Hello from a Newbie

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Hello all.

Looking for a little advice:

I've been a member for a while, but not written. I read some, but to

be honest and overwhelmed at present with symptoms, so brain fog keeps

me away at times.

Rheumy thinks Lupus or Sjogren's, but leaning toward Lupus.

ANA always positive, Profile shows some antibodies in all tests, but

miniscule. Whatever the " A " test is for Lupus/Sjogren's, I'm

positive, but the " B " test says negative.

25 yrs ago (dark ages, not many tests etc) I got the Lupus Dx. Every

time I felt bad they wanted to give steroids until I quit taking them.

About 10 yrs ago I was told no Lupus. I dont' know what tests Dx'd

me and un-Dx'd me.

I quit telling docs but felt horrible and figured it must be something

else.

Got Graves (not antibody tested tho) and had an ablation done (huge

mistake). Mentioned Lupus to another doc about 5 yrs ago. ANA

positive again. He refers to a Rheumy. I got too sick to drive 3 hrs

to get there. I didn't go.

Finally mentioned Lupus to my endo and he does another ANA- positive.

Profile says negative. He says no Celiac no Lupus. Last December I

begged for and finally got vitamin tests and found I was deficient in

many B's. Began supplementing. Felt better for a while, then

headaches came back, but not so bad as before.

I got another rash, but this one pretty bad in a v-shape on my chest,

so asked endo since it wouldn't go away. It came when I went to a

tanning bed to get ready for a dream trip. (I know, I know, not the

best thing I could have done, but if no lupus, I thought a couple

times gently wouldn't hurt) Another ANA- positive. Profile shows this

" A " as positive.

Sent on to Rheumy, still with rash (since March) which flares with any

sunlight, which I have been ignoring. He thinks it's not possible to

have Lupus all this time and not be on Lupus meds. Interrupts, says

I've been perfectly healthy all this time, so likely it's false.

Doesn't look at my darned info I spent all that time writing up for

him. duh.

Retest is same as initial test. Rheumy still hasn't called me, but

endo gave me the results.

I have several things going on- chronic and debilitating intractable

migraine, cluster/autonomic cephalgias. Neuro is thinking possible

encephalopathy related to thyroid, but unsure. (I dont' think he

remembers the past positive ANA stuff). Thyroid imbalance,

osteoporosis (slowly healing), vitamin deficiencies, chronic diarrhea

(6-8 yrs), Dystonia (a movement disorder causing spasms throughout my

body that resemble epilepsy), other minor stuff. I am dry, but not as

dry as others I have read. It was chalked up to my radiation, then to

vitamin deficiencies. It did improve with supplements to a degree.

The joint pain is very bad. The headaches are bad enough my hubby

fears I will someday choose to " find another way out " IYKWIM. He

doesn't understand how I can live the way things are now. I am mostly

a positive person, but am experiencing some pretty wild swings since

getting the vitamins treated. This is disturbing, but I'm afraid to

mention to Neuro because I am not depressed and don't want any

anti-depressants to cover up something that needs to be healed.

The head pain got so bad I was hired as a web researcher for Migraine.

You can find info about me (if interested)

http://community.wegohealth.com/profile/EllenSchnakenberg

When Rheumy calls I want to be prepared. When in last he neither

listened nor asked much. Maybe because he didn't know anything and

wanted to test from the start? (guessing and trying to stay positive).

He mentioned Plaquenil. My mom is on this and it has stopped her

muscle spasms and made her feel much better. (she is not Dx'd-- her

ANA's are neg. This is for Sarcoidosis) If it would get rid of the

spasms, you'd be hard-pressed to find a way to keep me off it, despite

my feelings it is again not addressing the issue at hand.

I am tempted to try the plaquenil because I need to be out of pain.

This is big pain, not the little wimpy stuff like broken bones or

child birth. I am able to take little if any pain killers. Indocin

is anti-inflammatory (as are the B12 shots) and help, but it wears off

and I'm back where I started. Steroids are great, but I can't take

them, nor do I want to.

Anybody with any advice? I would truly love to hear it.

Thanks all

Ellen in Missouri