I had an idiopathic upper arm DVT, about 6 and a half months, after I had a leg DVT and PE.

I would keep taking the folic acid unless your doc says to stop, as based a little on what I've read, that does seem the protocol for addressing hyperhomocysteinemia. It could be you have other unknown factors that make you prone to blood clots as well.

Sorry you had a second clot. It's a bummer! How are you addressing the anemia?

We aren't gonna address potential anemia yet, he wants to give my body a chance to settle itself down before doing a CBC to check.

Meanwhile, I have quite the new problem.

Yesterday I took my last xarelto, and went to pick up my new dosage at the pharmacy. Turns out, my doctor's office forgot to request the authorization (which takes 3-5 business days). I say OK, and ask if I can just go ahead and get my refill for my current dosage, since I have a refill available. I am told no, that I need an authorization to get a refill too. Well, it's friday and they're closed over the weekend, so 3-5 business days puts me at a week with no blood thinners.

I call up my vascular surgeon's office after spending 3 days getting shuffled around and finally was able to land an appointment 10 days from now. I told them that the pain in my arm has been increasing, with pain in my chest and the side of my neck, increased swelling, and more numbness in my hand.

They tell me to go to the ER, so I do. 6 hours later, the ER doctor tells me I don't have a blood clot. I argue, telling him the ultrasound tech must have missed it (she only made one pass over the axillary where it is, and spent most of her time in the subclavian area). I told him I am unable to believe that just 3 weeks after being diagnosed, it simply went "poof" and disappeared, especially with all the increased pain I'm having. He said I don't have the symptoms of a blood clot and probably just have an inflamed ligament. I started bawling my eyes out, telling him for the 4th time that I have a blood clotting disorder, that due to a paperwork mistake I was out of blood thinners and wouldn't be able to get any from my doctor for a week, and that something needed to be done. He said "If you want blood thinners, then you're gonna have to go bug your doctor about it". Then he walked away. I went home with nothing.

I am so upset that I've been made to feel like I was crying wolf over nothing. I didn't strain a ligament. Those of us who have experienced vascular pain now know that it's different from a muscle or ligament. It's nearly impossible to explain it to someone who hasn't felt it.... but it is distinctly vascular.

I'm scared. I have to go a week without blood thinners because this doctor refuses to listen to me and take me seriously.

Forget the ER doc, he's an idiot and cocky to boot. If your clot was diagnosed quickly, it is possible for it to have dissolved in 3 weeks (I had multiple clots in my lungs that were gone after 5 weeks), but the damage it leaves behind can take a long while to heal. Also, the meds are necessary and will help with the healing by keeping new clots from occurring.

It's possible that the increased pain is from returning blood flow to damaged tissue, which is why you're getting it now.

I would call your doc's after-hours number ASAP and talk to them. It's ridiculous that you've been put in this situation. If nothing else, maybe aspirin could help until you get your new meds... maybe check back with the pharmacy.

I'm so sorry... I'd be crazy stressed too. Hang in there!

I've calmed down enough to believe that I might just be having some post-thrombotic syndrome... but of course, I still need my medication! I may need it for life...

but given the fact that other than pain and swelling in the clot area, that I'm also having numbness in my hand and pain in my chest, ribcage, neck, and shoulder area... it makes me nervous that my ultrasound missed it. I looked back over the paperwork and they keep emphasizing the jugular. Jugular was analyzed. Jugular shows no signs of thrombosis... that's great, but my clot was in my axillary! I said that several times... my medical records indicate that... why were they focusing on the jugular? It makes me nervous...

In the meantime, I do think I may try aspirin. I took baby aspirin the last time I had a DVT and my insurance donked up and I ran out of coumadin for a week. But when that happened, I finally went to the ER, and they prescribed me 10 days of lovenox to keep me safe. This time, I was sent away feeling like an idiot, and emptyhanded.

My last DVT took 7 months to go away. Every clot is different and it really could be gone in 3 weeks, but I just can't wrap my mind around that yet. I did catch this one a bit faster than the last one. I waited probably about 8 days worth of pain until I went to the hospital with my last DVT, with this one I only waited 3 days because by then I KNEW. I knew that vascular pain...

I see my hematologist in 3 days, and my vascular surgeon in 10 days. I can make it...

Um, someone needs an ass kicking at your doc's office. I'd get on the phone first thing tomorrow morning and raise holy hell. I've done it. Can you imagine a diabetic not having their insulin because the doctor's office forgot? No. It's unacceptable in that scenario and it's unacceptable in your scenario.

I'd be furious right now, about the meds, being jerked around at the ER. I'm sorry you are having to deal with this.