being diagnosed

being diagnosed

Postby member_41550 » Mon Nov 24, 2014 2:09 pm

hi everyone I'm new to this forum. im 22 years and just being diagnosed at the moment I've been on cabergoline for 2 years now.
I've had my first MRI scan as ive had to wait for my braces to be removed (as they interfered with the scan)
now that I've had my first scan. I've recieved a leter of my endo to say that they suspected a prolactinoma. but no abnormalities
was seen but my right lobe of my pituitary gland is more enlarged than the left and receiving less signals that the left lobe. I also
get these blurred vision and I sort of lock up and can't move.I've not told my endo about me locking up cause I'm not sure what he will
say and scared of getting bad news ( had about 3 in a year up to now ). my other symptoms arnt as bad blurry ( ive been checked and my results came back inconclusive) low mood, lack of energy and a bit snappy. just been told to carry on with my cabergoline and they'll review my
mri in the next appointment. .

I was wondering if any one else has had any of my symptoms or know what's going on?

thanks matt
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Joined: Mon Nov 24, 2014 10:55 am

Re: being diagnosed

Postby Pat » Tue Nov 25, 2014 9:24 am

Hi Matt, welcome to our forum.
If you want to talk to Alison, our endocrine nurse, I'm sure she will be a great help and understand your worries about this.
She is next on Thursday morning 9am to 1pm on 0845 450 0377

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Re: being diagnosed

Postby member_41550 » Tue Nov 25, 2014 2:18 pm

Hi pat, I'll speak to the nurse.
thanks for you help

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Joined: Mon Nov 24, 2014 10:55 am

Re: being diagnosed

Postby Carl » Thu Nov 27, 2014 8:45 am

I think any of us who have had a Pituitary related condition would say always mention every symptom, no matter how unrelated it seems or how bizarre. I have Hypopituitarism rather than Prolactinoma, but I had the 'locking up' and odd vision problems (and low mood and lack of energy).

If you've got a symptom that you know you didn't have before, or in your heart of hearts you know isn't quite right, then mention it. It was only when my Endo happened to mention 'do you have any vision problems' that I mentioned the recurring dim vision I had in my left eye (because the tumour was pressing on my optic nerve) that it even occurred to me it could be related. Hope you get something sorted out soon.
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Location: Near Southampton, UK

Re: being diagnosed

Postby member_18396 » Thu Jul 23, 2015 5:46 pm

Hi I'm New to this forum.. My Name is Ron and Read with great interest everyone's experiences.. I Have been suffering for many years with relentless headaches which i had primarily put down to me suffering a myocardial infarction many years ago.. i now strongly suspect that it was caused as a result of an undiagnosed pituitary abnormality i suspect prolactinoma.. only now has all the peices of the Jigsaw beginning to point in that direction.. I Now shy away from being in large groups or going away anywhere.. i get so easily stressed even meeting new people stresses me.. This has been an absolute Nightmare.. as yet and after speaking to alison and she has told me the baseline tests i need i still havent plucked up the courage to go see the doc..but i Cannot take much more of this.. I was wondering if anyone in the forum would be willing to speak to me on the phone as i think this would help me immensely particularly someone who has prolactinoma..i would be most Gratefull for any advice or information anybody out there could give me...can someone please help.. Ron
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