I think it's something like 10% of all DVT cases are in an upper extremity. Most are related to strenuous activity, like baseball pitching or rowing, or from something like a central catheter They can break off and travel to your lungs just like a leg DVT but my understanding is the risk of that happening with an arm DVT is much lower than a leg DVT. I don't think it's the standard protocol to check for arm DVTs unless there's a reason to suspect there's a DVT.

The treatment would be the same. Like any DVT, some people experience symptoms and some don't. I mean with my DVT in my leg, I had PE symptoms for months before I ever had DVT symptoms. So I likely had a DVT without symptoms for quite awhile. Eventually I did get the classic symptoms: pain, redness, swelling.

I've had an upper extremity DVT as well. Symptoms were different from my leg DVT. I had no swelling in my arm. At first it just felt like I had a rubber band around the skin of my inner elbow. Within a week I had more pain in my upper arm, like someone punched me.

Are you thinking you had an arm DVT?

I had some pain in my arms but never the rubber band feeling. I never really thought about it until today when I had a small tingling spot on my arm.

Are you staying hydrated? If I get dehydrated, I get tingling limbs sometimes.

That rubber band feeling was just my experience; I think symptoms are typically the same as that of a leg DVT.

That could be very possible. I drink a lot of pop which I know isn't good haha. I should drink more water. I'll give that a shot.

It also seems that my lower forearm has a bulge in it. It's not muscle necessarily but it's on both arms at the same spot. Does this sound like swelling associated with dvt in the arms? It's not discolored and it doesn't go into my hand either. I'll upload a picture into my pics.

Honestly I wouldn't know since I didn't have any swelling with my arm DVT and I'm not a doctor so I'm not a good resource for weighing in on whether it looks like a DVT. That would be best answered by a medical professional.

Are you really hyper focused on your body right now? That's really normal after a DVT/PE but it will make you loose your marbles after a while.

I would probably have to say yes to that. Partially because some of my doctors say one thing and others say another thing so I'm unsure who to believe so I feel it's all up to me to find things wrong.

I kind of followed your conversation here the other day, and wasn't sure whether to join in or not. I had an arterial clot in my arm, so I kind of hate to say anything specific about my experience, because I don't know how much or how little it would differ from a DVT in the arm. Although I previously had DVTs in my legs and the pain I felt in my arm was similar to the pain I had in my legs.

I have a very obvious bulge in my arm that clotted, and I did/do experience quite a bit of swelling. My fingers even get extremely fat sometimes when the swelling gets bad. But I think that anything you have which is in both arms is very unlikely to be related to blood clotting. I can hold out my arms and there is an obvious difference in size and color when you look at them side by side.

When I got the clot, I didn't know that's what it was at first, but I knew for certain there was something wrong. I don't know that every situation would be like that, but in my case, there was no doubt something was wrong. The pain was extremely bad and I couldn't straighten out my arm. Early on mine also had a feeling like a rubber band around it similar to what rmb said she had.

DVTs present differently in different people, so I'm don't think every experience would be exactly the same, but I think that most likely if you had even what had been an undiscovered clot in your arm prior to getting PE, it would be the kind of thing where rather than looking at every minute detail of your arm and trying to see if maybe a clot came from there, the situation would be more like, Oh, yeah, THAT explains this pain (or swelling, or discoloration) that I had in my arm and I didn't know what it was. It's not to say it's impossible that the clots could have come from there, but the chances are probably not too high either, and ultimately it doesn't matter in a physical sense where the clots originated if you're not getting symptoms of anything, be it in your legs or your arms. I'm not trying to diminish what you feel emotionally, because I do understand the desire to know where the clots came from in the first place, but unfortunately sometimes it's just not possible to tell. I had a friend who had extremely severe PE and at the time the doctors couldn't find DVTs in her legs, so she was left wondering where they came from. But years later through other scans and better imaging (and it could even be the difference in the skill of who read the scans) they said there was evidence that she had at one time had DVTs in her legs. They believe that what happened was literally all of the clot moved from the original place to her lungs, so when they scanned for it initially, well she didn't have DVTs in her legs because they'd all relocated to her lungs. You might have a similar type of situation. When it seems like we can't get a clear and definite answer, sometimes the best thing to do emotionally is just to accept that it's one of those things beyond our ability to know, and refocus our energy to just the recovery process.

I hope that you will feel better soon.

What do your docs say?

I have/had clots in both legs which were found at the time of hospitalization. I asked then why they didn't do an ultrasound on my arms and they said it was unnecessary. From time to time I get a sharp pain in both arms and I've noticed the swollen area before I was in the hospital but never thought to mention that. As for the doctors, they say I won't need warfarin for life and then they do. They say I have a clotting disorder and then I don't and now we're back to I might have a disorder. And now the referral to a rheumatologist before I've even had a consultation with my hematologist has me wondering what's going on. It's all annoying. I'm 3 months from my clotting/pe but it seems like it's a never ending battle with anxiety and fear for the future. And I suppose I overreact but they doctors do so little to help with the anxiety part.

I should say I completed lovenox months ago and have been therapeutic on warfarin for three months. I'm finally done with weekly blood work and moving on to once a month.

