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#1 chrisg

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Posted 11 July 2017 - 11:41 PM

Hmm,

 

Was absent for a few days week before last, second opinion for my doc with a hospital stay but had the full grease and oil change anyway - six days until I said "look, I feel like a charlatan, in this four bed ward there's two guys dying of emphysema heading towards lung cancer and one with liver cancer whilst here I am fully dressed sitting on my bed reading and all that is wrong with me is that I'm not steady on my feet, You need this bed for other people, I'll go rest at home."

 

Then they confirmed my doc's diagnosis, Cerebeklar Ataxia - not fatal or anything but messes with your balance - big time, so walking is not at all easy - getting more difficult actually.

 

Apparently there is no known cure, it gets better or it doesn't.

 

You CAN get it from excess alcohol, but that was eliminated through blood tests, I drink far less than I used to. Best guess is head trauma from somewhere in my overly adventurous past.

 

So now I have the after affects of Glandular fever, CFS, hypertension and now this - think I should trade this body in :)

 

Oh well, with mobility aids I can still sort of get around, for now, but not much chance of working much, so have had to apply for a disability pension, not exactly what I was hoping for in 2017...

 

I can still drive, fine once behind the wheel, dunno about flying though, probably not, but the jury is still out on that.

 

Bloody nuisance, but can only wait to see how it pans out and take lots of vitamins, Thiamine especially, either it gets better or it doesn't but my doc suggests many, many months at a minimum - I'll be drawing an old-age pension by then...

 

Great year again - not...

 

Cheers

 

 


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#2 Rybags

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Posted 12 July 2017 - 12:47 AM

Bummer... didn't know it was such a specific condition as to have it's own name.

No F-35 for you then eh?

 

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#3 Nich...

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Posted 12 July 2017 - 08:16 AM

If you can drive ok, surely a wheelchair should see you good for work?


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#4 Jeruselem

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Posted 12 July 2017 - 08:27 AM

No more screaming around the skies at mach 2 then I guess.

Edited by Jeruselem, 12 July 2017 - 08:28 AM.

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#5 GTAV6

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Posted 12 July 2017 - 08:56 AM

Walking is overrated anyway, Chris, trust me :o)

 

At least your cognitive function isn't wobbly...


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#6 chrisg

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Posted 12 July 2017 - 10:03 AM

Being my job tends to involve a lot of network troubleshooting which includes not uncommonly climbing around in roofs a chair is not going to cut it Nich, especially not when combined with CFS and at my age some new sedentary career is unlikely to happen. I'll be trying to find a few hours of achievable work here and there, that's permitted under the rules, but we'll see, disability pension is yet to be approved anyway.

 

Flying is another matter, my flight surgeon knows of pilots with this and other conditions, keeps muttering about Douglas Bader - that was a different era, but certainly not until I've had a full flight medical and probably been stuck in a simulator so the -35 is pretty much certainly off the cards.

 

Strangely I'm not much worried about it, my flying has been a bit episodic for years anyway, it was purest chance that I picked up a few hops this year, and I had resigned myself to their probably being my last anyway.

 

I think they have a name for most everything these days Ry, but this one is quite well known, mind you I wish they would decide how they want to spell it, the spelling I used in the OP was straight from the medical certificate - different to that used in this article which a mate linked me to over-night.

 

http://www.healthlin...axia#diagnosis4

 

I have very, very few of the possible symptoms, basically walking, and because of CFS tire easily. Of the possible causes only two really apply to me, had Epstein Barr induced glandular fever last year and I've certainly banged my head a few times.

 

A CT scan whilst in hospital turned up nothing much, so maybe it is just inflamed, every doctor seems to have a somewhat different opinion - I don't think they see it a lot, just enough to know of it.

 

We'll see, if it can be beaten I'll beat it :)

 

Cheers


Edited by chrisg, 12 July 2017 - 10:04 AM.

"Specialisation is for Insects" RAH

#7 Cybes

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Posted 12 July 2017 - 10:07 AM

Walking is overrated anyway, Chris, trust me :o)
 
At least your cognitive function isn't wobbly...


If it's just walking that is the trouble it won't be much of a problem. But ACA is a little more complicated than that: http://www.healthlin...taxia#overview1

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#8 smadge1

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Posted 12 July 2017 - 10:20 AM


Edited by smadge1, 12 July 2017 - 10:22 AM.

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#9 Master_Scythe

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Posted 12 July 2017 - 10:57 AM

 

Walking is overrated anyway, Chris, trust me :o)
 
At least your cognitive function isn't wobbly...


If it's just walking that is the trouble it won't be much of a problem. But ACA is a little more complicated than that: http://www.healthlin...taxia#overview1

 

 

Is it at all similar to what got you, Cybes?

 

Chrisg,

 

One bit of advice I believe strongly in.

Look into Chinese or Japanese medicine (homeopath type stuff).

 

No, dont use it as your only treatment modern science is amazing and I do NOT discredit them in ANY WAY.

 

However, the 'old civilizations' were curing things we still don't have names for, centuries before we even know what a virus looked like, let alone DNA or anything else.

