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Advice:
Misdiagnosis?
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Hi Guys,

Im new here and the reason im here is because i think i might have a dvt and possible PE but it is being miss diagnosed. I will tell you my story but im looking for personal opinions and advice on what to do.

It started after a long drive i woke up in the middle of the night with this pain in my leg that was really bad. I couldnt really walk on the leg and i deffantly couldnt get back to sleep. The pain eventually subsided and i managed to get a couple hours sleep. Upon waking up the leg pain was replaced with what felt like a stiff muscle that you normally get after working out and it was swollen.

I went to the the doctors who suspected a blood clot and as it was a weekend gave me an injection in the stomach and arranged a scan on monday as well as blood test. As my pain was only in my calf at that time the ultrasound was only performed on the calf and the main place of pain was not done. I just figured the lady knew what she was doing and i was told i had no DVT. My blood test also came back fine. I went away happy.

A Week later i was still getting pain in my calf but the swelling had gone down but i started to get pain on the inside of my thigh and my groin. I went back to the doctors who again said DVT and i had another injection in the stomach and a scan and blood test.

The lady who did my scan this time wasnt very nice and seemed to think as i already had a scan i didnt need another one this scan was of the whole leg but was rushed and didnt seem to be done right. Blood test came back fine.

I left it for a couple of weeks but i was still getting pain in my leg and my chest was very tight and sore. I went back to the doctors and they said it can be a DVT as i had two scans and two blood tests which were normal. I ended up paying for a private scan and blood test which both came back fine. This scan was done brilliantly and i was happy.

Fastfoward 4 weeks and my chest is still really tight im getting dull aches in my back, Shortness of breath when doing very little( which is unlike me) My heart skips beats i occaisionly get sharp stabbing pains when i breathe and my lungs feel raw when i breathe. Iv been back to my doctors several occasions I have had a clear xray, a course of antibiotics and a course of steroids as well as an ECG. My lung function test was normal and so was my oxegyn levels.

Thing is my leg is still sore and now with this im scared its a PE and my DVT has been missed.

My Doctor wont sent me for a CT scan for PE as all my tests have come back fine. Iv even offered to go private but because of the radiation and risk of allergic reaction to the contrast she wont.

Is it possible the ultrasounds could of missed the DVT? Could the clot of broke away and moved to my lung before i had the third scan so it appeared negative?

If i had an MRI with contrast instead of a CT scan would this pick up a PE?

This has all been going on for nearly 2 months. If i had another ultrasound on my leg would the time that has passed since it began make it more difficult to find?

Finally during the first week of this happening i was in the hospital for some routine checks and i had an IV put in. Since then iv got a lump where the IV went in. I have spoken to my doctor about this and she has advised this is probally a superficial blood clot and nothing to be worried about. I did ask her why my blood tests came back normal if i did have a clot and she said this one would be to small for the blood test to pick up. But i have read these can sometimes break off into a deep vien?

Sorry its really long but im kind of lost on what i should do. I dont know if i should just leave it or if i need to go back to my doctors. I think she is getting a bit annoyed with me.

Thanks very much for taking the time to read this
Posted on 12/22/11, 03:05 pm
12 Replies | Most Recent Add Your Advice
Reminder: This is a support group for Deep Vein Thrombosis (DVT). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Advice:
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Reply #1 - 12/22/11  8:36pm
" I honestly am not sure what to tell you. I have to agree that all your symptoms sounds like DVT and PE, but the ultrasounds should have picked something up if that was the case. I guess it is possible that it was missed on three different checks (anything is possible!) but I wouldn't think so.

Also, I assume the blood work that they have given you is a d-dimer test? The accuracy of these tests is somewhat in debate, but mostly if the result is positive. Negative tests are really pretty reliable according to the reading I've done.

One option would be to go to the ER for a CT scan. A lot of times when they hear the words "blood clots" they'll rush you in, but since you've been previously ultrasounded, I don't know if they'd test you at all or if they'd label you a hypochondriac and send you home. You might be able to insist on a CT, but it kind of depends on the hospital, the doc, etc. I really don't know if an MRI would be an improvement; I don't think any of us have had those as a diagnostic tool.

