped.

>

> Also, I am wondering if this is hereditary. Because I started having

> joint pains at 27, then I got pregnant after I turned 28 and the pains

> went away during the fourth month of pregnancy. Now my son is four

> months old, and I think I have full blown arthritis in my fingers and

> toes.

>

> Thanks,

>

>

>

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

>

>

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Guest guest

, it might be helpful to give your mom some articles about low dose

prednisone.  It has a place in the management of RA and there was even a paper

that came out recently (eek, , do you know the one?) that said low-dose pred

is actually bone *sparing* in RA.  Bad things happen if you take high doses for

long periods of time, but many of us have to take low dose for quite a long

time.  Every drug has its trade offs, but encourage her to see that having

inflamed joints is a bad thing and it's important to do whatever it takes to put

on the brakes.  I hope you get that 2nd opinion soon, Kate F

[ ] Re: Please help!

She has an appointment with a doctor in August for a second opinion

(the doc was backed up eight months, she made the appt in jan)! Her

doctor even told her to get a second opinion because she doesn't know

what to do.

One thing to not is that she has not yet tried ANY steroids because

she doesn't want to take them. She will only take them as a last

resort. I would say it is time but thats just my opinion, I don't know

a lot about this. I have had to take low dose steroids before to help

tolerate thyroid meds but I am sure it is different.

> > My mom has unidentifiable arthritis. She has been seeing a

> > reumatologist who says it is one of the most aggressive cases she has

> > ever seen.

> >

> > It is completely destroying her joints. She has no joints left in her

> > index fingers, they are entirely fused together. Doctor has ruled out

> > RA but assumed it was autoimmune and has been using chemo-like IV

> > drugs on her for over a year. Instead of getting better, it has gotten

> > MUCH MUCH worse.

> >

> > Her doc says she only has 3 patients who are like my mom. She has

> > recommended for my mom to get a second opinion, because she doesn't

> > know if she is " missing " something.

> >

> > Now the doctor thinks it is inflammatory arthritis and is going to d/c

> > the IVs soon, and start her on antibiotics contintuously. And maybe

> > steroids. My mom doesn't want to take steroids, she will only take

> > them as a last resort. IN the meantime her arthritis has gotten

> > horrendous over the past two years. She went from having red nodules

> > on her joints, to having no joints.

> >

> > Has anyone heard of a case like this, where doctors could not identify

> > the type of arthritis, and treatment has not helped.

> >

> > Also, I am wondering if this is hereditary. Because I started having

> > joint pains at 27, then I got pregnant after I turned 28 and the pains

> > went away during the fourth month of pregnancy. Now my son is four

> > months old, and I think I have full blown arthritis in my fingers and

> > toes.

> >

> > Thanks,

> >

>

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Guest guest

If you all know of any articles on this subject please let me know

(e.g. how low dose prednisone can benefit RA) My mom usually doesn't

listen to me but if she reads it somewhere else she might listen. I

think she is losing faith because already some of the more aggressive

treatments have been useless.

Thanks,

> > > My mom has unidentifiable arthritis. She has been seeing a

> > > reumatologist who says it is one of the most aggressive cases

she has

> > > ever seen.

> > >

> > > It is completely destroying her joints. She has no joints left

in her

> > > index fingers, they are entirely fused together. Doctor has

ruled out

> > > RA but assumed it was autoimmune and has been using chemo-like IV

> > > drugs on her for over a year. Instead of getting better, it has

gotten

> > > MUCH MUCH worse.

> > >

> > > Her doc says she only has 3 patients who are like my mom. She has

> > > recommended for my mom to get a second opinion, because she doesn't

> > > know if she is " missing " something.

> > >

> > > Now the doctor thinks it is inflammatory arthritis and is going

to d/c

> > > the IVs soon, and start her on antibiotics contintuously. And maybe

> > > steroids. My mom doesn't want to take steroids, she will only take

> > > them as a last resort. IN the meantime her arthritis has gotten

> > > horrendous over the past two years. She went from having red nodules

> > > on her joints, to having no joints.

> > >

> > > Has anyone heard of a case like this, where doctors could not

identify

> > > the type of arthritis, and treatment has not helped.

> > >

> > > Also, I am wondering if this is hereditary. Because I started having

> > > joint pains at 27, then I got pregnant after I turned 28 and the

pains

> > > went away during the fourth month of pregnancy. Now my son is four

> > > months old, and I think I have full blown arthritis in my

fingers and

> > > toes.

> > >

> > > Thanks,

> > >

> >

>

>

>

>

>

>

>

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Guest guest

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Kate,

It's true that prednisone has been shown to have DMARD-like

properties, but, so far, only for early RA.

Chronic use, even at low doses, is associated with myriad side effects

- fracture, osteoporosis, cataracts, diabetes, hypertension, increased

susceptibility to infections such as pneumonia, heart disease, and

skin fragility, to name a few.

I'll re-post that study.

Not an MD

On Tue, Jun 10, 2008 at 8:21 AM, Fair <kalfoley@...> wrote:

> , it might be helpful to give your mom some articles about low dose

> prednisone. It has a place in the management of RA and there was even a

> paper that came out recently (eek, , do you know the one?) that said

> low-dose pred is actually bone *sparing* in RA. Bad things happen if you

> take high doses for long periods of time, but many of us have to take low

> dose for quite a long time. Every drug has its trade offs, but encourage

> her to see that having inflamed joints is a bad thing and it's important to

> do whatever it takes to put on the brakes. I hope you get that 2nd opinion

> soon, Kate F

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  • 1 month later...
Guest guest

I found this article on another cite.

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Hannah%

20Poling,%20Autism%20and%20ME%20CFS.pdf

Well I have CFS and LQT. My son regressed into Autism the day he had

the MMR. Is their something I should be doing, finding out etc. A bit

worried and confused as I didn't realise LQT was connected to CFS or

Autism.

Advice and more info greatly accepted.

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