Treated For The Wrong Condition. Possibly!

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Katherine

Guru
Moderator
Location
Manchester
Hope the tests can provide some useful information! Good luck.
 
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classic33

classic33

Leg End Member
Blimey, I know you're fond of a riddle but fifty years on and still not have the answer is a bit much!

Hope it turns out to be something manageable and let's you get back on a bike.

Good luck.


GC
Epilepsy hasn't stopped me, nor did cancer. So its going to take something to stop me.
Sorry to hear that @classic33 - If you had any trust in Drs\NHS it has probably blown that away. Lets hope you have decent one now.
Went this time last year when brain surgery was suggested, as a cure for the epilepsy I've now been told I may not have.
 
One word for it. It's limited the work I could do, what I should be doing(no cycling), insurance. And if they do say it's not epilepsy, I'd still have to wait a year before thinking about applying for a driving licence. Year seizure free and signed off by a doctor.

Roughly half a million tablets taken since I started school.

It's not so much what is it? more a case of what if?
:ohmy: Ten years or so with the same was enough for me. Id been suffering with severe migraines all through secondary. The day after my final higher examines it climaxed (or so I thought) when I collapsed with a fit and woke up in hospital diagnosed with epilepsy; that ended any career plans I had. I was sent for the mri, etc. but nothing was found (except for a brain, they didn't say it was working though :wacko:). It seemed to settle down in college just the occasional bad migraines for which my epilepsy consultant prescribed stuff. The on first day at uni (Ive no recollections, I'm only going with what the lecturer told me) I walked to the front of the class and collapsed (the first recollection I had was waking up in hospital). Went through a few months of similar, then a GP treating me in one of my blackouts asked my mum what tablets I was on. Straight away he told her to flush them down the toilet. Years later read the migraine tablets in no way should be prescribed to any one on epilepsy tablets, it causes translucent states :stop:The 'specialist' recommended I stay on the Epilepsy drugs, he retired a few month later and all seemed fine again and I finished the year with good marks. But having never had a drink in my life up to then I came down with Pancreatitis (alcoholics disease :ohmy:); lost a stone and a half in few months. What I didn't realise is that the Phenotoin I was taking was way to much for my weight and my first pints I had totally destroyed me. It was a very scary feeling being trapped with a totally sober head in a collapsing body :eek: Scared me off drinking for a long time. Saw the replacement specialist a few times in the year and a bit after. Then he looked at my record reckoned the only true fit I might of had was that one at school and I had none in the year and a bit I'd been seeing him and didn't need to come back.
A couple of years later I moved out of the house and to Dublin and I decided to wane myself off the tablets; after which I've been blootered a few times but other than self inflicted illness (hangovers) I've (touchwood) been very health in the 15 since.

Sorry for the long post but you know how it is, once you start letting things out sometimes you can't stop :shy:
 
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classic33

classic33

Leg End Member
@HLaB, never taken a painkiller outside of hospital. Last one taken was January 1996, back in via the usual route, A&E, and then kept in for three weeks. When I broke the ankle in 2000, and run off the road in 05, I wasn't going to chance taking them.
Long term misuse of phenytoin has led to liver damage, estimate is less than 50% functional and bone thinning. Treatment for both can only start when I stop taking it.
 
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classic33

classic33

Leg End Member
Listened to the experts me. On it since March '77. What might have been, had it not gone down as epilepsy. I could have been driving!
 
I'm glad my 'expert' retired ! I think I was around 22 before they let me legally drive. I'm fortunate though by the sounds of it that it just messed up my teens and very early 20's. I hope things start working out for you!
 
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classic33

classic33

Leg End Member
What's annoying me, is being told that it may not be what I have. All the treatments tried, the things it legally stopped me doing and then other peoples opinions on what it should allow me to do. If it turns out to be wrong, then its 50 years of treatment wasted. Half a million tablets taken.
Something has kept on putting me back into A&E's, once care of the local undertaker when no ambulance was available.
 

Pat "5mph"

A kilogrammicaly challenged woman
Moderator
Location
Glasgow
What's annoying me, is being told that it may not be what I have. All the treatments tried, the things it legally stopped me doing and then other peoples opinions on what it should allow me to do. If it turns out to be wrong, then is 50 years of treatment wasted. Half a million tablets taken.
Something has kept on putting me back into A&E's, once care of the local undertaker when no ambulance was available.
Well, it could be a rare condition, medical research advances all the time.
 

Saluki

World class procrastinator
I am guessing you have a whole bunch of tests and whatnot ahead then, @classic33
I hope you get sorted and a proper diagnosis.

I was treated for over a year for Glandular Fever to no avail. I was then seen by a locum junior doctor who sent me for different tests and I have a thing called CMV instead. The right meds had it cleared up in a fortnight. Nowhere near the same, I know, but I sometimes think that doctors see a set of symptoms and go with the easy diagnosis rather than digging a bit deeper.
Sadly, I used to know a friend who was diagnosed with a benign cyst in her head, which turned out to be a grade 4 neuroblastoma. Tests got muddled up. Took them 6 months to realise the mistake :ohmy: They operated PDQ and removed the tumour, nuked her (as she put it) but she died 2 years later. I believe her husband is suing for the misdiagosis.
 
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