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Old 01-23-2009, 02:38 PM   #1
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Join Date: Jan 2009
Location: Connecticut
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Deedal HB User
APS, Lupus, MS?

Hi there,
I'm new here and have been enjoying reading the wonderful advice and help that's been given out. What a super group of people.
I have some very similar symptoms and blood works results as some of the current members and am hoping to get a clear view of what's happening with me.
After 2 discetomies in Oct. 2001 and again in Jan 2002 I began to get more and symptomatic above and beyond the fixes that had been done. I began to lose feeling in my right foot, developed chronic pain that encompassed my entire body,weakness in hands, my right leg gives out and right hand resting tremors. All of these symptoms gradually appeared and it's over 6 years of docs, Lahey Clinic in Mass and so on. Also a brain lesion that is monitored yearly.There is a history of MS on the maternal side. I've had 2 positive ANAs which I assume can change is not a firm Lupus diagnosis?
I have recently changed PC's and was sent to a Pain Management Doc. She's fabulous. I've been on Neurontron, Vicodin for 5 yrs or so and a few other pain med I can't recall at this time with no real results. I am currently on 1 mg of Dilaudid 3 X a day. I was getting 1 mg per MRA/MRI yearly in order to remain still long enough for the scans and it seemed to be the only med. that helped relieve some pain without interfering with my thought process. I was put on Lyrica two years ago and am being slowly weeded off of that per my PC's suggestion. That's where my meds are at this time.
This new Pain Management doc sent to a rheumatologist that she felt thought out of the box, was good and could help figure out what was going on. He has begun but, he's takes on a good deal of patients and my question time is a little more limited than I wish it was.
We had 21 vials of blood drawn and he 23 tests. We have multiple positive antiphospholipids.. He mentions APL/APS a good deal but seems to be saying that he's not conclusive until it's reached a symptom point even though he believes the lesion may have been a prior stroke. That was first for me to hear in 5 plus years it's been showing on the MRI. I have my blood results and I was hoping someone might be able to tell me what they mean in layman's terms. He wants me to begin Plaquenil which I am batting around in my head. It appears from my visit yesterday and my daughter in laws interpretation that he wants me to go on Plaquenil to try to reduce the effects the antiphospholipds can have. So here goes:

Phosthatidylser 1gm Avg: 16 Mine: 34
Anticardiolipin(Cardiolipin) 1 gg -23 25
1gm -11 23
Beta2 Glycoprotein (B2gpI) 1gm -20 57
Glucose Sugar -100 108
Lupus Drvtt 0-31 33 HR
ANA positive

Thank you in advance! I look forward to be part of this great group.

Dee

Last edited by Deedal; 01-26-2009 at 02:43 AM.

 
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Old 01-25-2009, 09:04 AM   #2
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Join Date: Feb 2004
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: APS, Lupus, MS?

Deedal, hello & a great big welcome! Have you seen the "sticky posts" (permanent info posts) at the top of the thread list? There are several on SLE & one on APS.

I really recommend a trip to your library or bookstore. In his lupus hardcover, Dr. Daniel J. Wallace devotes pages to APS; he covers how many people with lupus have APS & vice-versa; how many APS patients are symptomatic enough to actually require treatment; what the treatments are for people who've not had an APS "event"; when he reco's baby aspirin vs. Plaquenil; etc. He discusses MS briefly in several places.

Dr. Wallace lists conditions other than lupus in which ANA can be positive. Also, he lists specific autoantibodies seen in lupus: there are as many as sixteen (wow!) on his "short list". QUESTION: Can you see on your labs whether you've had specific tests that GO BEYOND the ANA test? e.g., anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-neutrophil, anti-histone, ETC.?

FYI, another top rheumie/author is Dr. Robert Lahita.

Whether your DIL's suspicion---that your rheumie prescribed Plaquenil to reduce the effects of antiphospholipids---only he can say. With what you cited---weakness, loss of feeling in foot, etc.---coupled with your family history (MS), your disc problems, etc., there's a lot to sort out!

On tingling & numbness: My mind just wandered in some other directions (it does that )... Is your blood sugar considered elevated (is diabetes a possibility)? Have your thyroid levels been checked as a matter of course? Any possibility of anemia? (I only mention those things because of problems I've seen in my family/friends, and me, too. I suspect my tingling was likely due to anemia. It stopped a few months into Plaquenil.)

I hope you stop in here again soon & am looking forward to your ongoing updates. Meanwhile, all best wishes! Sincerely, Vee

 
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