Please does anyone recognize any of this?

[Guest guest]

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