A superficial blood clot can't really go into a deep vein, that isn't really how the circulatory system works. Usually they form in deep veins and travel to smaller ones or get caught in the lungs. I wouldn't put too much weight on the superficial clot.

Despite your symptoms, I'm thinking that the tests really aren't pointing toward clots. If that is the case, then what is causing your symptoms? That might be the questions to ask your doc.

I wish I had something solid to give you, but the tests point toward no clots and I'd be inclined to listen to those. But, if the anxiety is keeping you up at night, I'd head for the ER. "
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Reply #2 - 12/22/11  9:37pm
" Since it looks like they have ruled out dvt, I would go to dr and have them start looking for other causes. "
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Reply #3 - 12/23/11  9:55am
" I agree exactly with what TossNTurn said, and she touched all the same points I would have commented on too. While symptomatically it sounds like it COULD be DVT/PE, the testing would seem to indicate it isn't. And I'm saying this as someone whose initial diagnosis was missed so I especially tend to be overcautious in this type of situation. Older clots are actually easier to find than newer clots, so if a clot would have been missed, it would be most likely in one of your earlier tests. I've also never heard of using an MRI to diagnose PE, so I don't know that's necessarily an option. The fact that you had good results on your lung function test and ECG, with normal pulse ox, that's all really favoring what your doctors have said. I agree that you should probably continue pursuing this issue with your doctor because while you may not have blood clots, maybe there is some other problem which needs taken care of, considering this has been a months-long problem for you.

I wish you the best and hope you find out what's going on soon. "
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Reply #4 - 12/23/11  11:54am
" Hi Guys,

Thanks so much for the responses, Iv been back to my docotors today and they are still adamint its not and all my results eg oxegyn levels are all normal.

The pain in my back is still really sore when i breathe.

They still wont send me for a CT scan which is a shame as atleast then i would know.

Yes i have had 3 d-dimmer tests as well which have all came back fine.

Thats good to now about the superficial clot. i was quite worried about that.

Is it possible the clot moved or broke away and thats why it was missed on the last ultrasound? The first two scans were not done very well but i could not complain about the third scan. The only thing i can think of is the clot had broke away and moved from the leg and was on its way to my chest and thats why the scan came back clear?

Or would there still be something there to indicate a clot? "
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Reply #5 - 12/23/11  3:51pm
" Are you experiencing a lot of anxiety? That can cause some funny feelings when you breath. I'm not dismissing your symptoms, and I have no idea if you have a clot or not. We can only assume you don't given that you've had so many tests. But we're not doctors and so if you really believe you have a PE, then TNT's suggestion about going to the ER, may be something to consider. "
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Reply #6 - 12/23/11  6:03pm
" To answer your question about whether the clot could have moved between the first scans and the last, again it's kind of an 'anything's possible' scenario. There are a few people I've seen here who were diagnosed with PE, never knew they had a DVT and had some pretty thorough testing to try to figure out where it originated but never figured it out. So It's possible. I don't say this to mean that it's probable that's what happened, because if that were the case, you really still should have had a positive d-dimer since your blood still was clotting somewhere.

I'm like RMB I'd hate to steer someone in the direction of not seeking treatment - I mean clots can sometimes be hard to diagnose, though that's usually just because neither the patient nor the doctor thought of it; they're not usually horribly hard to find if you'e looking for them, although I am an example of the fact that there can be exceptions even to that. I am, however, a big believer in having the doctor give me a diagnosis, not just exclude a diagnosis. By which I mean if you think it's a blood clot, and your doctor says it isn't, then the doctor should give you something convincing that it is, not just say what it isn't. And hopefully the diagnosis is something which makes sense to you. When you saw your doctor today were there any other ideas about what is causing the pains? Also, are your symptoms improving at all? Is your leg still swollen, are you always out of breath or do you find that if you get distracted and aren't thinking about it that you do okay?

I wish we could give you a better answer, but of course if your doctors can't, we can't either; we can just share what we know of living DVT and/or PE, and the information we know about the testing. I really do hope things will improve for you soon. "
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Reply #7 - 12/23/11  7:47pm
" Have they talked to you about pleurisy or pneumonia or anything else that can cause chest pain? It is possible that your lungs and leg are unrelated and you've got other stuff going on that are causing your issues. My mother had leg pain and lung pain at the same time but it was a heart issue (blood was pooling just because the heart wasn't doing well) not a clot issue. There ARE other things that can cause these issues.