Use them as a supporting treatment for modern treatments :)

 

Also, turn on the google translate and look into other countires modern medicine too.

Sometimes there are things that are risky and therfore banned in European countries, that work wonders in Russia or China (Clenbuterol for severe chronic bronchial disorders, jumps to mind; my mates suffering from years of Prednisone use due to 'untreatable asthma'.... until Clen.... It's not just the bodybuilders that want the stuff).

 

Just keep your chin up (sounds like you are!) but more importantly have an open mind. Look around. Talk to people.

Good luck man :) Thoughts are with ya.


Edited by Master_Scythe, 12 July 2017 - 10:59 AM.

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#10 chrisg

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Posted 12 July 2017 - 10:58 AM

 

Walking is overrated anyway, Chris, trust me :o)
 
At least your cognitive function isn't wobbly...


If it's just walking that is the trouble it won't be much of a problem. But ACA is a little more complicated than that: http://www.healthlin...taxia#overview1

 

I think the key word there is "acute" Cybes.

 

 In six days in hospital they hit me daily with a battery of the tests mentioned in that article, was fine for everything bar walking. It may progress of course, or it may recede, no way of knowing.

 

If it sticks around I will be getting one of those scooters smadge, couple of mates are keeping their eyes open for one just in case. Dunno about 70MPH without a helmet though :)

 

Cheers

 

Edit: Thanks MS :) I'm  great believer in alternative medicine :)


Edited by chrisg, 12 July 2017 - 11:00 AM.

"Specialisation is for Insects" RAH

#11 TheManFromPOST

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Posted 12 July 2017 - 12:30 PM

you are an old fart, accept it
;)

#12 chrisg

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Posted 12 July 2017 - 12:47 PM

you are an old fart, accept it
;)

:)

 

Actually this condition is more common in kids but I usually do not think of myself as old - have the past few weeks :)

 

Cheers


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#13 Jeruselem

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Posted 12 July 2017 - 02:20 PM

 

you are an old fart, accept it
;)

:)

 

Actually this condition is more common in kids but I usually do not think of myself as old - have the past few weeks :)

 

Cheers

 

 

Immortal not old then?


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#14 Cybes

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Posted 12 July 2017 - 02:50 PM

Is it at all similar to what got you, Cybes?


Gait symptoms are certainly similar, but the cause is different. In my case, it's partly due to the relevant region of the brain being actually absent (excised) as opposed to malfunctioning, partly to nerve demyelination reducing conduction to my legs to ~60% and ~40% l/r, partly for foot drop on the right, and largely due to inner ear havoc thanks to chemo (cisplatin killed my hearing, gave me tinnitus, and destroyed my vestibular system - and all in mere seconds! Didn't do the tumours any favours either, though, so there's that.)

 

Basically, take what Chris has, give him two 'dead leg's and a few shots, then spin him around a few times. ;p


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#15 Master_Scythe

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Posted 12 July 2017 - 02:52 PM

Man, that must have been a hell of a thing.

 

I mean, imagine if it didn't 'fix' the tumors too! what a nightmare of side effects.


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#16 Cybes

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Posted 12 July 2017 - 03:57 PM

I mean, imagine if it didn't 'fix' the tumors too! what a nightmare of side effects.

 

Well, if it hadn't fixed the tumours, I wouldn't had the side-effects.  Not for long, anyway. ;p


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#17 aliali

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Posted 12 July 2017 - 04:06 PM

cisplatin

 

Don't know if I had that one but if I did seems I bloody well lucked out on those shitty side effects.

 

 

Well, if it hadn't fixed the tumours, I wouldn't had the side-effects.  Not for long, anyway. ;p

There is that though. Whilst bad the side effects of the cure where definitely not worse than the disease.


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#18 Cybes

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Posted 12 July 2017 - 04:25 PM

cisplatin

 
Don't know if I had that one but if I did seems I bloody well lucked out on those shitty side effects.


Definitely one of the least friendly chemo regimens in existence - and certainly the worst I was ever put on. By that time, though, they were pretty much throwing whatever they had at it hoping something worked, so side effects didn't really factor into their considerations.

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#19 chrisg

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Posted 12 July 2017 - 05:32 PM

Heh,

 

That's the oddity with this damn thing - there is no real treatment, B2 ie. Thiamine, is about it, and that's not exactly targeting the high probability that I'm being hit by post-glandular fever issues ie. the known correlation between this and Epstein Barr.

 

I think I probably prefer that to what they threw at you though Cybes - I vaguely, very vaguely, know of that stuff, a friend was saved by it but took a while to get back to any sense of normality and, no offense, but he was a lot younger than yourself :)

 

My doc and I will have to have a "chat" next week, not sure he is aware of the Epstein Barr vector but I have a raft of evidence on that now :)

 

Cheers


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#20 Cybes

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Posted 12 July 2017 - 05:35 PM

...but he was a lot younger than yourself :)


I was a lot younger than myself, too! :) 25 then.

"Reality does not care what you think." - Dr Richard Feynman
"Ideas do not deserve respect.- people do." - Peter Boghossian (paraphrase)





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