Does MND damage the heart?

[TinyLady]

So yesterday I was rushed into A and E (not our favourite place) and there is something on my ECG which suggests I have have had a heart attack. I'm only 47 and not overweight and was previously pretty fit and active. I'm a little shocked. They are saying not MND related.

So... here I am. Not being well looked after, stuck in A and E and exhausted beyond belief waiting to see the cardiologist.

I read somewhere that good support and care of someone with MND can prolong and improve their quality of life. Maybe Im the example of what the opposite looks like... or I'm extremely unlucky.

[Onein300]

Hi there!!

Its not likely to be MND.

Sadly crap happens even if we have MND. I know because I had to have a triple bypass 6 years ago with mnd!!!! You can imagine my thoughts when I was told that!

I had had symptoms which didn’t feel like mnd and I forced my doctor to get me an angiogram. The rest is history.

I was a runner, cyclist, skier etc etc but still managed to get 90% blocked arteries.

But, yours may be nothing. The ECG tells you the history of your heart, and they will do a Trophine blood test.

Heart attacks can be small and may not be caused by blocked arteries. I also had a doctor tell me I had had a heart attack but my cardiologist said I had not. Misinterpretation of tests by the a&e doc.

Take care.

Are you feeling rough? What made you go to a&e?

Lee

[TinyLady]

Thanks Lee, reassuring to hear your history and having met you I know you are doing (relatively speaking) well.

Yes, was feeling really rough, chest pain, back pain, spaced out etc. They messed up the first blood test so had to do another. Hence still stuck here. But they were concerned enough to give me aspirin and GTN spray which helped. Just got to wait and see. Desperate to get home to bed...

[Claireflo]

TinyLady so sorry to hear you've been feeling so unwell and that they are looking at whether you've had a heart attack. It must be very scary and with all the pressure on the NHS its not a great time to be in hospital (although when is it ever). I hope it will end up better news and you'll be home to your lovely bed for a good rest soon xx

[WheelsOfSteel]

TinyLady Oh you poor thing - lousy time to be stuck in hospital (now more than ever).
Hope you get home soon.

[JamesW]

I hope you get well soon 🙏

Unfortunately, just because we have MND does not stop us having other things wrong with us, a couple of years ago I nearly bought the farm with a pulmonary embolism 🥺

[GillB]

What rotten luck and what an awful time to be stuck in hospital. I hope you get home soon xx

[Ellie]

TinyLady 😥😥😥🤗🤗🤗

Whenever you can, please update us.

In the meantime, sending love xx

[Zante]

TinyLady thinking of you. as Ellie says when you can let us know any outcomes and how you are. xx

[TinyLady]

Thanks everyone. I feel pretty rubbish and a bit sick which is unlike me. But otherwise fairly pain free but exhausted.

Apparently my heart rate is far too high and my ECG and a blood test suggest there might be a clot. They think it is because I am quite immobile. So they want to scan my heart with contrast.

Obviously ANYTHING with me has the added risk I'm allergic to anything and everything. So it's hard work for everyone and a fight to get them to realise that we don't want to try too many new things at once and how unwell the allergies can make me.

So now I wait to see what next.. is anyone on blood thinners? Many of us must be pretty immobile and at risk I would think?

[Deb]

Oh my goodness TinyLady what a terrible time you're having ! I'm so sorry you're in hospital.. you must be desperate for your bed and exhausted.

I have been on blood thinners for nearly 4 years. I had a pulmonary embolism following a break to my leg. I started off on injections because it was an emergency but now I take a daily tablet. I don't seem to have side effects but I do need regular blood tests to check the levels are right and heart, kidney liver function.

My symptoms were chest, back pain and i was coughing up blood.My GP had rung the hospital and they gave me the Injection immediately as a precaution .It was then diagnosed with a CT scan with contrast but I wonder how important the contrast is because of your allergies.

I hope with all my heart you get sorted and home soon with the right meds. Sending hugs and thinking of you xxx

[Ellie]

TinyLady Given that it's not a heart attack and if you're clot-free, will you mention the brain fog/memory lapses to the doctors in case it's related.

ALS can effect the autonomic nervous system, one of its functions is regulating heart rate. xx

[Claireflo]

TinyLady I hope they can find a way to do the scan safely and establish if there is a clot.

I’ve previously been on blood thinners as i had 2 PEs on the lung. I had trouble breathing for a number of weeks (assumed it was hayfever/asthma) then got chest pain radiating down my right arm. Similar to Debs I had a few days of injections then daily tablets with regular tests to monitor. I was on that for 8 months then came off medicine, although for the last 3 years I've been on a high daily dose of aspirin due to bad headaches that seem to be linked to the blood clotting condition. I didn't have any side effects from the medication.

I hope they can get it figured out soon and get you comfortable and back home x

[TinyLady]

Claireflo and Deb thank you for sharing your experiences. I am hoping to get home with a tablet to take and job done. Sadly scan needs to be done with contrast. Which needs a larger vein... which I no longer have. Lets just say there might be a joke about how many doctors does it take to put in a cannula... but it gets messy, painful and even when half the rest of the staff and an ultrasound get involved... fails.

So no scan today and I'm sore and exhausted. Goodness knows what plan B is.

Ellie - good advice about the memory issues. I wouldn't describe them as brain fog though. More like total brain deletions. They are getting worse and my carers have noticed too. I'm quite scared but trying to stay positive.

The worst bit is I am in pain from this bed. No marshmallows for me and I am frustrated and tired.

Hugs to all xx

[Piglet]

TinyLady so sorry you’re in hospital. Hope they sort you out so you can get home to your comfy bed. Xx