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Everything posted by Jonno

  1. Hello from the UK, specifically Yorkshire. Can anybody relate to the following? I apologise in advance for the far too many words - I don't know how to reduce them! Over the past 10 years I have suffered intermittently from a disabling disease which usually takes the following course (quick summary!): phase 1: a cluster of cardiac events mainly while at rest - chest pain often with transient ST-T ischemic changes to my ECG and usually with elevated blood pressure and pulse, sometimes rhythm changes (consequence of ischemia??), quite often with a transient increase of about 1C in my temperature. These events come with chronic chest etc pain and noticeably include attacks between midnight and 2 a.m. phase 2: sensory changes: tingling, pain and unpleasant sensations, in particular in my limbs and often with chest pain, sometimes dizziness, sometimes a weird change in my spatial sense of my body, basically feel entirely horrible and my blood pressure and/or pulse go up and down in correlation with how ill I feel, delayed gastrointestinal transit & gastritis. With luck, I recover after some weeks of this. I will then be well for a period of between one month and four years (Four years! What bliss.). No medical test has found anything wrong. In the past 10 years I have had 2 angiograms, 3 gastroscopies, a colonoscopy, multiple echocardiograms, a myocardial perfusion scan, multiple pheochromocytoma tests, an MRI scan of my head, a CT scan of chest and abdomen, a PET scan (for neuroendocrine or other tumours), an EEG, blood tests for everything under the sun, all with the result that nothing was wrong. The NHS has been useless at progressing towards a diagnosis but thankfully a nurse whom my wife knows pointed us in the direction of a London consultant and I paid a small fortune for multiple scans and tests he ordered. His conclusion was that my symptoms might be caused by dysautonomia and I am now waiting for a consultation with Prof Mathias. (I asked my GP for a referral to the NHNN in London but was told I couldn't see a London consultant under ordinary procedures as my local CCG (illegally?) requires an "individual funding request", and at this I decided once again to resort to my cheque (American translation "check") book). I am currently having a miserable time with chest pain and unwellness. When the chest pain is particularly bad or prolonged, we call an ambulance, basically to be given a troponin test and then kicked out when that is ok. The hospital cardiologist is a lovely man who takes me seriously but seems out of his depth. He has prescribed amlodipine (calcium channel blocker), GTN patches and metoprolol (beta blocker). My conclusion is that my cardiovascular system suffers from Prinzmetal's angina and/or microvascular angina as a subset of an odd neurological condition that also affects blood pressure and pulse, my gut, and marginally temperature regulation as well as - apparently - my sensory system. But can the disabling symptoms be managed better?
  2. I am so glad to read of others with these problems. I have occasional clusters of heart attack-like events and, amongst other things, left side pain (chest, shoulder, arm, abdomen, even going into pelvis). 10 years ago I had an angiogram, more recently a myocardial perfusion scan and echocardiogram but no structural problems found. Initially with these attacks, my EKGs/ECGs have an ST abnormality (indicating ischemia but this isn't definitive). I suffer more widely from sensory symptoms such as tingling and pains, also GIT problems, central chest pain, and brain fog. I have had numerous scans and investigations, all with negative results, and my most recent consultant said that dysautonomia or acute porphyria remained as possible clauses and I am awaiting a consultation with a neurologist. It seems that the heart attack-like events could be caused by Prinzmetal's angina (also called variant angina), where cardiac arteries go into spasm.
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