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Probable angina diagnosis. Help

Posted , 3 users are following.

jill71159
jill71159

I have quite a cardiac history - rheumatic fever; malignant hyperpyraxia and recently breathlessness.  I have sort of got used to the symptoms such as not being able to breathe in properly, extreme fatigue, jaw, neck and left arm pain etc.  I should say that I also have autism, arthritis, drug induced haemophilia spina bifida, snapping hips etc etc.  Well anyway my balance is iffy so most time now I use a mobility buggy although 3 weeks ago I was out without my buggy (my chest was too bad to enable me to lift the rechid thing into the car) when I got the breathlessness, went grey, clammy, felt nauseous and lost feeling in my left leg.  

I was out at a charity event and the completely incompetant first aider put it down as a panic attack without troubling to get any medical history.

The scary thing is I then drove home and it was 2 days before we got seen by our own GP.  She dispensed a GTN spray and referred me to the Rapid Access Chest pain clinic.  This clinic are refusing to see me and have put me on their general list with a wait of about 6 months despite the fact that I have a learning disabled care plan in place that specifies every consultation be treated as a emergency because of my anxiety and because the autism can mask or muddle the symptoms often not showing their true extent.

I now find that I am regularly getting a "total power switch off" to my left leg causing falls and these take longer and longer to improve.  Some days I can be half an hour waiting for my leg to start working enough for me to stand up.

Any advice on what I could do to make the hospital wake up and take this a bit more seriously?  

I have already been diagnosed with "Sudden Drop" in January and had both a 24 hour 3 lead and a 12 lead ECG at that time

1 like, 4 replies

4 Replies

  • samuels
    samuels jill71159

    Posted

    Hello Jill,

    Sorry to hear of your experiences, I suffer from Prinzmetal angina and they come in clusters and require attendence at our local hospitals emergency department so I know your feelings of despair, how ever  I have now learnt from these experiences and so has the emergency department.

    Are your ECG's showing up normal even though you have stated you have a cardiac history ?  This could be one of the reasons why they are making you wait, Anxiety is what it is and it won't kill anyone and also doctors play on this as well .

    The only suggestion I can offer you is to write to the compliments/complaints liason officer(that's what they are called where I'm from) at your local hospital and they will launch a full investigation .

  • jill71159
    jill71159

    Posted

    Yes.  The ECGs have failed to identify the problem but as a former dance teacher I know the difference between a few pulled muscles and something serious.  Also you are right when they have the "excuse" of autism/anxiety they do seem to believe that they have free rein to ignore clinical symptoms and mark it off as just the anxiety.

    My real issue is that currently I am actually afraid to venture out and with other problems every week that passes mean my legs get weaker so by the time they address the problem I will have lost a degree of function that will not come back.  I suppose I am of the opinion that the sooner one works out what is going on and addresses it - good or bad - the sooner we can arrest that downturn.

    • samuels
      samuels jill71159

      Posted

      Have you actually had a heart attack, stemi or nstemi ? I use to suffer panic/anxiety attacks for just on 20 years and "touch wood" I haven't had one in the last 3 years,however I was still having Agoraphobia problems but was slowly getting on top of them and then one day I wasn't feeling so good and experiencing some pretty bad chest pains, as it was my normal prinzmetal angina pains,  I ignored them for the best part of the day because I thought I knew what it was, the chest pain got to much for me so called an ambulance and was taken into our local emergency department, ECG was normal and they took some blood to send off to their lab, I was then shoved out into the waiting room, after  about an hour a nurse came and got me got me to lie down so as she could do another ECG and whilst she was doing that an emergency doctor came over to me and said I'd suffered a mild heart attack and it's what they call an nstemi, even that mild heart attack knocked me around, it bought all my Agoraphobia work un done.....From that day onwards I was scared to drive and go out anywhere alone for fear of having another heart attack, Cardiac Re-Hab informed me that this was a normal response after experiencing a heart event. I've had 2 more nstemi's since then and I'm still to scared to go out by myself, for me it's a pyscological problem I have to get on top of...The Agoraphobia...

