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leapyear
Regular Member


Date Joined Oct 2014
Total Posts : 61
   Posted 3/30/2015 7:56 PM (GMT -6)   
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)


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/30/2015 10:06 PM (GMT -6)   
Sounds like fibromyalgia to me. But everything else must be ruled out to be diagnosed. Find a different rheumatologist who will do deeper testing.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

leapyear
Regular Member


Date Joined Oct 2014
Total Posts : 61
   Posted 3/31/2015 1:00 AM (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
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/31/2015 11:24 AM (GMT -6)   
Leapyear,

Sounds like something I could have written. Was diagnosed with undifferentiated mixed connective tissue disease. Had a speckled ANA as well.

As far as the fibro suggestion, my understanding is that fibro can be pretty debilitating, has exact tender points, and should react to some form of gabapentin. My Rheumy said a burning sensation is not typically associated with fibro.

leapyear
Regular Member


Date Joined Oct 2014
Total Posts : 61
   Posted 3/31/2015 4:58 PM (GMT -6)   
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!

rockthecasbah121
Regular Member


Date Joined Mar 2015
Total Posts : 23
   Posted 3/31/2015 9:19 PM (GMT -6)   
UMCT- It's similar to lupus. Just not as severe. I've been sick for about 7 or 8 months. Was just officially diagnosed and put on plaquenil on like three weeks ago.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/1/2015 1:03 AM (GMT -6)   
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
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

leapyear
Regular Member


Date Joined Oct 2014
Total Posts : 61
   Posted 4/1/2015 10:50 PM (GMT -6)   
Hi Barbara Lee...

My titer was like 1:320 speckled. My i ask why your daughter had an ana test at 7 yrs old? I'm always worried my kids will inherit my wonderful health!!!

dashlink675
Regular Member


Date Joined Nov 2013
Total Posts : 21
   Posted 4/3/2015 7:41 AM (GMT -6)   
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!

leapyear
Regular Member


Date Joined Oct 2014
Total Posts : 61
   Posted 4/3/2015 3:49 PM (GMT -6)   
Does the UCTD stand or is that just what they call it before it develops into one of the actual named diseases? Or can you just have UCTD forever? What is the treatment for UCTD?
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