I got horrible news and am confused

331 Views 8 Replies 7 Participants Last post by itcbitc, Jan 3, 2009

itcbitc

Discussion Starter · Dec 31, 2008

Hi all,

I've been off the boards for awhile. I've been pretty sick. Actually, pretty surprised by everything that I've been hit with lately. Sorry that this is going to be a long post, but there is no short cut. I had an accident last June which required surgery. Prior to the surgery they did an MRI of the knee involved. They found a bone infarct. So during the surgery I then had a lot of bleading. My leg was literally black and went from above the knee to the bottom of my foot--solid bruise all the way. The doctors all said --uh oh--not normal.
They ruled out steroid use as the cause of the bone infarct because I use methotrexate and have rarely used steroids by choice. So, then they decided to do an MRI of my left (uninjured leg) and guess what? They found 2 significant bone infarcts in that leg.
Then I got sent for blood disorder testing and testing for the lupus anticoagulant blah blah blah. In the meantime, and over the last year I have suffered severe memory difficulty, speech impairment, inability to get my thoughts out of my mouth with these sypmtoms being intermittent including a recent episode of one sided paralysis. Now, they think I might be forming clots which are causing the bone infarcts. So now they are going to send me for an MRI of the brain they are going to check other joints and organs. A hemotolgist is now involved and they are talking about putting me on blood thinners BUT what I don't understand yet (or at least their explanations) is how I can be a "bleeder" but yet be clotting.
Sorry this is so long, but I am sooooo scared and confused and depressed and so on and so on and so on. . .
Has anyone else had these problems??? If so, does it eventually improve? I am so discouraged at this point.:sad:

BTW--Happy New Year all.

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Jesse88

· #2 · Jan 1, 2009

Hi itcbitc,

I'm sorry, I don't have experience with your particular problem, but I wanted to touch base with you until someone with more information posts. I can certainly understand how worried you must be, but it sounds as though your doctors are being very pro-active and I expect they'll get to the bottom of this before long. In a way that accident was a blessing. I wonder how long it would have taken before your blood problems surfaced if the accident hadn't happened, and would it have been much more serious by then. Try not to worry. Easy to say, I know, but remember we're living in a time of great medical advances and chances are very good that your story will have a happy ending.

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LolaLola

· #3 · Jan 1, 2009

Hello Itcbitc,
We haven't met yet. Sorry to hear what an awful time you have had.
I have no specialist understanding of your problems but wanted to say Hello anyway.
x Lola

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JoD

· #4 · Jan 1, 2009

http://www.merck.com/mmhe/sec14/ch173/ch173a.html
is a good article that explains the checks and balances of hemostatsis and what happens when something goes wrong with the system. In other words a how to be a clotter and bleeder.

Have you been dx with APS? I have it ( as do many others on the list).
I have had DVT, pelvic clots as well as clots in my lungs. I have had a Greenfeild Filter place in the arota to catch any future clots that may occur.
I am allergic to Coumadin, so at this time take asprin for thinning purposes.If I have any invasive procedures done than I do heparin injections to maintain the blood thinness to a desirable level.
Joanne

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Maia

· #5 · Jan 1, 2009

I believe they are testing you for a disorder known as Hughe's Syndrome or APS=Anti-Phospholipid Syndrome. Part of the testing for this disorder is the lupus-anticoagulant (quite a misnomer actually as it causes you to form blood clots despite it acting the opposite during testing in a tube) and also anticardiolipin antibodies (& Beta-2-Glycoprotein). There are several other genetic causes for increased tendency to clot which I'm sure they are testing you for too such as Leiden Factor V.

Your symptoms, of bone clots and the brain fog increasing, and one sided paralysis are all very suggestive that you have this disorder. Even if you don't test positive to the disorder, the strong history you have of proven blood clots is quite strongly suggestive that treatment is necessary.

The black leg following your surgery could have been due to other reasons, possibly medication including Plaquenil which acts as a slight blood thinner. I'm sure there are many possible reasons for that....

The blood clotting disorder does not mean that you can't bleed (even excessively) following traumatic events. It just means that sometimes, for unknown reasons, your blood is more prone to clotting. Doesn't mean that you can't be a bleeder too - we all are bleeders after all. {I have the clotting antibodies and minor clotting events, but yet had excessive bleeding with delivery of a baby for instance}.

Hope this helps and hope you get this all sorted out soon and find some helpful treatment to stop this from happening again. Good luck & let us know how it turns out.

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Pink Pearl

· #6 · Jan 1, 2009

I have a disorder seen in lupus, but not commonly. I produce platelets in my blood, but for some unknown reason they do not function normally. Thus, I have a lot of bleeding problems. It has been given the name of: "platelet function abnormality." It is treated the same as Von Willibrand's disease with DDAVP, but it is NOT VW. I was diagnosed as VW back in the mid 1970's, but newer testing for VW showed I don't have that.
I was given this diagnosis at the Puget Sound Blood Center in Seattle.

I know many people are familiar with the anti-coagulant syndrome, but the platelet function abnormality is more common than it was once thought. It could also be possible that you are looking at dealing with both. Having a hematologist is important as this is their field.

I had a maine **** cat which had anti-coagulant syndrome lupus. He got blood clots in his kidneys....quite a coup for his vet to have figured it out. He was on 1/2 aspirin e/o day and lived for about another 3 years. He was 15 when his body failed totally and I had to let him go to the Rainbow Bridge. [The animal internal medicine specialist who did diagnose him was amazed that I understood what he was describing, until I shared that I have lupus.]
Sally

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itcbitc

Discussion Starter · #7 · Jan 1, 2009

Thank you all for your support. I won't be able to get back on until tomorrow sometime to specifically respond to your individual questions. I have had one round of blood testing which revealed certain problems such as low platelets, etc. I just had my balance of tests a couple of days ago. Waiting on those results. So far the only additional diagnosis I have received is AVN (Avascular Necrosis SP??) They believe that a clotting problem is causing that. I suspect that the most recent blood tests will confirm and rule out. I will keep you all posted. And I will read the link posted here as well.

Thank you. Talk to you all soon and I hope this New Year finds each of us much improved.

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debatat

· #8 · Jan 2, 2009

Hi itcbitc

I just wanted to let you know that I too suffer from severe memory loss and fog, speech impairment, one sided paralysis, as well as numbness and weakness, as well as jerking/muscle spasms, pins and needles. I also have a clot on my vertebrae. I have been told that mine is due to a clotting disorder and I have to take aspirin to thin my blood.

Incidentally before what they described as my first thrombotic episode, my problem was the opposite I just couldn't stop bleeding and I have been told that this is significant. Sorry I cant be more technical but I forgot and dont always totally understand what the docs tell me.

I hope you get answers and proper treatment soon.

Take care

Deb

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itcbitc

Discussion Starter · #9 · Jan 3, 2009

debatat;529946 said:
Hi itcbitc

I just wanted to let you know that I too suffer from severe memory loss and fog, speech impairment, one sided paralysis, as well as numbness and weakness, as well as jerking/muscle spasms, pins and needles. I also have a clot on my vertebrae. I have been told that mine is due to a clotting disorder and I have to take aspirin to thin my blood.

Incidentally before what they described as my first thrombotic episode, my problem was the opposite I just couldn't stop bleeding and I have been told that this is significant. Sorry I cant be more technical but I forgot and dont always totally understand what the docs tell me.

I hope you get answers and proper treatment soon.

Take care

Deb

Sorry to hear about your situation. On the memory end of it, have your doctor test you for B1 and B6. I was very deficient in both of those. There is a great deal of research which suggests that deficiencies in these contributes to balance and memory problems.

Donna

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