Re: Please does anyone recognize any of this?

[Guest guest]

Heidi,

I'm sorry to read that you aren't doing well and are having trouble

getting a diagnosis.

If at all possible, I recommend going to somewhere such as the Mayo

Clinic in Rochester, MN; s Hopkins in Baltimore, MD; or the

Hospital for Special Surgery in NY, NY for a diagnosis.

If you are in or near California, Dr. Wallace is a lupus expert

worth a try.

http://www.hss.edu/rheumatology.asp

http://www.mayoclinic.org/rheumatology-rst/

http://www.hopkinsmedicine.org/rheumatology

http://www.danieljwallace.com/

Not an MD

On Fri, Aug 27, 2010 at 4:54 PM, peanutbruddaandjelly

<heidihogan_rep84@...> wrote:

> I'm new to this group (brand spanken)but my brother in law told me about it

and that it's helped him so.....heres my first attempt. A bit lengthy but

appreciate the input. I'm reaching here.

>

> I was first stricken with my condition when I became pregnant with my last

child who is now 4 and a half. I couldn't move, walk, sleep. I was in constant

agony and when I would be assisted to the bathroom, i would bleed. My OBGYN was

concerned and placed me on bed rest for my entire pregnancy. I had a lot of

venal issues with swelling of the arteries and veins in the lower regions which

burned and ached constantly. Numbness and tingling in the back, hips and legs

etc. My OB said it was all due to the pregnancy hormones " softening " things up

to prepare for childbirth. I should be 100% once I deliver....yeah right!!

Couldn't even walk after delivery for almost 2 months. Felt like a broken

pelvis. Then the pain in the shoulders, hips, neck and back worsened. Stiffness

set in and excrutiating burning and gnawing joint and muscle pain followed.

Wrist and finger pain and easily breaking fingers. Now twisted middle fingers.

Finger nails cracking from cuticle down and lifting. Fingers swell like sausages

and always red and purple. Toes turn bluish purple at the nails. Face swells

every morning with red rash across cheeks with white streaks down from eyes to

jaw. Mouth, nose and ear sores. I gel when I sit or stand too long. It hurts to

lie down. Back, shoulders and hips. Numbness in extremities. Periodic facil

paralysis on one side of face with droop. Not stroke, Checked every time. No

answer for it.

>

> I went to so many doctors trying to find help and every one of them said that

since I had just had a baby, it was depression. " Depression causes pain " they'd

say. I was prescribed Celexa...which almost caused me to committ suicide.

Luckily, i'm an extremely sensible person so I knew that those thoughts were not

my own. I dropped the Celexa immediately.

>

> I had an MRI of the left wrist due to extreme pain and they found cysts. I

opted to have them removed, and during the excision, they discovered bright

fiery red tissue. They scooped it out and off to Pathology with it. Sure enough,

findings were " severe chronic inflammatory condition with a LUPUS LIKE

presentation. However, my blood work NEVER EVER EVER showed any of the

inflammation my body was presenting. Sed rate " normal " ANA " normal " Westergen

" normal. " No matter the test...I passed it with flying colors! For once I was

actually hoping to fail one so that SOMEONE would believe me. Problem? I looked

perfectly fine. But I was dying inside.

>

> My Rheumy finally claimed that I had a Spondylo Arthropathy (Ankylosing

Spondylitis) along with Fibro, GERD and Possible Barretts disease. He was

suspicious of Lupus but didn't want to DX it without all the markars and a

positive ANA. But my case is so much like my mothers at early onset that it's

scary. My Rheumy is also my mothers. Little History, My mother was DX'd or

MIS-Dx'd with RA when I was 14 years old. I'm 36 with three babies now and she

is now in final stage SLE but has it all...Discoid, CNS, Blood...it's all there.

She has over 30 different conditions now and has been on life support for about

a month now. Second time since January. She's 61.

>

> I have a very long list of symptoms which my Rheumy now feels (cements the

LUPUS theory) yet no positive ANA??? Recently, blood work showed elevated blood

sugar and Negative TSH and T4 but high positive Thyroglobulin. Also, a weak

positive ANA. I'm so confused. Any of this sound familiar to anyone? goin on 5

years without an seemingly accurate DX and I don't want to waste time.

>

> Meds I've already been on;

> **MTX with Folic Acid (7 pills every Tuesday)> Sent me into fits of

excrutiating abdominal pain and burning where all I could do was scream. Only

thing MRI showed was " enlarged intestines " which didn't seem to bother them.

These ER trips would take place about once a week and I would have to be knocked

out (Diladed)-sp? before the pain would leave me. Mother suffers the same exact

fits with no findings.