Of course, at this point, the anxiety could be causing some problems too. I don't say that to dismiss you ... I've been in the ER twice because of pains that turned out to be anxiety and those symptoms can be VERY real ...

If your d-dimers were negative, it seems pretty unlikely that you've got clots. I would really start thinking outside the "clot box" if you want to figure out what is going on.

Again, though, if you really think it is PEs, go to the ER and have them scan you. Clots are nothing to mess around with. "
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Reply #8 - 12/23/11  8:18pm
" Again thank you so much for the replys. You guys are so helpfull.

In all honesty yes iam anxious but i dont agree with the doctors that this is causing my symptoms, I feel like im only anxious because of how i feel.

I have already been to the ER and because i have already had scans and had blood tests which were all negatuve they will not consider a clot.

The thing is i have already been told i more than likley have clotting but in a superficial vien in my arm from a IV that was placed in my arm when i was down the hospital. This took place in between the second and and third blood test. The third blood test took place over a week after the IV was placed so i would of thought my d-dimer would of been raised but wasnt.

The only other example they gave me of whats causing my pain is anxiety but i dont believe this to be the cause as the pain in my chest started before i was anxious about everything . It started when i was inbetween my first and second scan. But over time it has gotten worse and spread to my back.

My leg is no longer swollen and they pain isnt as bad as what it was but the pain does still occour randomly through out they day. When it does it hurt it feels like a bad bruise. I dont feel out of breathe unless im doing something physical. I work in a school and im normally quite a fit and healthy guy. about 4 months ago i would be running 4 miles every couple of days and walking up a couple of flights of stairs in the school gets me short of breath.

I do have and have had bad post nasal drip and i have the need to clear my throat all the time which when my chest pains started and i had the clear scans i thought i could have a chest infection and this was causing my problems. I was not worried and i had a course of antibiotics, i was not anxious and thought this was a valid reason for my pain. The pain did not subside but did get worse and i went back to the doctors who then gave me a course of steroids. This also did not help. I went back to the doctors and thats when i had a chest xray. When this came back clear ( which i guess would eliminate the pleurisy or pneumonia and any other infection) was when i started to really become worried as i was originaly conivnced my symptoms were not nothing to worry about.

Im really not sure what else could be causing my symptoms with a clear xray?

I think im most afraid of a clot because one i had the scare of a dvt a couple of weeks before the chest pain started and second becuase this is the most nasty outcome possible. Also it very dangerous and anything terrible could happen at anytime.

I did take a week off work last week when i had the clear chest xray buit this week i have been to work and my symptoms have not gone and iv also still done all of my normal activities outside of work and no matter how distracted i am the pain does not get better. I have been trying to believe the diagnosis of anxiety but it just does not improve at all

Im not looking for a deffinite answer on here so dont worry you guys will not put me of seeking an answer and i thank you guys for putting your input in to my situation it really does help. I just dont want dismiss what symptoms i do have incase they are serious but also i dont want to appear like a hypocondriac and be down ER and my doctors and taking up there time when someone else might need it more than me. I dont feel like my symptoms are caused by anxiety and i have not been given a better explanation if i had then i would not be worried but as they cant im left with the worry that this is what it is and the fact that i cant not get a CT scan to check is really bothering me.

I take it you guys have had CT scans? Do you know how bad a Ct scan is for you? How much radiation do they give and whats the chances of having a bad reaction to the contrast? "
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Reply #9 - 12/24/11  11:24am
" The three of us have had multiple CTs because we've had PEs. I have no idea how much radiation. I don't really worry about it. I've never had a bad reaction to contrast.

If you really suspect you have a PE, do not waste your time here fishing for information. Get to the ER, maybe a different ER than the hospital you've been going to. And if you're not happy with the care you've been given thus far, get another doctor. I'm sorry but I don't know what else we can tell you. "
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Reply #10 - 12/24/11  3:33pm
" Yep, quite a few CTs. I've never asked about the radiation and have never had a reaction to the contrast. But really, it was critical for me, since I've had multiple clotting incidents.

If you get a CT and it is negative, what will you try then?

Best wishes! "

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