That whole you should be on warfarin for life or you shouldn't be, a lot of people get mixed opinions on that initially but considering you just started your warfarin therapy, does it matter right now whether you know that yet?

I get wanting to know what caused your clots, but to Shilosmommy point, you may never know. That's kind of the perspective you have to start putting things in, that there may be a tangible reason, but there many not be either. So getting a plan in place for all of this is key. Start with your hema first. I know you have an appt on the books for that but I can't remember when your appt was scheduled. And then again, ask him why he feels its necessary to send you to a rheum at this time. Because I agree that was handled weirdly. Put your questions on paper. That will help you when you talk to doctors.

You have to have genetic testing to know if you have an identifiable genetic clotting factor so until you have the tests and results no one can know. I think your docs are likely just opining based on your situation. I tested for genetic factors twice and they came back negative and I still have clotted twice.

I totally get wanting answers right now but if it's feeding your anxiety, you have to find a way to deal with that because that affects your well being too. And if that means just pulling back and not doing research for now, do that. Take control of what you have control over. I know it feels like control to do all this research but if it's making you obsess or taking time away from other things, that's the opposite of control.

I say this because I've been there. I totally know what you're going through and what it does to your thinking. It's a terrible to feel like your body has betrayed you and you don't know why.

Strictly speaking, from a diagnostic point of view, even doing the scan on your legs wasn't necessary. If they've diagnosed PEs, I'm not sure there's any actual reason to scan your legs, arms, etc. To look at it simply, they do the tests so they know how to treat you. The treatment for PEs and DVTs (legs or other places) is all the same. Once they diagnose one, they shouldn't need to do extra tests to diagnose others. You start on the exact same treatment regardless.

When I had my PEs, I really wanted to have the scan of my legs done just to see if we could figure out where the clots originated, but it wasn't medically necessary and no one was sure that insurance would cover it without some sort of pressing reason. There was nothing we would learn from a leg scan that would have changed my treatment, so we didn't do it.

With the exception of severe PEs that might be immediately threatening your life, the treatment is almost always identical for most clots, regardless of location: They put you on anticoagulants and they wait for the body to heal.

It does sound, at this point, like you might be overthinking things, especially with regard to the arm clots. the chances of having two identical clots in exactly the same place in both arms at the same time is slim to none. It's likely that the bulge you're seeing has always been there but you're just now looking at yourself with a more anxiety-ridden eye.

I get where you are right now, mentally, as I've been there too. The first six months or so of recovery was more a battle with the mental demons of anxiety and fear than anything else. My body was progressing, but my mind seemed constantly stuck in paranoia. It can be super hard to get past that, and, if you don't feel like you're getting any better there, you should come up with a plan to deal with it before it totally takes you over. Maybe therapy, meds, meditation, journaling, or whatever works for you.

As for conflicting opinions from the doctors... keep in mind that ultimately it is up to you to decide what to do when it comes to staying on warfarin for life. They can recommend stuff, but no one is going to drive to your house every day and jam a pill down your throat. To some extent, they can only give recommendations ... you have to decide what works best for you.

As for clotting disorders, they may be guessing that you have one, just based on the fact that you clotted. Get the hemo tests and get officially diagnosed one way or the other. Having a doctor guess that you "might" or "probably" have a disorder isn't the same as getting the bloodwork and getting proof. Although ... keep in mind that not everything is known about clotting disorders. They're discovering new things every day. I've clotted three times and I've had the clotting disorder tests multiple times and I'm negative for everything that is CURRENTLY known. They told me in the hospital that I might just have something they can't identify and/or test for yet.

Write down your questions for the hemo and start with that appointment to figure out where to go next. Maybe you see the rheumatologist, maybe you have tests run, maybe not. Take a deep breath and try to figure out what you can do right this second to decrease your stress and worry.

Hang in there! It does get better!

Hi, Lots of good advice already given but I'll chip in a bit. More a case of "your experience isn't unusual" but no silver bullet.

Regarding the amount you get scanned (legs, arms, ...), when I had my 1st set of DVT/PE in November 2012, they started scanning at the top of my leg and stopped pretty straight away as there was a bit of clot flapping away near my groin. My leg never got fully scanned until after my 2nd set of PEs ~10 months later. When I was chatting to the guy about this, his reaction was "we didn't need to do anything more, we're busy and the treatment would be the same". Not unreasonable, and I'd imagine it would be the same for arms, ...

Similarly, I seem to get to see a different consultant each time I go back to the hospital for a consultation, hence often get different opinions. Apart from the diagnosis about why (still unknown) the PEs happened/recurred, the only real decision to make was about stopping. In my case, this was the wrong one, but without any evidence about if the clots will recur, the decisions are often subjective. Lots of people are tempted to stay on, but equally plenty of people who come off are pleased to be off warfarin. If you've 3 months to go, try not to stress about it. You can come off and if the clots come back, you've plenty of experience about what your body feels like.

I've never had much anxiety, so can't really relate to it, but if your INR is stable on warfarin and you don't have any complications (like PH, PTS, warfarin reactions ...), try and focus on these positives.