Is chronic breathlessness cardio[ pump] or thoracic [ lung ]

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 as system pretending  the angina doesn't exist & sleep apnea  which am borderline comotosing on injestion daily Proved pulse drops  then confused drifting ........I had this before MI [ heart attack ] so had  purchased mobility scooter & WAV  vehicle as could find no assistance even though visiting GPs weekly for 4 years prior, with classic symptons they were not recording pretending making up.

This is happening again with spinal spasms  & fact more more  fatigue, CF & low  thyroid .Very independent .Have to sit to cook, wash up and shower .Cannot exhert self enough to move .Consequently a weight problem tried to address surgically & by eating smaller portions.

When research my symptons I  find heart failure mentioned.But GP says all OK except heart on borderline on lung x ray

.I think hyperbaric oxygen may help as CPAP machine a waste of time .

With heart attack revived with an angioplasty to find Consultants not recording/ignoring  acute incidents.

If I could put this discussion in a number of groups it might be found there are many others having same problem.NHS Procedures Low Priority.

 

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  • Posted

    Julie Ive had very similar problems , even down to the way treated by NHS.

    This could me cmvd, coronary microvascular disease.

    Those of us who suffer often have daily angina, fatigue, inability to excercise due to condition.

    With cmvd the smaller vessells further down from the main arteries become blocked, go into spasm or restrict when you excercise causing a loss of blood to an area of your heart.

    This causes angina, in other words the more we do the more we hurt ourselves even to the point where we are having micro heart attacks.  Because the heart is not good at saying its in pain it just says PAIN loudly even if only a small area of heart is affected.

    When blood tests are done in ED it may not show signs of a heart attack or problem as the levels of enzymes released are very small as only small area of heart affected and may not show up on an ECG.

    Speak to your cardiologist about it, test can be done to detect signs of condition.

     https://www.facebook.com/pages/Coronary-Microvascular-Disease-CMVD/113802395408882

     

    The site above has lots of info or google cmvd.

    Regards

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  • Posted

    Hi Julie, I have replied in detail but as it contained a link its been moderated.

    It could be coronary microvascular disease, google cmvd or cardiac syndrome x.

    If you had stents put in when you had heart attack it could be that you have a stent that has started to block.

    cmvd causes daily angina and is known to have many links to sleep apnea.

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  • Posted

    Hi Julie,

    You sound as though you are experiencing what I am right at this minute, Due to it being winter where I am my Prinzmetal Angina is acting up something shocking and because I have had countless visits to our ER they are now just fobbing me off regardless of Cardiologists instructions.

    I was diagnosed with MVD about 10-12 years ago, MVD is the small blood vessels in your heart that can't be seen by the naked eye even via catheterization (Angiogram) and it does not show up on an ECG (EKG), it is a very painful thing and gives off angina like symptoms there are medications available but will not fix the problem, unfortunately there is no cure for MVD or Prinzmetal Angina, my coronary arteries have started to spasm now hence the new diagnosis, I've had 2 NSTEMI's due to the Prinzmetal Angina and a 50 -60 % occlusion was found in my right coronary artery which was being treated medically but I don't think it is working as I can't tolerate any kind of statin, I also suffer from severe sleep apnea which requires CPAP, it does not help me the way it is intended but it does take a hell of a lot of strain off my heart.

    It was only last week I had called out our ER doctors and my GP and asked why was I being treated the way I was, the answer they gave me was that because the ECG was normal there is no emergency and nothing clinically that could be done and no events are ever recorded unless my Troponins come back positive . So basically as you can see if nothing happened they don't record it, they record your ER visit  and the type of symptoms and then write out a letter to our GP's...it's wrong I know but that's what they do and by the sounds of it they do it your end as well.

    My Cardiologist has told me what is wrong, it has been diagnosed and yet because I haven't had another heart attack since last year they now just check my ECG and send me on my way...no pain relief ...nothing...I've suffed 3 NSTEMI's which are only mild heart attacks compared to STEMI's (full blown heart attacks with a complete blockage. I did suffer chronic fatigue syndrome years ago and I had absolutely no energy what so ever and slept a lot sometimes all day and all night I never experienced angina symptoms with CFS, My breathlesness became worse this year with my angina.You need to sart jumping up and down, start making some noise so that they will give you answers , I've had to do this on several occassions and finally I came accross a doctor that concurred with the Prinzmetal Angina and he went into great detail and in laymans terms in what was causing it and that I have to live with it for the rest of my life unless some magical cure comes out, we are hoping a yet to be released cholestrol medication (injectable) may help as they have found this new drug has minimal side effects, I'm on the list for when it is released .

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    • Posted

      Hi thanks for replying .

      I take 2 ranidine & 2 GTN when acute  & will do x2 then call 999.

      Fortunately this has worked ever since was hospitalised x2  to no avail.

      The temporary acute classic warning signseg problems going uphill  ,before MI were diagnosed as hiatus hernia?! hence the ranitidine.Since comotose on injestion daily .They were also recorded as mental & refuse to change.

      now having syncope investigated causing bother to Telecare system  when often takes 6 calls to rouse.

