silently creeping

Hi all....

So I have been creeping numerous boards for a while now...hoping someone can have some input...history:
Sept 14 both arms started tingling...falling asleep completely at night
same thing started with legs
muscle spasms
body vibrations while sleeping (weird)
dry eyes
burning muscles with little to no excertion - mainly thighs...somedays biceps - like I worked out too hard (but didn't)
memory - gone most of the time...very frustrating
small tremble with hands
very sensitive to pain now...like a small smack from my 3 year olds hurts really bad!
sometimes elbows hurt...sometimes behind knees hurt...just depends...over by my liver hurts...

Went to rhuemy...had a positive speckled ana with a low titer so it was like...your fine nothings wrong with you...
started eating better, taking supplements...some issues have gotten better..but the worse is the burning pain

Any thoughts?

Post Edited (leapyear) : 3/30/2015 6:59:11 PM (GMT-6)

Hi Joy...I've seen your posts in that forum too...lol...and I thought that too...but that dang blood test keeps bringing me back to it being something else!

Rockthecasbah121 -

So what is your diagnosis? And what does it mean? and treatment? When were you diagnosed and how are you doing now? Thanks for the response!

Leapyear,

I've had lupus a really long time as well as fibro and a slew of other things. You mentioned that your titer was low, do you know what the number is? As you know there's not a specific blood test for lupus and it can take a very long to be DX'd with the disease. It took my military doctors 13 years before the finally agreed that I had lupus and began treatment.

You mention the burning muscles and that's classic fibro symptoms. My daughter has had a positive ANA test since she was 7 years old. She's now 22 and her titer is like 1:640. She, also has one of the antibodies for MCTD, but still hasn't been told she has either MCTD or Lupus. She just doesn't present with enough symptoms for a DX. Sometimes, folks can have a positive ANA and have no auto immune disease. Not saying, that you don't but, you can have one w/o ever having an issue.

Have you been to the lupus foundation website? They list the 11 symptoms of lupus and you Must have 4 of the 11 symptoms to get a DX from a Rheumy. If you're not happy with the Rheumy you've seen, I'd suggest you get a second opinion. I hope for your sake you don't have this terrible disease. Wishing you the best and hope you start feeling better soon.

Hugs,
Barbara

Hmm I would definitely get a second opinion leapyear. It seems odd to me that your rheumy didn't even talk to you about fibromyalgia with your symptoms. I don't know how your symptoms fit into the 11 Lupus criteria, but if you have any of those symptoms I think the ANA is worth considering. I'm not saying you do or don't have anything, but if you're in pain it is definitely worth exploring further!

When I first had symptoms my ANA was 1:80 and my doctor said there was nothing to worry about, after a few years and developing more symptoms my ANA went up to 1:640. I still don't have everything to confirm a Lupus diagnosis 100% but I have been diagnosed and treated for Undifferentiated Connective Tissue Disease (similar to rockthecasbah). I've probably seen well over 30 doctors in the past 5 years or so and if I've learned anything it is that there are a lot of bad ones out there!