Craniopharyngioma

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Re: Craniopharyngioma

Postby member_37299 » Tue Jul 02, 2013 5:51 am

Hi John
Glad you had a good weekend.
Yeh I was on the same once every 3 weeks and it become a pain
In the end going doctors every 3 weeks.
The endocrine wanted to switch me over to one every 3 months because
They reckon having it every 3 months over every 3 weeks will improve
My mood although I can't say I've seen the benefits.
Have you been to any of the support groups or conferences?
I've only been to one a few years back in London.
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Re: Craniopharyngioma

Postby member_6464 » Thu Jul 11, 2013 6:54 pm

Hi Scott,

Just wondering if you're OK?

Bit on a knife-edge here with my wife's father
being in hospital again and seemingly going
downhill rather quickly.

John
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Re: Craniopharyngioma

Postby member_6464 » Mon Jul 15, 2013 6:26 pm

Hi Scott,

The main benefit of Nebido is that it gives us a longer lasting "high".

The only Foundation event that I attended was a regional conference
In Belfast 4/5 years ago. Found that experience was brilliant and even
learned something from it.

Sadly, our local support group is not meeting and is looking for
convener at the moment.

At the beginning of my journey, I knew nothing of what had
happened to me in the hospital, due to stroke and coma.
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Re: Craniopharyngioma

Postby member_37299 » Sun Jul 21, 2013 2:51 pm

Hi John
Sorry to hear about your wife's father. Hope everything
Turns out ok.
I haven't been great up till two weeks ago I wasn't bad but then my
Mental health drastically deteriated but I'm slowly improving.
Yeah I've only ever been too one meeting myself i learnt a few things.
Sounds like you have really been through it.
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Re: Craniopharyngioma

Postby member_6464 » Mon Jul 22, 2013 6:21 pm

Hi Scott,

Sadly my father-in-law looks to be at death's door.
He's in and out of hospital for the last three months and failed badly recently.

Only problem bothering myself at the moment is a sore back.
With the doc. this evening, taking advice from the chiropractor last week.
Thought there might have been an infection in the kidneys but
thankfully not.

Any plans for the week ahead?

John
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Re: Craniopharyngioma

Postby member_37299 » Tue Jul 23, 2013 3:32 pm

Hi John
Sorry to hear about your father In law.
I won't be up to much because I'm in the process of coming
Of my antidepressant so I will be ill for a while.
I'll be glad once I'm of them though, the fatigue is bad though.
But the result of getting of the pills will be worth it.
Have you got any plans?
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Posts: 9
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Re: Craniopharyngioma

Postby member_6464 » Tue Jul 23, 2013 7:32 pm

Hi Scott,

Sorry to hear your going to be ill for while. posting.php?mode=reply&f=6&t=361&sid=7c10ecef34432f9ce8a2f446ebb750cb#
Hopefully the fatigue will ease shortly and you'll feel much better.
Keep me posted on your progress.

Father-in-law a lot better today than in the past couple of weeks.
At the moment I don't have much in concrete for the future. Rather boring is life, at the moment.

John
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Re: Craniopharyngioma

Postby member_37299 » Wed Jul 24, 2013 9:28 am

Hi John
Good news about your father in law improving.

Yeah I'll let you know how I get on.
And same here I'm just existing at the moment until I get all
The mental issues dealt with but first step for me is getting of the
Antidepressants, I've been on them 5 years and they've never done
A good thing. I believe it may be because of the craniopharyngioma
Condition that they've never helped but the endocrinologist
I see the other day don't think my mental health problems
Have anything to do with the craniopharyngioma yet the endocrinologist
I see last year said a completly different thing to the one
This time. I'll just take one problem at a time.
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Re: Craniopharyngioma

Postby member_6464 » Thu Jul 25, 2013 8:43 pm

Hi Scott,

Sounds like a good philosophy to have.
No point lying down to the problem as it will eventually push you down too far.

Must contact neurosurgery team in Belfast shortly as my appointment has
Been forgot again. Endocrine keep a good eye on myself but the hospital is
reviewing their appointment system at the moment so my endo. appointment
is to be changed. Don't know about you but I like things arranged and left
as planned.

Have they suggested any way forward regarding the fatigue or they
going to leave you in limbo?
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Re: Craniopharyngioma

Postby member_6464 » Tue Aug 06, 2013 6:05 pm

Hi Scott,

Just wondering how's things now your off the antidepressants?
Everything seems okay here.

John
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