      Because of the rarity of prinzmetal angina some emregency doctors just fob me off and make me wait in the waiting room even after arriving via ambulance, the other doctors that actually know what they are talking about actually find me a bed straight away  and get the pain relief into me and send off bloods immedietly because of what has happened in the past, ECG being normal but had raised troponins, this is what they call an nstemi. I actually had an emergency doctor ask me "what has bought you in today " I went on to explain and when I finished he looked at me blankly and said "what's prinzmetal angina..... I couldn't believe it, I mean he's a doctor,albeit a young one, they must not teach to much about angina at medical school. Both Cardiology and the emergency department don't have a management plan in place, Obviously there is no real communication between the 2 as my cardiologist has informed me that there is no "cure" for prinzmetal angina and I would have to learn to cope with this and accept that when the pain gets to bad to call an ambulance. Iv'e had attitude problems from both the paramedics and doctors, not all but a few of them,they make you feel worthless and waste taxpayers money, I wasn't going to accept this kind of behavoir so I called up our local hospital  liason officer and they sorted a fair bit of it out for me, every now and then there's a switch around of emergency doctors (rotations I think they call them) and am strarting to experience these feelings again, so just 2 weeks ago I had to re- write a letter to the liason officer again informing them it's starting to happen again, Don't get me wrong there are some very good emergency doctors there and actually do understand my problem, some even pick up my case and follow through with me but if they are flat out and because it is a public hospital I get who ever is assigned to my case and of lately it's the young learners smile.

      Just hang in there and make a noise, even if it is making a complaint to the relevent person(s) to get the ball rolling

  • cathymcphee
    cathymcphee jill71159

    Posted

    Hey Jill, welcome to the forum. Some of the symptoms you mentioned can be angina, but might also be something else. The leg thing is unrelated, but when my fibromyalgia was bad my legs did that, so I totally understand the safety concern you have. Having a gp that you have a good relationship with is key with any chronic health condition. See if there is anything the gp can do with the leg situation (figuring out what the cause is and possible treatments, especially physical therapy).

    The shortness of breath, fatigue and grey color can be due to worsening heart valve function (specifically the mitral valve), given your history of Rheumatic Fever, as those are the most common symptoms of that. That is not to say that is what it is, only that it is a possibility given your history. That can also be caused by left sided heart failure (just means that the left ventricle isn'tppumping efficiently, not that it is not working at all), which can be exacerbated by a poorly functioning mitral valve also. An echocardiogram (ultrasound of the heart) is the usual way this is evaluated. The only other way is by heart catheterization (which from what you have shared, is not indicated at this time) or invasive monitoring in an ICU when a patient is on a ventilator (not quite as accurate, rarely done and completely not indicated in your case). A bad mitral valve and early to mid-stages of heart failure won't show on a regular ekg (or ecg, depending on what country you live in, it will be called one of those two names). It also will not show up on the three-day tracing you had done. Those are great tests for many things, but no one test shows everything. Given that info, what you need is an echocardiogram (called an echo for short). Next time you have the symptoms you described (minus the leg), try the nitro. If it doesn't work, it's not angina.

    Now that you have that info, you can begin asking for some appropriate things. First go back to your gp and ask for the previously mentioned items. Let them know about the delay you are experiencing at the rapid access clinic. Depending on a number of things, your gp might be able to speed things up. If they can't, ask what they would recommend you do on your own. Sometimes there are things that can be done by the patient, and not initiated by the doc, although that is not the norm. Next, Samuel is absolutely correct in contacting the patient advocate/liaison. If you are getting resistance from anyone alone the way, be quick to tell them that you have Autism, as this will likely play in your favor, or have a friend/family membe call and tell them that. If it gets to needing to call the patient advocate, being able to say that you told the prior people that and they wouldn't or couldn't help you. They tend to be pretty sympathetic people and would probably go to bat for you, given that info.

    Good luck, and I hope it gets resolved quickly.

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