> **Prednisone (5mg starting to 20mg ending daily) up to 40 mg for flares.

Almost killed me. Aparently I'm allergic. Face swells and turns purple (bells

palsey type episodes) blood pressure elevates and I get hot from the chest up.

Loss of peripheral vision in right eye for at least a week with deformation of

the eyeball due to excess fluid build up in the eye. Stopped the prednisone.

> **Vicodin and Motrin are usual rx for pain. Can't handle the vicodin so Motrin

it is. Doesn't seem to work yet I have serious issues with narcotic drugs. Can't

stay awake etc.

> **On my own I take 1200 mg. of Omega 3 Fish Oil suppliments and Centrum womens

Multi Vitamines a day.

> **Little over a week ago, due to worsening symptoms of pain and stiffness I

was put on Arava and Plaquenil. I'm goin down fast. Spirits were great the first

week with some pain and stiffness but as of today, I can feel my system taking a

beating and my defenses falling. Broke out with cold sores on the top lip over

night and that hasn't happened since the MTX. Where it seemed to give me

unending energy when I first started the Arava, I now struggle with severe

fatigue, pain and stiffness only one week later. Burning pain in shoulders and

weakness and charlie horses in all my muscles. Can't even lift my arms! Does

this stuff really take you down that hard? I know it's been a lot of reading,

but I'm sure you all remember what it was like waiting for that DX. I really

need some input. Thanks every one.

> Heidi

[Guest guest]

Good grief, Heidi! I can't believe you've been going through all of this for 5

years without a definitive diagnosis! You need to get a new Rheumy - you deserve

proper treatment and this one doesn't sound like he/she knows what they're

doing. Also get a pain management doctor. There are a LOT of different pain

meds/patches/lotions that you can use. You shouldn't have to live like this.....

Doreen

--- In , " peanutbruddaandjelly " <heidihogan_rep84@...>

wrote:

I'm new to this group (brand spanken)but my brother in law told me about it and

that it's helped him so.....heres my first attempt. A bit lengthy but appreciate

the input. I'm reaching here.

I was first stricken with my condition when I became pregnant with my last child

who is now 4 and a half. I couldn't move, walk, sleep. I was in constant agony

and when I would be assisted to the bathroom, i would bleed. My OBGYN was

concerned and placed me on bed rest for my entire pregnancy. I had a lot of

venal issues with swelling of the arteries and veins in the lower regions which

burned and ached constantly. Numbness and tingling in the back, hips and legs

etc. My OB said it was all due to the pregnancy hormones " softening " things up

to prepare for childbirth. I should be 100% once I deliver....yeah right!!

Couldn't even walk after delivery for almost 2 months. Felt like a broken

pelvis. Then the pain in the shoulders, hips, neck and back worsened. Stiffness

set in and excrutiating burning and gnawing joint and muscle pain followed.

Wrist and finger pain and easily breaking fingers. Now twisted middle fingers.

Finger nails cracking from cuticle down and lifting. Fingers swell like sausages

and always red and purple. Toes turn bluish purple at the nails. Face swells

every morning with red rash across cheeks with white streaks down from eyes to

jaw. Mouth, nose and ear sores. I gel when I sit or stand too long. It hurts to

lie down. Back, shoulders and hips. Numbness in extremities. Periodic facil

paralysis on one side of face with droop. Not stroke, Checked every time. No

answer for it.

I went to so many doctors trying to find help and every one of them said that

since I had just had a baby, it was depression. " Depression causes pain " they'd

say. I was prescribed Celexa...which almost caused me to committ suicide.

Luckily, i'm an extremely sensible person so I knew that those thoughts were not

my own. I dropped the Celexa immediately.

I had an MRI of the left wrist due to extreme pain and they found cysts. I opted

to have them removed, and during the excision, they discovered bright fiery red

tissue. They scooped it out and off to Pathology with it. Sure enough, findings

were " severe chronic inflammatory condition with a LUPUS LIKE presentation.

However, my blood work NEVER EVER EVER showed any of the inflammation my body

was presenting. Sed rate " normal " ANA " normal " Westergen " normal. " No matter the

test...I passed it with flying colors! For once I was actually hoping to fail

one so that SOMEONE would believe me. Problem? I looked perfectly fine. But I

was dying inside.

My Rheumy finally claimed that I had a Spondylo Arthropathy (Ankylosing

Spondylitis) along with Fibro, GERD and Possible Barretts disease. He was

suspicious of Lupus but didn't want to DX it without all the markars and a

positive ANA. But my case is so much like my mothers at early onset that it's

scary. My Rheumy is also my mothers. Little History, My mother was DX'd or

MIS-Dx'd with RA when I was 14 years old. I'm 36 with three babies now and she

is now in final stage SLE but has it all...Discoid, CNS, Blood...it's all there.

