de Musset's sign and aortic insufficiency

[snowathlete]

Since I've had ME/CFS, and gradually getting worse over time, I have a much stronger heartbeat than I used to and it makes me rock. Specifically, my head rocks in time with my heartbeat. I tend to compensate to stop it happening by tensing my neck muscles I think, but if i relax I am litterally rocking gently back and forward with the beat of my heart.
So finally got around to looking it up on google and seems this is called de Musset's sign and it is related to aortic insufficiency, which doesn't sounds great, but I don't really know.

I know that ME/CFS has been linked to cardiovascular problems, but I haven't followed much of that, only a little I heard Cheney say in a video a year or two ago and I remember that parvo b19 which I have very high IgG levels for can cause heart problems.

So, anyone else got this?
Anyone got any knowledge on it?
Is this something I should be concerned about?
Should I see my GP?
Any particular test I need to ask for (not that the NHS are likely to listen to me)?

 

[snowathlete]

Bump

 

[merylg]

See GP ASAP & say you want to get a cardiac echo done. Not sure how your system works. Also ask for a referral to see a cardiologist. I saw a private cardio who actually did his own echo testing on his patients.

I've also had an echo through the public hospital system. Referrals to cardiologist & for echo though were via Mito Prof of Neurogenetics as part of Mito workup. There's probably a lot of ways to access an echo if it's indicated. Good luck!

 

[merylg]

PS If you're well enough they would run a stress echo as well (where you run on a treadmill)...but if you are too sick/weak and/or it is too much risk they would not put you through that (I don't think )

 

[justy]

Hi Snow - it may be worth a trip to the GP - we always have to remember that evry thing is not always down to the M.E.

Have you had this a long time or is it a new thing? I tend not to worry so much about things I have had for a long time. are you seeing KDM anytime soon? could you e mail him? he is a cardiologist I believe. If you have an echo you could send him the results (if you can convince the NHS to release them that is...)

 

[SDSue]

@snowathlete I have this! (as does my elderly dog lol)

Were you able to get any more information or testing? I am headed to Klimas's clinic later this month for my first visit. I will also ask there. I've suspected the need to see a cardiologist for quite some time, but have put it off as I just can't handle being patronized and told I'm "anxious" one more time.

 

[snowathlete]

@snowathlete I have this! (as does my elderly dog lol)

Were you able to get any more information or testing? I am headed to Klimas's clinic later this month for my first visit. I will also ask there. I've suspected the need to see a cardiologist for quite some time, but have put it off as I just can't handle being patronized and told I'm "anxious" one more time.

Hey SDSue, it's nice not to be alone!
I had an ECG scan last week. Need to arrange a follow up appointment with my GP. I expect the ECG to be 'normal' and expect to encounter greater resistance now from my GP as next would probably mean a refferal, but hopefully I will get that. I expect a cardiologist would want to run a stress test, which I wont do, so I hope I can convince them to run something more appropriate and ME friendly to try and figure out whats going on.

 

[SDSue]

It's exhausting trying to get appropriate care, isn't it? I can hardly wait to see the cardiologist's face when I report deMusset's sign. lol Will I get labeled "hyper-vigilant", "anxious", or just plain "nuts".

Let's hope we don't actually have aortic insufficiency - Rx options aren't good for ME patients, and I'm not exactly keen on surgery to replace any valves.

Glad to know I'm not the only one, too! I hope you get adequate care and a good report.

 

[snowathlete]

It's exhausting trying to get appropriate care, isn't it? I can hardly wait to see the cardiologist's face when I report deMusset's sign. lol Will I get labeled "hyper-vigilant", "anxious", or just plain "nuts".

Let's hope we don't actually have aortic insufficiency - Rx options aren't good for ME patients, and I'm not exactly keen on surgery to replace any valves.

Glad to know I'm not the only one, too! I hope you get adequate care and a good report.

Yeah, when I told my GP she just didn't look like she knew what that meant at all. At least the cardiologist would, but my guess is that they usually only see extreme examples. Not really looking forward to it, but i know it's not normal so...