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Old 09-22-2009, 12:21 AM   #1
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JasmineWolfhawk HB User
Question spontaneous rupture of veins in fingers and/or hands, feet

I've never asked my doctor about this. I have so many different illnesses that are in-your-face issues, and this just happens every once in a while. Besides I've given up on any of them actually helping, for many reasons. The problem is that my veins in my fingers, for many years, just blow out for no reason. I can just move a finger the slightest bit and the pain is intense, like no other and indescribable but I'll try to explain, its like a bad pinching and burning at the same time as a deep cut, and I mean deep cut. If you ever had it happen once you know it again, and anyone on IV treatments for very long probably knows exactly what I mean by the vein blowout. I've had it due to veins wearing out (IV every 2 weeks for life due to Gaucher disease, genetic and rare) or the nurse missing her mark, etc, but this in my fingers has no trauma, no clear reason. A few months ago, one burst in the top of my foot, just sitting still watching tv, my legs weren't even crossed to put pressure on the circulation. Always in just fingers til then, and now the other day one burst in the palm of my hand, sorta in that pad below the thumb. Now I'm thinkin about the lungs heart and brain. I've got so many health issues there's no telling, but its not linked to any of my meds as a side effect, not listed anyhow, and not a symptom of anything I"m diagnosed with, tho I'm positive I have another illness. Anyone with a chronic illness probably has been thru the same, if its a rare disease especially because they don't know much about it, you know every symptom, everything that happens, they put down to the disease they already know about. As if having Gaucher's protects me from having anything else. A shield I suppose. NO point arguing, either. Its my body and I know more about the disease cuz I have it, studied it, and new docs who never had a patient and just remember a couple of paragraphs about it from med school cannot believe I would possibly know anything about my own illness and my own body. As you may guess I have a lot of pent up frustration about all this. Eventually I'll likely tell my whole story but doubtful any one person will read it all, because its so long it'd take a tome to record it all. You should see my medical files - if I can stay with one doc for 3 years or so my folder gets about 3 inches thick, and the clinic i was at for 6 years has two files and each is about 6 inches. I kid you not. so no doc is gonna really help me with this. I saw a thread about the vein thing before but cannot find it now, and never got a chance to read past the first few, where everyone was asking what is this thing, because their docs put them off too, the ones who went to a doc, and said vitamin c. They said, and I know I do, get plenty of C. I get enough blood tests a year I'd know and that ain't it. Sorry for the rant but I'll probably do it again, and knowing ppl seeing a rant this long wont read it, but its a forum for talking about this stuff and i've been dealing with this since i was 5 years old, and now I'm 42, so I have a lot to say, and it helps a bit even if nobody reads it, to write it in a public place where i know its at least out there. If anyone DOES read this, thank you,

 
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Old 09-22-2009, 06:06 PM   #2
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jennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB Userjennybyc HB User
Re: spontaneous rupture of veins in fingers and/or hands, feet

I read your entire post and then went and did some reading on Gaucher's. One of the first things I read was that it can cause low platelet counts and affect the ability of blood to clot. My daughter had thromocytopenia which is basically the same thing(clotting wise) but from a different cause. She also had spontaneous vein bursting due to the platelets and lack of clotting. Could that be the problem? If so, you should tell your docs so they could get a platelet count and check your clotting factors. May not be able to do anything about it but who knows.

This was on Type 1 Gauchers.

This help any?

gentle hugs.................Jenny

 
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