She has over 30 different conditions now and has been on life support for about

a month now. Second time since January. She's 61.

I have a very long list of symptoms which my Rheumy now feels (cements the LUPUS

theory) yet no positive ANA??? Recently, blood work showed elevated blood sugar

and Negative TSH and T4 but high positive Thyroglobulin. Also, a weak positive

ANA. I'm so confused. Any of this sound familiar to anyone? goin on 5 years

without an seemingly accurate DX and I don't want to waste time.

Meds I've already been on;

**MTX with Folic Acid (7 pills every Tuesday)> Sent me into fits of excrutiating

abdominal pain and burning where all I could do was scream. Only thing MRI

showed was " enlarged intestines " which didn't seem to bother them. These ER

trips would take place about once a week and I would have to be knocked out

(Diladed)-sp? before the pain would leave me. Mother suffers the same exact fits

with no findings.

**Prednisone (5mg starting to 20mg ending daily) up to 40 mg for flares. Almost

killed me. Aparently I'm allergic. Face swells and turns purple (bells palsey

type episodes) blood pressure elevates and I get hot from the chest up. Loss of

peripheral vision in right eye for at least a week with deformation of the

eyeball due to excess fluid build up in the eye. Stopped the prednisone.

**Vicodin and Motrin are usual rx for pain. Can't handle the vicodin so Motrin

it is. Doesn't seem to work yet I have serious issues with narcotic drugs. Can't

stay awake etc.

**On my own I take 1200 mg. of Omega 3 Fish Oil suppliments and Centrum womens

Multi Vitamines a day.

**Little over a week ago, due to worsening symptoms of pain and stiffness I was

put on Arava and Plaquenil. I'm goin down fast. Spirits were great the first

week with some pain and stiffness but as of today, I can feel my system taking a

beating and my defenses falling. Broke out with cold sores on the top lip over

night and that hasn't happened since the MTX. Where it seemed to give me

unending energy when I first started the Arava, I now struggle with severe

fatigue, pain and stiffness only one week later. Burning pain in shoulders and

weakness and charlie horses in all my muscles. Can't even lift my arms! Does

this stuff really take you down that hard? I know it's been a lot of reading,

but I'm sure you all remember what it was like waiting for that DX. I really

need some input. Thanks every one.

Heidi

[Guest guest]

Heidi, I'm so sorry to hear of your situation. You have great advice to see a

specialty hospital like Mayo. Here in the Midwest we also have which is

superb. The facial paralysis could be Bells Palsy which is more common in

pregnant women. My friend has severe lupus and sometimes she turns ANA negative

but she is always ENA positive. You really need to see an expert asap. My

gfriend was dx at Hopkins after Walter told her the lupus rash on her lady

parts was herpes (and no culture!!).

Keep us posted and feel better, Kate F

Sent from my iPhone

On Aug 27, 2010, at 9:05 PM,

<Rheumatoid.Arthritis.Support@...> wrote:

> Heidi,

>

> I'm sorry to read that you aren't doing well and are having trouble

> getting a diagnosis.

>

> If at all possible, I recommend going to somewhere such as the Mayo

> Clinic in Rochester, MN; s Hopkins in Baltimore, MD; or the

> Hospital for Special Surgery in NY, NY for a diagnosis.

>

> If you are in or near California, Dr. Wallace is a lupus expert

> worth a try.

>

> http://www.hss.edu/rheumatology.asp

>

> http://www.mayoclinic.org/rheumatology-rst/

>

> http://www.hopkinsmedicine.org/rheumatology

>

> http://www.danieljwallace.com/

>

>

> Not an MD

>

> On Fri, Aug 27, 2010 at 4:54 PM, peanutbruddaandjelly

> <heidihogan_rep84@...> wrote:

> > I'm new to this group (brand spanken)but my brother in law told me about it

and that it's helped him so.....heres my first attempt. A bit lengthy but

appreciate the input. I'm reaching here.

> >

> > I was first stricken with my condition when I became pregnant with my last

child who is now 4 and a half. I couldn't move, walk, sleep. I was in constant

agony and when I would be assisted to the bathroom, i would bleed. My OBGYN was

concerned and placed me on bed rest for my entire pregnancy. I had a lot of

venal issues with swelling of the arteries and veins in the lower regions which

burned and ached constantly. Numbness and tingling in the back, hips and legs

etc. My OB said it was all due to the pregnancy hormones " softening " things up

to prepare for childbirth. I should be 100% once I deliver....yeah right!!

