complicated-autoimmune/connective tissue?

[Debra Van Ness RN]

Just to ask someone a few questions when you have time. I am a nurse. But I am also a patient. I have had an illness for several years. Was diagnosed with fibromyalgia. I think more is going on here.

Symptoms:
Widespread pain daily- severe at times
Pain around the joints in addition to pain in all other areas
Stiffness very severe in the mornings-less in the afternoons
constant exhaustion almost debilitating not fixed by sleep (not sleep apnea)
numbness/tingling/burning nerve pain in fingers on both hands at times
occasional electrical shock sensations in the fingers/hands
swelling of fingers/joints in fingers
dropping things alot/widespread muscle weakness
finger joints getting crooked to some extent curving toward 5th digit
severe neck pain and shoulder pain with occasional inflamation of shoulders
loss of some ROM in shoulder joints and neck
Pain also in all other parts of back daily
tender points as addressed with fibromyalgia
difficulty with cognitive processes such as concentration/memory
clouded thought processes-slowed at times
coordination/balance problems at times
involutary movement recent onset- occasional
muscle twitches anywhere at anytime
difficulty emptying bladder
bowel problems constant- constipation

Original blood work drawn several years ago had neg ANA. neg rheumatoid panel.
Neg for thyroid problems. Elevated Sed rate.
Just had more labs drawn..no results yet.

Could I have Lupus with a negative ANA? And if I had labs when not in a flare, could the ANA or rheumatoid panel be a negative? Or could I have rheumatoid with a neg rheumatoid panel?

The doctor keeps looking at me and saying "scleroderma" because of the appearance of my hands. Don't have many symptoms of scleroderma at all.
Do have occasional swallowing difficulties where I choke on liquids which is becoming more common.

Thanks so much,
Debra Van Ness RN

[Tom Plamondon PA-C]

Hello,
Thanks for writing in.

The hands (ulnar drift) and morning stiffness sound a lot like rheumatoid arthritis while the multisystem problems bring the possiblity of lupus closer to the forefront.

Some SLE and RA patients have negative labs findings but the sensitivity of ANA for lupus is 98 or 99% so a low false negative rate. For RA, the RF sensitivity is low but gradually increases as the disease progresses. Adding anti-CCP to RF raises sensitivity but still can get many false negatives.

It usually recommended to also check CBC, CRP, and sed rate. May look at hand xrays too - for diagnostic and treatment reasons.

From your report, I think RA should be considered and possibility of concomitant connective tissue disorder or neurological problem (especially condidering the loss of congnition, fasciculations in the arms, weakness, etc.). I think an EMG, MRI of the neck and brain would be wise.

Keep us posted.

[Debra Van Ness RN]

Thanks so much for the tips. I have recently had the cbc, bmp, sed rate, rheumatoid panel, and ANA redrawn again a few days ago. Originally I had this all drawn about 5 years ago when I went screaming in pain for a diagnosis. My doc ran all that lab work and the only thing that came back abn. was the Sed rate. However, I was actually a few days past the major part of that flare. I will see what shows now.
I am unfortunately uninsured middle class America and have no help with medical bills. I pay every month cash out of pocket for a doc visit and my medications so I can continue to function working a full time job and raising two young children. (at 44 and chronically ill with something I cannot identify besides FMS/CFS).

Thanks so much for writing me. I so appreciate it. I have so many puzzle pieces here that need to be put together and I realize that is difficult without some MRI's, CT's, and some very uncommon blood work also. Would like to have some viral panels run and some heavy metal levels when I can cough up the cash.

How much I appreciate your input.

Debra Van Ness RN

[Tom Plamondon PA-C]

Hello,

Some of the alternative medicine folks talk about detoxification (e.g heavy metals) and some advocate high anti-oxidant drinks like the Go-chi or Ningxia Red juices for relief with CFS. Most reports are anecdotal.

Take care.