I am ET JAK+. My platelets are at 519 right now. A few days ago I began having dizzy spells. It got so bad after a few days I had decided to go to my primary care doctor after work. During work out of no where while I was walking I had a tightness in my chest at the same time I felt like I was kicked in the top of my back. It became hard to take deep breath’s. The pain was severe on really deep breath’s. Felt like a Charlie horse or muscle strain but I wasn’t doing anything when it happened. Went to dr. Tested negative for Covid, ekg was okay. I told them it’s not my heart it’s my chest. They did nothing. Told me to follow up with my hematologist and cardiologist and go to emergency room if it got worse. 2 days later, yesterday I saw my hematologist he immediately said it sounds like a blood clot. I am scheduled for a chest scan this morning. Has anyone else had anything like this? I’m still short of breath, lightheaded, extremely tired, and the pain is still there but not as bad.
Lightheaded and chest/back pain possible blood c... - MPN Voice
Lightheaded and chest/back pain possible blood clot?
Hello Tingle20,
haven't had what you experience - and I hope you are getting well soon.
Anyhow... to me that sounds a lot like a pulmonary embolism (chest pain, short of breath).
I don't know if that is a monetary issue for you or not, but I would go to a hospital and tell them exactly your symptoms PLUS the fact that you suffer from man MPN ET (with an increased risk of pulmonary embolism / thrombosis).
I had some pain in my legs and got a check from my primary care doctor who handed me over to a specialist immediately - luckily they didn't find anything.
Regards and all the best
That doesn't mean panic... just want to stress that you shouldn't let yourself get intimidated by any doctor when you feel not well and don't understand why.
Hoping to get some answers today after my chest scan. Thank you.
I am very glad you are having a scan. Please please go to A&E straightaway if you have this kind of sensation again when you get home. In 2016 I had a tight weird feeling in my upper back, chest and jaw. It turned out to be viral myocarditis which caused heart failure. All the symptoms indicated a heart attack though, so there are all kinds of possible explanations for your symptoms. Whatever it is, treatment of heart issues is brilliant these days but hospital is definitely the best place to be. Good luck.
Hi Tingle20, what an awful experience for you, I do hope that all is ok and that it isn't a clot. Take care of yourself, Maz x
Wow good luck hope it’s sorted soon let us know the outcome x
We mpners can’t be ignored 😡. It makes me cross to think about how you were treated.
I was very upset when I left the doctors office . I know my body and I know something is wrong.
Any news yet please Tingle?I've been concerned. I expect we all have - Daisy
No I haven’t heard back from my hematologist. I had the ct scan of my chest yesterday at 10. If they don’t call by lunch today I’m calling them. I also have an appointment with a cardiologist today. Praying that between the two doctors we can get something figured out. Thank you.
I am sorry to hear about this episode. Hope you get it figured out ASAP. I am sure the results are in at this point and just need to be released by the doc who ordered the CT. I never have waited longer than 24 hours for a report. they are usually ready by the end of the day the imaging is done. FYI - It is a really good idea to request a copy of your imaging on a CD. this allows you to view it yourself and can facilitate a review by a second provider.
Hope you are feeling well ASAP.
I will update when I get my results. Thank you all for your responses and concern.
Whenever you have tightness in chest good to see a cardiologist, better safe than sorry. I was recently diagnosed with Costochondritis after having some similar symptoms, fingers crossed no clot. Best of luck.
Keep at it if you feel something isn’t right. Every time I felt that way, it ended up being something. A few yrs ago it was 2 stents I needed but the diagnosis didn’t come for months. So infuriating because I KNEW something wasn’t right but after seeing 2 drs incl a cardiologist, nothing was found. Kept getting weird pains in both upper arms & chest/stomach. Also fainted for no darn reason & never did that in my life. While at hospital for the stents I was told to see a hematologist for my very high platelets & that’s how I found out I had ET jak2+. My hematologist said the blockages were most likely caused by my ET. My body was telling me something was wrong for months but drs kept missing it. So don’t give up.
