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For Hester re: APS/stroke

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Posted 9/21/2008 8:31 PM (GMT 0)
Hi Hester,

 

APS is the Antiphospholipid Syndrome. In some people, lupus will create a protein that causes the blood to get thick and sticky. Puts us at a huge risk for stroke or heart attack. A simple blood test will tell you if you have it or not.  Another test to have done, which you probably have had, is the Anti-cardiolipin antibody test.  It's a standard test for anyone diagnosed with lupus.  It also puts us at a high risk for stroke or heart attack. I have that one too..... When it rains it pours....

 

I had an embolyic stroke in the left temporal lobe.  The embolysm was likely microscopic pieces of my mitral heart valve that came off and into my blood stream.  Those along with the APS caused my stroke.  I have some damage throughout my brain from that stroke, but it was worst in the left temporal lobe.  The stoke left me with a simple partial seizure disorder, some mild stuttering, and that's about it. I'm very lucky.  I was only 28 when it happened.

 

I'm on coumidin for blood thinning.  Works great as long as I can keep the levels in check.  I see you're on Plavix.  That is good. You're taken care of for any future strokes, etc. 

 

What deficits do you have from your stroke?  Do they know what caused it?

 

 

Posted 9/22/2008 12:30 AM (GMT 0)
What deficits do you have from your stroke?  Do they know what caused it?

I have an over reactive reflex in my right arm.  NO one notices it but me and the neurologist, which I do not see him anymore.  Forgot his name, and part of my medical record was lost at my family doctor, and some of it was thrown away.  the reflex makes my arm jerk a little bit when I am typing, just have to erase and start again.  I was very lucky too.  It could have been much worse.

I don't know what caused it.  they told me to quit smoking, but they blame everything on smoking.  I may quit one day when I can get that chantex, but it will be my choice, not anyone else's.

What is interesting to me about this stroke is that it was painless.  It happened in my sleep.  Perfect way to die.  If I  am to die, which I am as well as everybody else, this is a perfect way to go.

I am going to write down these blood tests things and ask the rheumy to do these tests for me, when I see him next month.  He does his own labs, so I don't have to make an extra trip in to get the bloodwork.  If I have already had these tests than he should know.  I have never ever even thought about getting copies of my blood tests reports, or asking the doctor if I have had this or that test.  Felt pretty much powerless with doctors.  If I have the results and the names of other doctors, than the doctor can't lose it.  I had a good gynecologist that I would really like to go back to, but can't remember his name either, or where he is located.

This lupus fog, and hopefully that is what it is, it has been around for a long time.  I have hidden it best that I could because of the threat of alzheimers and nursing homes.  I also have something similar to a mood disorder, and this has been blamed for it too.

Thank you for providing this information to me.  Hopefully one day I will be as educated about this as you are.  I don't see me remembering better, but if it is written down for me to find later, I will be reminded of what it is.  In my journal notes I have put, 'Ginny said to do these tests.' yeah this will remind me of what they are.

Hester

Posted 9/22/2008 1:02 AM (GMT 0)
LOL, Hester your last sentence made me smile. tongue   I really find that writing things down is the only way to go.  I forget things too, and I don't remember them until I get home and it's too late.... Very frustrating.

 

I have a full body jerk sometimes!  Seriously.  My entire body jerks when I'm doing "whatever".  It just happens.  I never thought it might be residual stroke mumbo jumbo.  Happens once or twice a day.  It's weird.

 

What made mine really odd is that both sides of my body went numb.  Not just one side.  The stroke affected both sides of my brain at the same time, causing both sides of my body to go all numb.  When it first happened, I thought I was having a migraine because I had this sudden headache, loss of vision and hearing.  What made me (and my coworkers) think it was much more serious than that was that I had confusion and I couldn't speak.  I was talking gobble-D-gook, and I couldn't understand what other's were saying to me.  My coworkers called 911. 

 

So yours was painless?  No headache that woke you up?  How did you know something had happened?  I agree, the best way to leave this earth is in my sleep. LOL.

 

Posted 9/22/2008 1:36 AM (GMT 0)

Hester if you are counting on Ginny to remember you are sicker than I thought! tongue Just kidding Ginny you know i love ya. turn

hugs

Hester to Ginny What deficits do you have ? LOL yeah I'm sorry it just sounded so funny the way she said it.

Posted 9/22/2008 2:37 AM (GMT 0)
Hahahaha, Carol!  If I didn't like you so much you'd be in trouble nono !!!  KIDDING!!

 

I guess "deficits" does sound sort of cruel, but when you have a stroke, that's what the doctors ask!  They have all asked me what "deficits" the stroke left me.  Maybe it's a Canadian thing! LOL.  "Ummmm, doc, how long of a list do you want...."

 

Carol, I'm glad I made you laugh.  Hester, you're probably chuckling along with us!  Ahhhh, the life we lupins have to live, eh!

Posted 9/22/2008 3:56 PM (GMT 0)
So yours was painless?  No headache that woke you up?  How did you know something had happened?  I agree, the best way to leave this earth is in my sleep. LOL.

No pain not for me or my mama when she had a massive stroke that paralyzed her.  this is my only concept of strokes, and I assumed everyone was the same.  No pain.

I knew something had happened when I woke up to an arm that felt heavy and that I could not move, was my only info that there was something wrong.  I thouht I had slept on it wrong and hindered the blood supply.  but when it did not go away, and I could not lift it, I called my son and told him that I thought I was having a stroke, and he took me to the er.  So little I knew about strokes.  did not know they were painful to some people.

Hester if you are counting on Ginny to remember you are sicker than I thought! tongue Just kidding Ginny you know i love ya. turn

hugs

Okie you did make me laugh.  And it was just what i needed.  For me Ginny's memory loss is welcomed by me.  Not glad she has it, but it is less fearful to me if somebody else has it too.  glad she shares it too.  If we can joke about it, it takes the edge off of it, at least for me. 

Thanks for all your responses, especially the laughter smilewinkgrin

Posted 9/23/2008 3:06 PM (GMT 0)
Hester, I think the "pain" issue with strokes is the severe headache that comes with them.  That would be the only pain I can think of.

 

Hahaha, I have some mild memory issues, but not bad at all.  What I have really bad is that my "brain dictionary" is missing some pages!  There are moments where I can't come up with even simple words to carry my conversation.  I feel so stupid and uneducated!!  Very frustrating!!

Posted 9/23/2008 9:18 PM (GMT 0)

Hmmmmmmmm Ginny,

I did not even think about my stroke causing me to lose some memory.  Could be I guess.  Didn't associate my memory loss with anything but ugly monster of alzheimer's.  you have given me something else to consider.

Thank  you.

I didn't get the headache that I know of.  but even if I had, I might not recognise it as it being due to the stroke.

Hester

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