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Old 11-06-2003, 10:30 AM   #1
Join Date: Oct 2003
Location: Burgin, KY
Posts: 53
football_mom HB User
should I be worried

Hey guys! I have a question. I am waiting to hear from my neuro sometime this week. I figured he would have already called but he hasn't. Anyway when I went and picked up my blood work from the hospital my anticardilipin IgM was extremly high. (40 with a range of 0-9) I keep migraines but yesterday's headache was different. It felt different and really scared me. I was seeing double for about 30 minutes and I was very dizzy all day long. For the past couple of days my heart has been fluttering alot more than normal. Of course I still have my headache today but it only felt like it did yesterday the first thing this morning, the rest of the day it has felt like it always does. Should I be concerned about the headache since my IgM was so high or not? I faxed my doctor this morning and told him about it and asked him to please contact me before the week is up. I hope he does but he may not. Since both of my test came back positive I need him to get a hold of me so I know what is going on. Any info will be appreciated. THanks

Last edited by football_mom; 11-06-2003 at 10:32 AM.

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Old 11-06-2003, 11:16 PM   #2
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Join Date: Jan 2003
Posts: 665
AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Hi football_mom,

It sounds like you are getting closer to an answer for your health problems that's for sure. Please don't panic!!

The anticardiolipin test indicates that you are high for the Antiphospholipid Syndrome antibody. This syndrome can go with Lupus, which is what it sounds like you have to. Your headaches can be explained by APS for sure! I have APS and my headaches were so awful before I was started on treatment. I don't know if you have read about APS, but I posted about it in the MS forum. Please go check it out. I think the thread is "APS can mimik as MS". APS is such a weird blood clotting disorder. Since you have the symptoms and the blood work both for Lupus AND APS, I REALLY hope that your neurologist will send you on to a Rheumatologist for treatment. If he doesn't, get back to your GP ASAP and get them to refer you to a Rheumatologist. Do not take no for an answer, this is serious stuff. You are at risk for some serious clotting stuff to happen if it isn't treated. I had been untreated for years, and I went dormant with it for awhile but it flared right up. I swear, if you get on the blood thinners your neuro symptoms will DRASTICALLY improve, even the headaches go away! IF your vision continues to be a problem, PLEASE get back to your GP!! You can get Optic Nerve edema (swelling) from APS and it can cause double and blurred vision to occur.

Do you have a history of strokes, TIA's (mini strokes), miscarraiges, or leg clots?

If you do, then chances are that it was due to APS. I really hope that your Neurologist will get you taken care of. Sometimes Lupus and APS are a journey to a diagnosis, I really hope that it is short for you and that they can treat both really soon. While your at it, perhaps you should be tested for Sjogren's Syndrome. It causes dry eyes, mouth, etc as well as joint pain and all that fun stuff. It can go with Lupus and APS, its a double whammy! The tests include blood work; or a piece of litmus type paper that is put in the lower eyelid to measure the eye moisture. A "bone dry" Shirmers (this litmus test) indicates Sjogrens. Your Optometrist or Opthamologist can do this test, as well as some GP's. THe treatment for Sjogrens is symptomatic, depending on the severity of your symptoms. Please take care, and don't panic!! You will get treated, and I hope that its soon so that you can feel better I will pray on this end!


Old 11-07-2003, 05:00 AM   #3
Join Date: Oct 2003
Location: Burgin, KY
Posts: 53
football_mom HB User
Thanks Angelic!

Thanks Angelic! I knew I could count on you. How much longer should I give my neuro to get a hold of me before I contact my gp. I know he had a family emergency the week before last and was unexpectdely not in the office and I am sure he is catching up on his work this week, but I need some answers and have tried getting a hold of him at least three times already. He is a great neuro, as far as listening and really acting like he cares but I am afraid to wait too much longer. My headache has returned like the other day, my hands are shaking, and I have two sores on the roof of my mouth. I just wish he would hurry up and get a hold of me. Thanks for listening.

Old 11-07-2003, 09:36 AM   #4
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AngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB UserAngelicBrat HB User
Hi again!

I don't mind helping you at all I would see if you can go in to see your GP. Take your blood work with you so that they can see these positive tests. Just don't tell him that you think that you know what is wrong with you, doctors hate that! You can ask innocently what he thinks etc. You can ask him to refer you to a Rheumatologist too because I think that is what you need. I would express your concern about the increase in your symptoms, especially the headaches and the visual disturbances. You will be okay, your on the right road. Make sure that you see a Rheumatologist that specializes in Lupus AND in APS. There are some really good ones out there, and some not so good ones! Its the luck of the draw!


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