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A little help please.

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Old 01-27-2009, 02:25 PM   #1
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A little help please.

Hi everyone, just a few questions. I have been diagnosed with Antiphospholipid syndrome, I test positive for that but not for lupus. My diagnosis is UCTD, my blood work doesn't go that exta step. I will be seeing my rheumy in a week and I want to discuss the antiphospholipid with him. He doesn't currently treat me with anything for it, but I also don't have a great deal of problems from it. Most of my problems were in my teens through thirties. Miscarriages, migraines etc.

I want to be able to ask the right questions, I have been reading as much as I can about it. Anyone have any advice as to what to bring up and talk about. I always prepare a list of questions and he always answers them all, I even write down my answers while he is talking. He never rushes me. I am now 60yrs old and I want to be sure I am doing all the right things and asking all the right questions. I have declared this as the year of ME, not meant in a selfish way, but meant to take care of all my health issues I have put aside while my husband recovered over these past years.

Thanks for any help you can give me.

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Old 01-30-2009, 05:50 AM   #2
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Re: A little help please.

Glojer, hi. In your shoes, I'd probably
1. verify repeat testing is being done
2. ask him what your worst level has been, and at what level he reco's light treatment (like daily baby aspirin) vs. stronger blood thinners
3. make sure you have a list of symptoms to be aware of. Maybe he has a reco (like one of the standard hardcovers), or can hand you a printout from his own resources.

How've you been feeling lately? Has this winter been nasty enough for you? I hope hubby & you are both doing well. Always, Vee

Old 01-30-2009, 09:41 AM   #3
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Re: A little help please.

Hi veej, this winter has indeed been so nasty. I do so much better in the crisp cold weather, cause you know that sun and heat is a bother to me, but this terrible damp, wet, icky, snowy, nasty mess has been dealing my joints fits.

Your suggestions are very good and I will certainly use them thank you. I have been having an affair with my Dr. Wallace and Lahita books....giggle! They are so full of information. I think maybe my terminology was not correct when I said diagnosed with antiphospholipid syndrome. I test positive for antiphospholipids and in particular anticardiolipin, my IgG is high as well as IgA. See what reading those books has done for me. Anyway, I feel it is time to make sure I don't throw a clot and have a stroke or worse because I didn't discuss all options with my doc. Unfortunately I don't think retesting will help at this point, I read that taking steroids can cause your tests to come back normal. I do take a daily dose of prednisone. However, I have also read that plaquenil and aspirin are a good combo. Some info I read suggested steriods were not the best for antiphospholipid and some said it was. At any rate I will bringing up all options and that's a very good idea asking him what he would recommend to read.

I have been a on a roller coaster of flaring and doing better. Between the holidays and the new baby grandson, almost 3 mo. old, and his 6yr.old big brother and babysitting, combined with all the weather and other responsibilities. Well, you get the picture, it is no different for me than anyone else. It will all work it's way out. My hubby is doing very well thank you for asking. He will need to do physical therapy again, he has let his muscles get a little weak. Maybe this time he will keep up with his exercise.....this not being the big strongman is new to him, he will get the idea one of these days.

I hope you are doing well, I know your part of the country has had worse weather than us. Of course some areas are just more prepared for it than others. My hubby was stationed in New Hampshire while in the service and he said they know how to deal with it so much better than here in MO. Take Care, my docs appt. is next week I will update you on what I find out. You are such a rock on this site, I don't know what we would do without you, thanks.


Last edited by Glojer; 01-30-2009 at 09:43 AM.

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