Couldn't even walk after delivery for almost 2 months. Felt like a broken

pelvis. Then the pain in the shoulders, hips, neck and back worsened. Stiffness

set in and excrutiating burning and gnawing joint and muscle pain followed.

Wrist and finger pain and easily breaking fingers. Now twisted middle fingers.

Finger nails cracking from cuticle down and lifting. Fingers swell like sausages

and always red and purple. Toes turn bluish purple at the nails. Face swells

every morning with red rash across cheeks with white streaks down from eyes to

jaw. Mouth, nose and ear sores. I gel when I sit or stand too long. It hurts to

lie down. Back, shoulders and hips. Numbness in extremities. Periodic facil

paralysis on one side of face with droop. Not stroke, Checked every time. No

answer for it.

> >

> > I went to so many doctors trying to find help and every one of them said

that since I had just had a baby, it was depression. " Depression causes pain "

they'd say. I was prescribed Celexa...which almost caused me to committ suicide.

Luckily, i'm an extremely sensible person so I knew that those thoughts were not

my own. I dropped the Celexa immediately.

> >

> > I had an MRI of the left wrist due to extreme pain and they found cysts. I

opted to have them removed, and during the excision, they discovered bright

fiery red tissue. They scooped it out and off to Pathology with it. Sure enough,

findings were " severe chronic inflammatory condition with a LUPUS LIKE

presentation. However, my blood work NEVER EVER EVER showed any of the

inflammation my body was presenting. Sed rate " normal " ANA " normal " Westergen

" normal. " No matter the test...I passed it with flying colors! For once I was

actually hoping to fail one so that SOMEONE would believe me. Problem? I looked

perfectly fine. But I was dying inside.

> >

> > My Rheumy finally claimed that I had a Spondylo Arthropathy (Ankylosing

Spondylitis) along with Fibro, GERD and Possible Barretts disease. He was

suspicious of Lupus but didn't want to DX it without all the markars and a

positive ANA. But my case is so much like my mothers at early onset that it's

scary. My Rheumy is also my mothers. Little History, My mother was DX'd or

MIS-Dx'd with RA when I was 14 years old. I'm 36 with three babies now and she

is now in final stage SLE but has it all...Discoid, CNS, Blood...it's all there.

She has over 30 different conditions now and has been on life support for about

a month now. Second time since January. She's 61.

> >

> > I have a very long list of symptoms which my Rheumy now feels (cements the

LUPUS theory) yet no positive ANA??? Recently, blood work showed elevated blood

sugar and Negative TSH and T4 but high positive Thyroglobulin. Also, a weak

positive ANA. I'm so confused. Any of this sound familiar to anyone? goin on 5

years without an seemingly accurate DX and I don't want to waste time.

> >

> > Meds I've already been on;

> > **MTX with Folic Acid (7 pills every Tuesday)> Sent me into fits of

excrutiating abdominal pain and burning where all I could do was scream. Only

thing MRI showed was " enlarged intestines " which didn't seem to bother them.

These ER trips would take place about once a week and I would have to be knocked

out (Diladed)-sp? before the pain would leave me. Mother suffers the same exact

fits with no findings.

> > **Prednisone (5mg starting to 20mg ending daily) up to 40 mg for flares.

Almost killed me. Aparently I'm allergic. Face swells and turns purple (bells

palsey type episodes) blood pressure elevates and I get hot from the chest up.

Loss of peripheral vision in right eye for at least a week with deformation of

the eyeball due to excess fluid build up in the eye. Stopped the prednisone.

> > **Vicodin and Motrin are usual rx for pain. Can't handle the vicodin so

Motrin it is. Doesn't seem to work yet I have serious issues with narcotic

drugs. Can't stay awake etc.

> > **On my own I take 1200 mg. of Omega 3 Fish Oil suppliments and Centrum

womens Multi Vitamines a day.

> > **Little over a week ago, due to worsening symptoms of pain and stiffness I

was put on Arava and Plaquenil. I'm goin down fast. Spirits were great the first

week with some pain and stiffness but as of today, I can feel my system taking a

beating and my defenses falling. Broke out with cold sores on the top lip over

night and that hasn't happened since the MTX. Where it seemed to give me

unending energy when I first started the Arava, I now struggle with severe

fatigue, pain and stiffness only one week later. Burning pain in shoulders and

weakness and charlie horses in all my muscles. Can't even lift my arms! Does

this stuff really take you down that hard? I know it's been a lot of reading,

but I'm sure you all remember what it was like waiting for that DX. I really

need some input. Thanks every one.

> > Heidi

>