LUPUS UK
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Myocardial perfusion scans

In case anyone else has had this suggested to them, here's my experience this week. Basically, it's a radionuclid scan of the heart to see if there are any problems with coronary vessel narrowing etc.

First, you get ECG monitored under stress. Apparently this used to be done with a treadmill, but now they use a iv injection of a coronary vasodilator called Rapiscan (regadenoson) to simulate heavy exertion. The consultant squirts it in and makes some reassuring noises in the hope that nothing bad happens - I was told that I might only notice a feeling like wanting to take a few deep breaths. In practice, I got quickened breathing, chest tightening, a racing heart and a thumping headache - not nice at all!

After this, you have to eat something fatty, lie down for a bit, then get put in a scanner for about 20 minutes.

The whole procedure is repeated on another day but without the stress part.

One interesting thing for me was finding that although the Rapiscan is said to wear off within minutes, I felt totally wiped out for about 24 hours. It will be an anxious wait before the results arrive in a couple of weeks. x

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Never heard of this kind of test before. I'm hoping for all the best from the tests, and that you get a chance to recover from Rapiscan x

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Thank you x

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Thank you for posting this. I had a 'cardiac event' last month, at the gym of all places. I have since had a positive stress echo (supine bike, not drugs) and see cardiology next week to find out what's next, since stress echo is only a screening. I appreciate your info on the details and hope the wait isn't too torturous! I felt wiped out by my test and it really ended up taking a week to feel much better. I also just finished a 30 day event monitor/telemetry. My rheumy return appointment is two weeks after the cardiologist. Oh, the joy of these blasted diseases- they bring unwanted friends!

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Thanks Drunnerchick, Ive had a few echos, but my heart lies at an unusual angle, apparently, so interpretation is problematic. Fair play, the NHS seems to be giving me gold standard investigations. The bloke after me was clearly very overweight but happily toddled off to the canteen straight after his test while I was barely able to sit straight in the chair after mine. I have a doomy sort of feeling about how badly affected I was, so it is kinda reassuring that you were also knocked back...and you are so right about the unwelcome companions we now find in our lives. Hope yours all turn out to be only phantoms X

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I appreciate your good wishes. I am not in the U.K., but you are a friendly bunch who clearly support each other. I am, like many others currently working on several partners in crime (diagnoses) that seem to puzzle doctors. Usually it's because they think they know SO much and don't listen to anything the patient says that goes against their preconceived ideas or textbook examples. I was first diagnosed with seroneg RA, then additionally possible Sjogren's. Now they are leaning toward Rhupus and SS. They took me off MTX in March to let it show itself and I have had the usual rashes, oral ulcers, joint issues, fatigue etc., along with the added bonus of cardiac dyskinesia/akinesia (LV) . I'm not sure this is how they thought it would show up. Oh, I developed vestibular migraines in April too. (Thank you all for letting me vent!!). Hang in there whisperit! We all become experts on workarounds in this business. I just finished my FEMA disaster responder training last month and could be deployed anywhere there is a natural disaster. First rule is to take care of yourself and your safety. You can't save anyone else if you don't take care of yourself. Words to live by on the team and in application here. I'm still learning!

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You're right again - I've found that my instincts are generally accurate when it comes to self diagnosis. On the crime-busting theme, vestibular migraines have got to right up there in the Rogues Gallery of heinous crimes against humanity, so I do hope that gets resolved. Disaster deployment work sounds exciting - but i hope not to meet you in that capacity anytime soon x

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I've been in vestibular rehab since January after I had my second fall in less than two years. I actually thought my incident at the gym was vestibular so I declined them calling paramedics (I used to be in that business- for other people). I did notify my primary and saw her the next day. She ordered all the heart tests and the consult. I don't want to see you in a disaster either! I will only be deployed locally if it's something huge and non-terrorism related. Migraine and CNS headaches can be lupus related and migraine can be a risk for CV- MI and stroke. Luck of the draw I guess. I appreciate you good humor!

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Hi Whisperit

That sounded like a very unpleasant test!. Interesting you had a reaction to the vasodilator used. It might well provide an answer to your symptoms, hope it does without being too worrying. Good luck for the results, do you know how long to wait?. X

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Thanks misty,

Yes, tbh I am stressing out a bit now. My response to the challenge was so bad that I am fretting that it indicates my heart has been damaged more than the temporary pericarditis that I have been suspecting up to now. but it will take 2 weeks before its reported on, apparently. Just to add to my woes, I looked at the scales as they weighed me, and discovered that I have put on 2 stone since these issues started - that's 2 whole stones of pure fat in 2 years! :( x

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Two weeks can seem forever when we're waiting for something important Whisperit I do hope you get an answer but not too nasty. Fingers tightly crossed for you. It's horrible waiting and worrying. As to weight, that's tough but if you cut down your portion size and reduce carbs and sugar as much as you can you will lose weight despite no activity!. I'm very inactive and keep my weight in check this way despite taking steroids!. It's not easy but doable!. Harry hedgehog sends his best to hedgewig. Hope he still visits you. X

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thanks, misty. I only had a half a croissant this morning! Hedgewig says hi, although lately, we've been invaded by Starlings who are eating (and pooing on) everything! x

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thats the way Whisperit. Seems daunting and dispiriting doesn't it?. Starlings can be too much. Puts the others off!. It's all go on the wildlife front!. X

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