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 Anti climax....

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Posts : 7
Join date : 2011-10-06

PostSubject: Anti climax....   Mon Jan 09, 2012 7:46 pm

I have been off work for about 6 months now, healing from my acute left ankle sprain;which then evolved into a left calf DVT. Whilst dealing with doctors of all variety and a battery of tests to determine if I have a blood clotting disorder here are some latest pieces of information.

1. I am, as of Jan 5, CLOT FREE! while this excites me, I am still left reeling from the following.
a) I believe I have Post Thrombotic Syndrome and that just plain sucks, but is manageable.
b) my doctor immediately informed me to get off of Pradax, that sounds great however, I am still not so certain I do NOT have a pre exisiting disorder, as I had three blood tests early on that may have indicated that possibility, Protein C deficiency, Protein S deficiency and Lupus Anticoagulant. Now, these results were likley skewed at the time as I was on thinners. So, instead of my GP suggesting I get re tested while I am now off thinners, I HAD TO DO THIS. Does that seem logical?? So, I have those tests coming up in a week.
c) I went to see a rheumatologist to deal with lower back ache I have had for years, thought it may have contributed to my nasty fall in July and the reason I ache all the time. Blood test revealed HLA-B27 for Ankylosing Spondylitis. Which, I agree may be possible, however I still have to have an MRI because in all likelihood, according to my rheumatologist, I likely "just have fibromyalgia"; so I need the MRI I guess to rule out A.S. So THAT has to happen before I get the green light to go back to work.
d) I also have to see a nerve doctor to attack the possibility of having Carpel Tunnel

So, that being said....does anyone else find it strange...that I HAD to mention to my doc that "heh, how be we make sure I don't have a clotting disorder before I get too excited"???? Anyone??? Seems so crazy to me that I would have to be that person to advocate for the obvious. Anyone else face this kind of craziness??

I am also thinking of the possibility of seeking another rheumatologist as I am CERTAIN I have some form of auto immune disorder and need to be reassessed as the rheumatologist I saw was incredibly dissmissive.....but I worry that I will be black balled by my insurance company and ordered back to work. I am not physically let alone emotionally ready....thought I would be elated that the clot is gone, not so much it seems....just seems a long process to get any answers. Haven't seen a blood specialist since Aug when he merely said "you have this clot cause you fell...lose weight and you'll be fine". Like REALLY?......

just venting here I suppose...and stuck with nothing but more questions than answers yet again.

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Posts : 2
Join date : 2012-01-13

PostSubject: Re: Anti climax....   Fri Jan 13, 2012 5:00 pm

My doctors arne't going to do any kind of genetic testing until and if I have another clot.

I do find it hard to have to advocate for myself, because it's MY health we are talking about and I really want to scream that to them. It's not their lives that might be affected, it's MINE.

I will try and insist when I am due to come off of the warfarin in May or June, but we will see.
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