Iam so sorry to hear your going through this I have similar experiences I have pmf jak 2 positive I had similar symptoms to you the pain got so bad I went to a and e I was told I was fine given a box of parcetomol and sent home I didn’t make it to the car park and I was rushed back in I had multiple clots in my legs lungs and on the scan it showed extensive portal vein thrombosis unfortunately many doctors dismiss our symptoms as part of condition or they know very little and don’t check you really have fight your corner nobody knows your body better than you so if you feel somethings wrong push them always good luck I will pray you get good results x
I still did not get my results from the ct scan. Offices are now closed so I have to wait till Monday. I did see a cardiologist today. He made me do the stress test and did an ultrasound of my heart. He said since we didn’t get my chest scan results he could look at my heart. If there is a major blood clot in a lung then a certain part of the heart would be enlarged. Thankfully mine was not enlarged. He can’t rule out blood clots but he said I don’t have a big one. He’s waiting on the results of the scan before he does any further testing. I feel between the two doctors I should get some answers. I did find out how bad out of shape I’m in by walking on the treadmill. Definitely need to start doing some sort of exercise. I will post when I know more.
Hi, I’m so sorry to hear that you’ve had this scare, it sounds like you are getting some good investigations into what’s happened. Fingers crossed the results are as positive as they can be. I also have ET, diagnosed in 2009 and amongst other symptoms, had experienced excruciating chest pains over the years. (checked out by / fobbed off by several GPs)! In 2016 I had the worst chest pain I’d ever experienced, and went to my local A&E. Based on my symptoms and a mega high d-dimer score they suspected a PE and immediately gave me blood thinners. The next morning I had a CTPA which didn’t show evidence of a clot and I was sent home with no follow up recommended. I contacted my haem at Guys who immediately referred me for a full cardiology assessment - all clear. My dr didn’t see the CT scan but advised me that there was a small chance a clot may have actually been present. She also advised me that the chest pains could be due to my faulty platelets… at the time I was only on aspirin snd my platelets were typically between 600-800. The solution was low dose peg interferon and it’s been life changing for me. Platelets now consistently below 400. And no chest pain at all for 5 years! Also no migraines, no fatigue etc!
As is often the case for us folk with MPNs, I feel that GPs and regular hospital doctors just don’t understand the strange nuances of our disease. I don’t mean to sound critical, I guess they just don’t see it very often. Having a specialist on board is absolutely essential, and my haematologist’s response to my situation was brilliant - especially compared to the dismissal of the local hospital.
Wishing you well, and hoping you receive some good news. Please keep us updated on the outcome for you? X
Is it possible that you just need blood pressure pills are you on those right now or possibly a change to those pills . it is a good thing that they tested you for covid-19 however did you just have any vaccines for the virus because a lot of people are getting enlarged hearts there's a story of a 16 year old boy who died in Michigan that you can look up from an enlarged heart and fluid around his heart following his Pfizer vaccine this is unfortunately happening a lot in the US I'm not sure where you are but after one let alone two doses the heart is getting enlarged and inflamed with myocarditis
I do take blood pressure medicine and my blood pressure has been good readings. I have had the first dose of the moderna vaccine . I have to get the second one next week.
Are they sure that you didn't have a bad reaction to your first vaccine you may want to think about that before getting your second vaccine I personally had some very bad reactions to the first one I know someone who now has Bell's Palsy because of the first one how soon after your first one did you get these issues with your chest and your heart
I am currently being tested for blood build up in the brain, two nasty seizures which fractured my skull in 2018 have led to this. I have been in isolation most of the pandemic, but my vaccines have not helped my general standard of health, 1st in February 2nd in April [AZ] I am bloody tired all the time, out of breath, lightheaded. I was in hospital at the beginning of last month a complete overhaul [?] and was prescribed aspirin to thin my blood, ok it has improved my lightheadedness a bit, but the tiredness in my legs and pure fatigue is now very dramatic. I exist zombie fashion, stumbling around the house all day, the state of the house has dropped dramatically! I have Schwannomatosis, a rare nerve condition, the day after I had my 2nd jab, two small pin pricks opened up bleeding and a schwannoma formed on my left forearm beside these, which directly has affected the use of my small finger on my left hand pins and needles/numbness. If that is not due to the effect of aspirin and AZ vaccine I really am a silly blood clot?🥴
Further thinking about this [5.30 am] Chest pains February, ECG negative, I have a pigeon chest , so hard to diagnose, heart flutter, as I said FULL medical checkup beginning of last month, June, [MRI, CT scan, heart scan, chest x-ray, etc,] last week, 48 hour heart monitor test [result 2 months]. My symptoms and yours are too similar to be anything else? Thanks Tingle20, my Schwannomatosis [the only person in Ireland with the condition, my own personal specialist] and the AZ vaccine are reacting, there MUST be a link, something in your medical makeup and mine obviously allergic to the vaccine, did you get the Astra Zeneca vaccine, [maybe same blood group?] I take lisinopril for high blood pressure!🤔
Never heard any problems like that with Moderna, AZ yes! Good Luck!
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