I have so many different and complex medic... - Epilepsy Action

Epilepsy Action
1,986 members645 posts

I have so many different and complex medical problems, as one of my specialists calls me "you are a one off!"


My entire life BAD HEALTH! I am ALWAYS on the verge of normality, rare medical conditions abound in my thing called a body. They would honestly fill a medical dictionary, easily. 62 years of life absolutely nothing to report about. I embarrass people talking about my dictionary of bad health. My epilepsy 'specialist' listens to MY experience about one of my conditions JME, [Juvenile myoclonic epilepsy, since 14 and over 400 seizures], I advise her what I should use for my epilepsy! Schwannamatosis I'm the only one in Ireland with it, in my many visits to a hospital, a medical student hears that I am the one with it, and 'grills' me, but I do not think that will be any help to anyone? Meningitis when I was quarantined for six months when 10 years old. I had a back operation over 20 years ago, I will be "in a wheel chair within five years!" I was raped by a female when I was 24, who gave me a "dose" [genital herpes] so no trouble in passing on my woes to another generation! I could go on but as many regulars on HealthUnlocked, are already aware of more of them, I have two a4 pages of them, should I write them down for "suggested tags"? [stroke, oesteoarthritis, shingles, pancreatitis, claustrophobia, prolapsed discs, etc, etc, ......]. Healthunlocked gives me some relief in passing my many experiences over many years, to give some relief to many people in a similar state of woe? Ironic thing is that I have nearly finished a book after 10 years on two Irish serial murderers who killed 16 people and sold their victims bodies for medical research [my epitaph?] Is that the sort of thing you want to know via this survey?

3 Replies

I feel your pain, I have been diagnosed in 1983 of epilepsy then later asthma,later with some serious allergies latex, preservatives to cosmetics... later ahead 20 more years my gp accused me of being a hypochondriac I just about blew a gasket. The epilepsy support group I was in closed funding stoped I was pissed.

I understand. I'm so sorry to hear of you trauma I know what it feels like pm me if you like. My heart goes out to you in my experiences the med students in Montreal are sometimes pretty good. I'm a firm believer in higher education.

in reply to Hidden

Jessica Yes I always found Higher education was a good way of letting off steam! I am a qualified Chef, top of the class, but I knew I could never be one, I knew that in later life I would have to look after myself, also prove to myself that despite my health I have intelligence! My IQ is about 142, I took a part-time degree course in Humanities in History, which took me because of bad health 13 years to achieve, unfortunately my parents never saw me doing it! I am what you would call a History nerd! My epilepsy support group, usually ends up with me being a 'Councillor' to them, and like yourself, stops and go's?

My new Epilepsy specialist, has now learnt, probably from word via my ex specialist, [recently part time, but have known since he was a student, the same age as myself, a good mate] that she will learn more from me, [49 years of experience] rather than tell me what to give me, I'm running out of alternative medications now, but we both agree I am in a particularly good epilepsy medication phase now!

Ironic now, I am now passing old friends and relatives, old age is catching up with them, they are groaning with medical conditions that I seem to have 'moved' through many decades ago? My computer brain is upgrading but my body needs a lot of t.l.c.? ps book is being proof read as I write this? all the very best Shaun

in reply to Adlon57

Hi Shaun, I love watching history tv the things on a Jesus are theoretically very interesting as I am only 44 the ones on Hitler during WWII are very interesting too I find myself always trying to figure out his mental state as I watch those.

Don't worry I'm no neo Nazi far from it I live in Montreal which is very multi cultural I see that as an asset. Though I do find the history very interesting. Nice to find I fellow nerd.

I love to read too I read Jane eyre just recently and was rather shocked when I came across the N word.

My favorite was the handmaid's tale which i did while watching the tv series. I'm also a paranormal buff I get premonitions I just know I always say for 2 days I knew something was going to happen to one of my parents next thing I know my dad had his stroke still a gut punch I've been like this since I was small I always knew I had a brother but he passed away 4 year before I was born my mom confirmed it for my when I was 10 after I was out of my coma and home when I originally got sick i had encephalitis.

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