StiLl undiagnosed

StiLl undiagnosed

Postby member_42000 » Mon Sep 07, 2015 7:02 pm

hi my name is sally, I've been in hospital system for two years,it all started with spells of hyperactivity and insomnia years ago it's now a nightmare every day constant weeing vile mood swings anxiety restlessness temperature changes and bad vision.had an mri scan which showed a bright spot on pituitary waiting to see endocrinologist ,very hard when all your body is affected ,any tips on how to cope I would be so pleased as struggling at mo
Thankyou sally .
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Re: StiLl undiagnosed

Postby Carl » Tue Sep 08, 2015 8:51 am

Hi Sally. Sorry to hear you've been struggling. It sounds like a call to the Pituitary Org's Endocrine nurse might be of use. She may be able to give you a list of questions to ask and things to think about. Info copied below from their website....

Endocrine Nurse Helpline 0117 370 1317
(available Monday mornings 10.00am to 1.00pm; Monday evenings from 6.00pm to 9.00pm; Thursday mornings from 9.00am to 1.00pm)

I assume the constant weeing is accompanied by constant drinking, as that sounds like Diabetes Insipidus. I had that only temporarily for a couple of months, and that was long enough. I took a drug, Desmopressin, which did control it....but it is something you'd need to get properly diagnosed first.

Regards, Carl
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Re: StiLl undiagnosed

Postby member_42000 » Tue Sep 08, 2015 9:03 am

Thanx Carl I'm in the process but can't be seen until oct12 I've been passed from pillar to post by my gp who has just kept sending me away,I can't even drink bottled water as the salts in it bring on symptoms ,very frustrating and hard to deal with all this,thank you for your reply
Sally .
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Re: StiLl undiagnosed

Postby Carl » Tue Sep 08, 2015 1:59 pm

It might be worthwhile contacting the hospital and asking for them to put you on a list in case a cancellation comes up to get you in sooner? It might be worthwhile at least trying to see if they can bump you up the queue.
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Re: StiLl undiagnosed

Postby Mgh » Tue Sep 08, 2015 2:55 pm

Excellent advice, Carl. Pituitary Foundation and nurse Alison will give excellent support and advice to help you cope now and also to get the best out of your appointment. They are wonderful! In addition I think it is crucial to see an endocrinologist who is very experienced in treating pituitary patients.
Best wishes
Maria
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Re: StiLl undiagnosed

Postby member_42000 » Wed Sep 09, 2015 3:54 pm

Thank you I've spoken to Alyson who was very helpful.i need to write everything down I feel as get a bit panicked at times .ill be having the water deprivation test in the next few weeks so the results will be available when I see endocrinologist .
Thank you sally x
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