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Undiagnosed fed up

PostPosted: Tue Sep 22, 2015 8:31 am
by member_42000
hi ,
I'm a54 year old woman having insomnia for years not being able to sleep at all and not tired.then as years have passed mood swings eye probs constant weeing still not sleeping memory problems and now skin like paper on my arms .iwas relatively fit but can't train now as it makes me worse if I didn't know myself well I'd think I was going nuts.waitng to see endo now as an mri brain show ed a hotspot on my pituitary any comments help etc great fully needed finding it hard to cope ,
Thank you sally .

Re: Undiagnosed fed up

PostPosted: Tue Sep 22, 2015 4:15 pm
by Carl
Hi again Sally, yes the waiting is a darned nuisance isn't it. You just want to get in and see the Endo and start to feel better, do you have an appointment yet....I think you were also waiting for a water deprivation test too?

One thing my GP did for me was make sure I had all the blood tests he thought I needed prior to seeing my Endo for the first time, to make sure that there were as few delays as possible for diagnosis. It sounds like if you have something flagged on your MRI then you must be part way to knowing more. In the area I live there is a local pituitary support group (Solent) who meet a few times a year, might be worth getting along to your local one if they happen to be meeting - as it happens the Solent one is meeting this coming Saturday if you are in this area....unlikely probably :)

Are you on any treatments yet, Hydrocortisone or anything? I had the constant weeing for a time but luckily it went away on its own a few months I had my tumour removed, I didn't get much sleep for weeks, so I know how you feel

Re: Undiagnosed fed up

PostPosted: Thu Sep 24, 2015 10:40 am
by member_42000
Hi , no I'm not on any medication yet .i have high sodium prob because of it.i also had saliva cortisol test done privately my before sleep was very high but it wasn't acted on,my water deprivation test is weds ,thanx for your reply as I feel very alone and sometimes it feels as if I'm going insane (mood swings etc)
Thanx again sally .
Ps I'm from notts Derbyshire borders .

Re: Undiagnosed fed up

PostPosted: Thu Sep 24, 2015 8:50 pm
by Mgh
Sally, just found this link on website :
The Derby & Nottingham support group is quite informal and sometimes meet occasionally to support pituitary patients and carers. However patients mostly just contact the co-ordinator for support over the phone. New members are welcome to contact Dee who co-ordinates the group to find out more.

Contact Dee on 01332 233 142.

Hope this is helpful.

Re: Undiagnosed fed up

PostPosted: Fri Sep 25, 2015 11:39 am
by member_42000
Hi ,thankyou for that number I'm grateful for any help I can get .I have the water deprivation test on Wednesday so maybe that will shed some light on things ,thankyou again
Sally.