antiphospholipid syndrome

cainlady · 09-29-2007, 11:16 AM

I am new to the board and was diagn'd with APLS after being sidelines with a large clot. I've gone thru the preg. challenges, heart, eyes, migraines and now cognitive stuff. I also have a spinal birth defect, along with osteoporosis. My question is that I'm concerned about the cog. challenges. I see and neurologist who specialized in eyes, was sent there by my retinal doc. Does anyone else have cog. difficulties? For example, I'm talking but then loose simple everyday words. I can explain it, see it as though it's ready to be picked off a tree. It's very random and throughout the day.
With the APS I do have deep bone and muscle aches, but that is ALSO from the osteo. My doc.'s are hesitating to start me on Plaquenil because of my eyes. I've learned over my 54 yrs. that attitude is everything, it's justs gets really challenging at times.
Thanks for any help and for listening:
Toni

goldenwings · 09-30-2007, 03:18 PM

Hi there cainlady,

You are in the right place here for support and understanding. Welcome. I too have APS - I can really identitfy with what you are saying about losing a word - knowing what you want to say and it just not coming out. Happens a lot to me. I forget what I said a moment before, I apparently stare into space whilst being spoken to and then don't know what has just been said.

Thing is though you don't have to have APS to have cognitive problems. Lots of people with lupus have this kind of this and don't have any APS symptoms.

Also I have problems with my spine and the bones surrounding it. I have osteo too. We all have to be careful though in determining what is and what isn't down to lupus.

Regrding the plaquenil treatment, in the end it is really down to you, it is your choice whether or not you take it. You have to way up the benefits against the "might cause a problem" side of it. It doesn't affect ewvery patient in the same way. When you take plaquenil though, your eyes should be checked at regular intervals. You will be checked when you first start on the treatment, then an examination should be repeated every six months while taking the medication and for a further period of time if treatment was discontinued due to visual symptoms. Periodic routine blood testing will be carried out to ensure things are ok with your lupus, so a detailed check should be carried out for you to make sure things are gong ok.

Hope this is of help to you. Please come back to us with your questions and Hopefully there will always be someone here to help you in any way we can.

Take care

goldenwings

cainlady · 10-08-2007, 10:53 AM

Goldenwings, thank you for getting back with me. I'm home today feeling like garbage. As far as Lupus, the Doc. says that I don't have it as of yet and may never, though the likelihood is high. I've have my eye exams for the Plaquenil. The outcome was it's up to me. Because of my underlying eye challenges, I'm not sure what I want to do. All that I know right now is that I'm not feeling very well at all. I've been told to watch out for add'l clotting, but other that PAIN what do I look for? I'm beginning to think that I've got another one starting at the top of my calf, almost behind my knee. But I don't want to bother the doc. if it's just my normal pain from the spine/nerve stuff. It's been keeping me awake, more than normal, the last few nights.
I appreciate your taking time to talk with me. I have no one around me that has APS or has heard of it other than my Doc.
I hope that today is a good day for you. I just know that God is watching over us. I have to hold onto that.

goldenwings · 10-08-2007, 01:06 PM

Hi there cainlady,

If you mean problems with clots, apart from pain you usually get redness and hotness if they are in your legs as mine were not so long ago. I had them in both of my lungs at the same time as the DVT but didn't have the same type of symptoms as the leg clots I had. I presented with horrendous breathing problems, so they can and do present in different ways.

The thing is though you certainly must 'bother' your doctor if you are unwell or feel that something is amiss. You know the difference in the type of pain you experience. Things like this that are left can turn very quickly into nasty little clots as you know.

You say your knee problem is keeping you awake at night. I am not diagnosing of course but the way you describe it, it might even be a Bakers Cyst. Only your doctor can check this for you, you must go and see him as soon as you can. These cysts can occur through injury which can cause fluid build up, torn cartilage, arthritis, even an infection can cause fluid retention.

Even if these symptoms are mild or not too bothersome, it is best to get it checked out because there can be complications, they don't normally just disappear on their own.

I do so hope you feel better soon. Take care.

goldenwings

cainlady · 10-08-2007, 05:02 PM

Goldenwings, thanks once again. Your info is very helpful. The place that is currently a concern is on the upper calf in the back of my leg. I understand talking with your doc and how beneficial that is only too well, due to my other health challenges. This for me is different, I'm feeling something different from my spine det. pain, the constant pain in my legs , the heart, etc. I guess that after all the years of one med thing to another, it has me more than tired, tired of the pain, the lack of sleep, the vision, etc. Most days I'm able to keep a cheery outlook. Today, I feel worn out. If I don't hear from my doc. today, I'll try again tomorrow. But I have to go to work tomorrow as well. Normally, no matter how I feel, I'm there. With the new pain in my leg, I just couldn't go today. I can't tell if there's redness, but there is definitely swelling, & deep pain.
Enough of this, I will be careful and you too.
Thanks,
Toni