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Old 09-29-2007, 07:16 AM   #1
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cainlady HB User
Wink Re: antiphospholipid syndrome

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

 
Old 09-30-2007, 11:18 AM   #2
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Re: antiphospholipid syndrome

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
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 10-08-2007 at 08:46 AM.

 
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Old 10-08-2007, 06:53 AM   #3
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Re: antiphospholipid syndrome

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.

 
Old 10-08-2007, 09:06 AM   #4
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Re: antiphospholipid syndrome

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
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 10-10-2007 at 08:48 AM.

 
Old 10-08-2007, 01:02 PM   #5
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Re: antiphospholipid syndrome

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

 
Old 10-10-2007, 08:51 AM   #6
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Re: antiphospholipid syndrome

Hiya Toni,

Sorry you feel so bad, but you must look after yourself. I know it is difficult to juggle work and home life but please do take care.

I honestly feel though that having emotional support really helps. Sharing your fears with others who have the same problems is such a good thing. Nobody will judge you and you will only get bck positive comments, everyone is so understanding.

Speak to you soon I hope.

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

 
Old 10-11-2007, 08:56 AM   #7
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Re: antiphospholipid syndrome

Just wanted to let you know that I did end up in the hospital with another clot. Thank you for your support.
Toni

 
Old 10-11-2007, 12:28 PM   #8
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Re: antiphospholipid syndrome

Oh toni,

I am so sorry this has happened. I am happy about one thing though and that is you were taken into hospital and hopefully got the correct treatment at the time of it happening. Now you will get on a regime of blood thinners appropriate to this clotting problem.

Come back when you are able and please let me know how you are won't you ? You are in my thoughts.

Take care.

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 10-11-2007 at 12:29 PM.

 
Old 10-12-2007, 12:04 PM   #9
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Re: antiphospholipid syndrome

Toni,

I too have APS and have had one major stroke and many mini strokes until they finally put me on anticoagulants. I am so sorry that this is happening to you. I just wanted to say that I understand your frustration and the challenges that you face. I also understand the cognitive problems. For years it has been a big joke in my family because I could not come up with a word I wanted to say or a completely different unrelated word would come out of my mouth. It was not until I joined this forum that I understood that this sometimes comes along with lupus and/or APS (I have both). It is so helpful to have a place like this forum where people understand what you are going through.

I am praying for you and your recovery. Keep posting when you feel well enough. Bern

 
Old 10-13-2007, 12:45 PM   #10
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Re: antiphospholipid syndrome

Jamusa
Hello, Toni I just got to the board I hope you are feeling better keep your hopes up and faith strong. There are days that seems long and painful, but if we didn't have those days then we wouldn't appreciate the days we didn't have pain and everything was great. Hang in there and God Bless you.

Love

Jamusa.

 
Old 10-14-2007, 05:07 AM   #11
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cainlady HB User
Wink Re: antiphospholipid syndrome

Hi All, just wanted to let you know that I'm "hanging in". The anticoagulants are back to what I was on before this latest clot. I' stopped the Lovenox injections. I admittedly am concerned about 2 episodes within a 6 month period of time. But, I know that God is watching over me and all will be well. Because I tend to be an up type of personality, those around me don't always take me seriously and truefully, I may not be honest with them all of the time. However, because of this latest episode, which one of my Doc. says "should never have been allowed to happen", I now know that the APS is for real!!

Thank you for your care, concern and prayers. I will be fine with God's help and the love of those around me, at any distance. My prayers are with you too, Jamusa, Bern and Goldenwings. Thank you for the help. I'm learning. Let me know how are are doing. Well, I hope. Love, Toni

 
Old 10-18-2007, 08:49 AM   #12
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Re: antiphospholipid syndrome

I just wanted to hop in and see how you are doing? If anyone has questions regarding APS, go to arthritis.org. They are a great resource for auto-immune diseases.

I hope that you have a good day.
God Bless,
Toni

 
Old 08-02-2008, 05:00 AM   #13
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Re: antiphospholipid syndrome

It's now 18 months after my first clot. I've have 3 DVT's and the latest a PE. I've been on Arixtra for the last 6 weeks. I've been having excruciating pain in my hands and lower legs & feet for the last several months. All of the testing is showing nothing new. The same neuropathy, etc. Does anybody out there with APS have the same symptoms? I'm taking charge and am going to lead my Docs toward help for me. I have to do something, the pain is keeping me up at night! I'm just slow and steady during the day. Have a loss of balance because of the legs.

 
Old 08-02-2008, 05:57 PM   #14
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Re: antiphospholipid syndrome

Hi,
I am so sorry that you have had so many additional problems. This must all be so very frustrating for you. I know how challenging it is to live with daily pain.

In addition to my APS and Lupus, I do have neuropathy in my legs. The pain used to be really bad, especially at night. I now take neurontin for the leg pain and it has helped quite a bit. I take coumadin for the APS -are you taking coumadin?

I will pray that you get relief from all of your pain. Let us know how you are.
Bern

 
Old 08-03-2008, 04:49 AM   #15
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Re: antiphospholipid syndrome

Hya cainlady,

It is so difficult to know exactly what is going on. We have the same blood clotting disorder but it can present in different ways, some of us do end up having multiple clots, others don't

I am convinced my multiple PE's and DVT's that happened all at once were as a result of my heart problems, not my APS. I have had heart attacks which led to major surgery. I am in heart failure now and it is getting much worse. Thing is though before any of this happened I had never had clots of any kind that caused me to be hospitalised. I did of course have 'sticky' blood from being very young that caused me to have other problems, but I am convinced that my APS was not the cause of my last major clotting problem. Only my opinion of course.

I have a nerve and muscle wasting illness too, which is classed as the twin of MS, but as the name of it is not widely known then it is not acknowledged as MS is. This can present at times with pins and needles and so on. As I said though it is nothing to do with my APS.

The thing is don't give up on asking your GP to look into this for you. If you are doing ok with painkillers then that is good. I cannot take pain killers as they interact with all of the other meds I take, so I have to do the best I can with just paracetamol.

Have a lovely day and take care.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 08-03-2008 at 11:48 AM. Reason: misspelling

 
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