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    • Posted

      Hi Julie;

      As I said in  previous comment, I know where you are coming from and it is extremely frustrating when they start putting it down to as " in our heads" I thought I had my problems sorted out but because of  continous visits to our ED and different doctors I'm starting to get different diagnosises from various emergency doctors again....because my notes are quite extensive as are my trips to ED they simply don't read all the way back or back to a point of interest that I make mention to them. I know they are definately getting sick of seeing me and I get embarassed calling for an ambulance because I know what it is but I'm unable to get rid of the pain when it gets to bad or wont go after  copius amounts of GTN spray, the spray works initially for about 1/2 an hour but the spasms return and are stronger, it has been explained to me that because of other anti anginal medication that I'm on the GTN isn't as effective in the longer periods of attacks, It's rather hard to explain but it's as though I can feel the medication and the spasms are "fighting" each other, the pain is now fluctuating up and down rather than being constant for around 30 minutes at a time, Know what I mean ? strange I know but that's what it feels like, medication fighting the pain and vice verca..... I'm on 480 mg's of Diltiazem daily as well as other medications but I have found the increase of Diltiazem has made a difference as at the beginning of the year I was hardly ever at our hospitals ED, then my pharmacy messed up one of my medications and I was unaware (as you get to trust your pharmacist when you have used them for years) I was only taking half my dose of Nicorandil daily therefore was making one trip a week into the ED, and the more I think about it, it's a wonder the doctors didn't pick up on this as they check our medications on file compared to what's in my medication bag ( where possible we are required to take our medications in to ED when picked up by an Ambulance) then with our cold weather coming up my trips became more frequent up to 3 times a week and the doctors don't believe me when I tell them it's the cold weather setting them off, I take precautions in these incidences but I'm the type of person that is always running "hot" I would rather be cool than warm or hot, it's just the way I am as I was raised in our Highlands where the cold weather was more severe than our capital city, and the fact that I can't always work inside, I've always been an out doorsy person.

      Can I ask...I'm having trouble understanding you comment about comotosing on injections, which injections and what are the injections suppose to be treating ? Are you suffering low/high  blood pressure ? are you on any heart medications or anti anginal medications at all (apart from the GTN) ? If you have had an MI  and have  a stent(s) in place one would think a doctor would have you on some medication of some sort apart from statins ? Do you have a health ombudsman where you are ? that would be my next step if you aren't getting the answers you require.

      You said that you suffered an MI, now that has to be recorded on the hospitals records and yours along with a letter sent out to your GP (family doctor) do  you know if it has been recorded ? That would make a good starting point if you have the proof if you are pursuing the matter of where doctors are "fobbing" you off as you say what maybe happening.

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  • Posted

    Hi Folks,

    Thanks for replying its good to think I am not alone as like a full time job.My late Father 90+ a pharmacist had weak heart valves on top of prostrate cancer & athritus etc.He put it down to Rhematic fever as a child.

    I recently waited ages for appt with vascular expert professor- lipoedema /lymphoedema , in London who let me be seen  by another not recording oedema was in feet not legs.Since I had travelled over 100 miles I was not happy as to be given no diagnosis tratment before had to go to Belgium for procedure wouldn't do here[abdomnoplasty ]to enable other procedures blocked from even privately..Suspect it was ascites

    Anaethetists hate me as too risky .My Dentist who is an Anaethetist  too says often pulse drops dangerously low.Have had terrible trouble accessing  dental treatment too here and abroad .Feelpain acutely .Was diagnosed but left in limbo.

    My late Mother had polymyalgia rhematica & suspect GCA but because she had such severe multi infart dementia it was left....

    This happened before MI [ heart attack]- They were recording my concern of them ignoring & non referring as mental symptons I also have chronic utis acute 3 weekly.

    It is now happening again !No wonder GPs overworked if the admin using Choose & Book to delay matters further .

    They appear more concerned about balancing the books blaming their computers' mistakes on the patients.

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  • Posted

    Have been investigating this coil/valve trial [ empysema COPD ]which NHS deliberately delaying about, as successful in Germany, to find the GP wants to send me to Slimming World rather than what you suggest , when knows symptons are heart failure & possibly syncope I have CFS & low thyroid as well as heart attack because of poor pumping .Lipoedema was diagnosed last year  but not treated & know have done all I can re weight  re gastric band, abdomnoplasty  & cannot exercise .Have classic heart failure kidney disease symptons.Dieted since age 9 now eating child portions.

    Trouble is tried everywhere else [ Surgeries] to find same discrimination & blaming.They know I have apnea &  CPAP machine doesn't work .I am very upset when a Doctor behaves like that.

    Suspect they have not done appropriate tests  as did not do a back x ray for spinal spasms either.

    Unfortunately cannot take up legally or governmentally  as noone seeing Constitution observed .

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  • Posted

    Hi everyone , check out Cardio X discussion as the Royal Brompton Group it may be be of interest. I've now got GP wanting to send me to Slimming World

    when knows history .This is outrageous when know that heart attack was poor oxygen pumping, CFS & Low thyroid & possible syncope.

    Injection was supposed to mean eating /ingestion however feel injection dental acutely so need sedation often even at hairdressers!Chronic lipoedema /cellulitus I wonder.?

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