WHAT THE REAL DEAL?

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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
 		   Posted 11/23/2008 11:28 AM (GMT -6)   
My ANA test was borderline positive.  My Rheumy doubt if its lupus- she think its fibro.  But why would I have a borderline test result??  So I think its probably lupus - (I DON'T KNOW WHAT TO THINK ANYMORE).  I'm 39 and I'm not overweight or anything..but for since I have been having a flare for the past month.. I have had events of sleep apnea (waking up gasping for air). I'm schedule for a sleep study next month. 
 
I was in the hospital last week for dizziness and muscle pain/weakness... MRI"S and CAT SCANS ETC..(NEG).
 
I'M taking Cymbalta, and a med for acid reflux. Motrin as needed.
 
I also have been having balance problems, pains in my ear canal, mucsles etc, vision feels different too.  I have been visiting doctors off and on for 10 years about all of this.  I'm getting stressed and depressed behind it. 
 
Last night.. I felt like I stop breathing for a min and it feel like my left arm and neck went numb (a powerful numb sensation) it lasted for about 15 seconds and then I went back to sleep (might as well, tired of running to the ER every week).  Anyone experience something like this..???
 
ANY FEED BACK WILL BE APPRECIATED.. I'M BECOMING STRESSED BY THE MINUTE.
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Ginny
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Date Joined Feb 2003
Total Posts : 5514
 		   Posted 11/23/2008 11:47 AM (GMT -6)   
Hi KE08,
 
I know how stressful it is to not know what the heck is going.  I battled with this same thing too.  Lots of people in the general population will have a positive ANA and never have any symptoms or problems associated with an autoimmune disease.  They live their entire lives with no health problems, yet they have a positive ANA. 
 
Do you have at least 4 of the 11 criteria for lupus? Here is a link where you can check.  
 
You mentioned the symptoms you're having and honestly, they are classic Fibromyalgia.  Balance problems are huge with Fibro. So are dizziness, acid reflux, muscle pain and weakness.  Sleep problems are also huge with Fibro.
 
I went to countless specialists as well because of the balance and dizziness problems I was having.  Everything always came back normal.  When I finally got to see a GOOD rheumatologist, she explained all my issues were Fibromyalgia related. 
 
I think it's wise that you're getting a sleep study done.  Sleep apnea is serious.  I have many times, experienced severe numbness in my arms or hands, legs.  Again, all Fibro.
 
If your blood tests are repeatedly negative and you don't have any of the classic lupus symptoms, I'd take your rheumy's knowledge and put your mind at ease that this isn't lupus.
 
I hope this helps!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
 		   Posted 11/23/2008 12:40 PM (GMT -6)   
thanks Ginny...I'm not in Fear about lupus (maybe a lil bit). I believe as long as it is treatable than there is hope. My concern is how the numbness woke me up with the sleep apena too. It was a powerful wave of numbness that came down my neck and left arm for about 15 seconds. I'm no stranger to numbnesss..but this was totally different. I don't know what to do..go to the ER??

I'M SITTING HERE TOTALLY DAZED about WHAT HAPPENED LAST NIGHT.
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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
 		   Posted 11/23/2008 12:41 PM (GMT -6)   
Ginny I read in your profile that you had a stroke (sorry)..  Do you think that maybe I had a mild stroke in my sleep (numbness in arm and neck)?
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Ginny
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Date Joined Feb 2003
Total Posts : 5514
 		   Posted 11/23/2008 1:52 PM (GMT -6)   
There's always that possibility it was a mini stroke.  Did you notice any other symptoms at all?  Confusion, loss of vision, hearing, trouble speaking or moving your mouth, headache?
 
When I had my stroke, I had numbness on BOTH sides of my body. Yeah, weird eh.  I thought I was having a migraine headache, so I didn't receive prompt attention.  When I started speaking "gobble-d-gook" to my coworkers, and unable to hear them or see them, we all knew something was wrong and they called 911.  That was about an hour after the first symptoms appeared.  I was left with a seizure disorder.... But nothing else.  I am very lucky.  I was only 28 years old.
 
Do you recall if you were tested for the Anti-phospholipid Syndrome (APS)?  Or the Anti-Cardiolipin Antibodies?  Those are pretty standard blood tests when looking at lupus.  Both those conditions mean that lupus has caused a protein to form in the blood which thickens the blood, putting the person at a risk for a stroke or heart attack.  Another name for APS is Hughes Syndrome (found in people who don't have lupus). I knew I had APS, but a daily aspirin wasn't enough to thin my blood.  I'm on life long blood thinners now.
 
Perhaps a call to your rheumy regarding these tests would be a good idea.  Just find out if they were done, and if so, get the results from her.  I'd also tell your rheumy about the numbness episode you had.  And if you didn't get those blood tests done, that they should give you a requisition to get them completed.  It never hurts to cover all your bases, right!
 
In the meantime, if that happens to you again, call 911.  Better to be safe than sorry. Give them a call tomorrow, while this is all still fresh in your mind.
 
Let us know how you make out, okay,
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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KE08
Regular Member


Date Joined Nov 2008
Total Posts : 92
 		   Posted 11/23/2008 1:57 PM (GMT -6)   
Thanks again..no all my motor and cognotive skills are fine..didn't notice anything but the numbness. I will check with my doctor about the blood tests. and I will keep you infomed.

((hugs))
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Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
 		   Posted 11/23/2008 2:02 PM (GMT -6)   
You're welcome KE08.  I'll be eager to hear what you have learned.  Have a nice day today and try (although this is much easier said than done) to not think to much into this until you have talked to your doctor. It might be nothing at all.  We can hope for that!
 
(((hugs))) for you too!
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

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Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
 		   Posted 12/1/2008 10:20 AM (GMT -6)   
Hey KEO8 
 
 
I have had these same symptoms.  Vertigo was diagnosed by my doctor and he said that once we are diagnosed, it is probably going to be a medicine that I take for life.  Meclazine is what I take.  Muscle weakness, and muscle pain.  My older doctor diagnosed me with Fibromyalgia, but just like Lupus, the newer doctors tend to disbelieve that Dr. Marlow diagnosed me incorrectly.
 
I know it is hard to be listened to by some.  Sometimes I think that some doctors do not hear our words at all.  they make thier own mind.  I say keep telling them the same symptoms if you can.  I tend to nor remember stuff when I get in front of a doctor.  i do not have sleep apnia.  my mother had this.  I do wake up severl times at night.  I have slept for many years of waking up several times a night.  and they say it is not a restful night when one can acutally sleep all night long.
 
Ginny gave you the best advice anyone can.  I want to give up to sometimes.  Just taking my rounds of my many doctors, I want to simply go to any doctor at all, and let nature take its course.
 
Hope your day will be better today than it was for you tomorrow.
hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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