rescue me from limboland

[11225e]

Hello. I've been in Limboland for 15 years. Here's my history:

Hep A about age 8
Migraines with aura started soon after - still active
Herpes B
Miscarriage about age 30
Ankylosing Spondylitis about age 32
about age 35 started experiencing: open skin lesions, ski highposi tive ANA, extreme fatigue, cognitive problems, paresthesias, mucosal ulcers, severe muscle aches, hair loss, Raynaud's syndrome, muscle and bruising some minor joint pain, constant UTIs, hot flashes (or fevers - dunno), chills)
to top it off, I have sever OCD - not the behaviors, just the invasive disturbing thoughts

my latest tests show the ever-faithful high ANA, and now a consistant high SMA (smooth muscle antibody) and I just had an MRI which seems ok. it says:
trace periventricular white matter T2 hyperintensity - I'm thinking that's the migraines

so for 15 years my doctors say I MIGHT have Lupus, or I might not, but thet don't know what. all I know is that I have NO enegry and my muscles hurt, and sometimes my hair falls out, and many times I have sores in my mouth, and I can't think straight or remember anything.

now age 49 - am I just getting old?

if ANYONE can give me a CLUE, I would be so thankful!!!

E

[sllowe]

Hi there,

Welcome! Well, I'd not chalk it up to getting old, that is for sure. 49 is hardly old.

Your symptoms do not scream MS to me.  But, what type of Dr./specialist ran this workup on you? A Rheumy?

Sounds like it's time to pin the Dr. to the mat so to speak, or move on for a 2nd opinion.. You've got a great start of a timeline here in terms of test results. Can you put some dates to this? Then, list your symptoms as well?

Would look something like this (see our health page too on timelines):

1969: Hep A about age 8 (list the result)
1970: Migraines with aura to Present

DATE:  Herpes B
Miscarriage about age 30
Ankylosing Spondylitis about age 32

DATE: age 35 started experiencing: open skin lesions, ski highposi tive ANA, extreme fatigue, cognitive problems, paresthesias, mucosal ulcers, severe muscle aches, hair loss,
DATE: Raynaud's syndrome (add who dx'd)
           symptoms: muscle (what), bruising, minor joint pain, UTIs, hot flashes (feels like
           fever or chills

If your OCD is in check and you are doing well w/treatment/therapies decide if it's important to have in your timeline. Unfortunately, there are Drs out there who will chalk almost anything up to disorders of this nature. We see a lot of that here.

Have you been to an infectious disease Dr.? I'm not sure where to steer your toward, and hoping others will send along their thoughts.  Hope we can help - and please know now that you've found us, your not alone.

Be well,
Shell

[ShockedToday]

I wish I could give you some answers.  I'm currently in a similar situation and I know how frustrating it can be.  Hopefully someone will come along that can help you.

Take Care!