Hi all. Hope everyone is as well as can be. I haven’t posted for a while as I felt bad that when I did they were usually woe is me ones,and I didn’t want to keep doing that!!! I’ve not been in a fab place lately so haven’t felt able to post replies to people that are upbeat etc,but I do read the posts and feel for everyone going through a crappy time. Ok so got an odd one here that I want to put to you as my ms nurse isn’t sure. I’m lactating (not pregnant for definite) and my prolactin levels are raised so gotta have another blood test, anyone had this or know of anyone that has??? Answers on a postcard welcome. Take care Kate x x
I don’t want to alarm you, as it is usually benign, NOT cancerous, but this can be caused by a pituitary tumour. There are probably other causes too, but this is the one I know about, because my sister had one.
She’s recently had surgery to have it removed. In most people, it can be treated successfully with hormones, but she’s been persevering with that for years, and none of them quite worked properly, and all of them had side-effects (for her, not necessarily for everyone), so in the end, she got so fed up she really pushed for surgery.
It’s early days yet, as she only had the op recently, so we don’t know if her prolactin levels have fallen yet - she’s got to have another test. But the surgeon claimed it all went well, and he thinks he got all of it out.
Please do NOT think surgery is the normal outcome; it’s not. Most people probably would have lived with it - it’s not that drastic, compared to MS. But my sister is less patient than average. She was determined to have the op, even though she was cautioned against it. Hopefully, for her, it has worked out alright, but it’s not a normal first choice treatment.
Hi Tina. Thanks for the reply. Was thinking it could be one of those random odd ms things people get. I won’t worry about it too much for now. It’s nice to actually have an answer for why it might be happening. Hope your sisters doing ok Kate x x
Sorry to hear you aren’t doing so well. PM me if you just need to rant. You know I’ll have a good old rant with you.
As for your leakage, I have also had this about 13 years ago albeit very little - I was not pregnant - never had been. My doctor told me at the time just to keep a eye on general health and do breast checks. It did stop after a couple of months (boyfriend at the time loved it). Do make sure it gets checked out fully but don’t worry too much about it - that will just make your MS worse.
I hope some-one has a better answer for you sweetie.
Lots of hugs
My sister’s team do know I’ve been diagnosed with MS. But although her condition is also a “brain thing”, we’ve been assured this is just coincidence, and there’s no link between the two. Actually, although it happens to be in the brain, a prolactinoma, as it’s called, comes primarily under “endocrinology”, not “neurology”, though obviously she needed a neuro surgeon to do the actual op. But her primary consultant was an endocrinologist, not a neuro.
She seems to be recovering fine, thanks for asking, although it’s too early to tell if it’s had the desired effect. Unfortunately, I think they do have a tendency to grow back, so I’m not sure even surgery is a permanent fix. But I think it becomes less of an issue post menopause, and she’s in her 40s already, so if it grew back only slowly, it might not be a problem until nature takes care of it anyway.
I think up to 1 in 5 of us have a pituitary tumour, but they are mostly symptomless, and discovered only incidentally. It’s unlucky to have symptoms, and even more unlucky to have to resort to surgery.
Thanks JBK Will you Hun xxx
Ok so I had an MRI done focusing on the pituitary gland but no tumour has been found so being referred to endocrinology!!! My neurologist is baffled. I just hope they can sort this out fast as
( hit post by accident) Lactating is not fun!!! Had soo many blood tests done but all is nomad apart from the prolactin level. So I’m another awkward one!!! Lol? Hope you are all doing ok! Take care Kate x x
my dad had a benign tumour on his pituitary and he ignored it until he went blind in one eye.
get it checked, honestly the surgery was straight forward but his optic nerve had been damaged.
take care and good luck
Hi Carole. They can’t see a tumour on the pituitary so not sure what’s causing it. Hopefully will get an appointment for endocrinology quickly. Kate x x