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Need to share alternative prognosis...

I’m not comfortable writing this and haven’t shared this with anyone bar my best friend in case the docs are barking up the wrong tree. However, it’s playing heavily on my mind (obviously!) and I have no one to talk to as I’d rather present something definite to my family etc than take them on another worry road with me.

Docs are currently investigating (in snail time) an alternative diagnosis. I have a hard, immovable lump and definite thickening in my breast. Next week I will have a mammogram and ultrasound. Today I had my blood test. It is quite possible that I have paraneoplastic neurological syndrome. Apparently, this would mean that there is a cancer in my body which my immune system has tried attacking but has gone haywire (as far as I understand it) and has also attacked my central nerval system thus provoking the neuro symptoms I’ve been having.

It’s a very possible alternative diagnosis for me. I’m not sure what to think or what to feel at the moment!

Dxx

Oh Deb,

Isn’t this neuro stuff sh**! Cant think of a more intelligent word.

I too, if I were you, would not know how to feel.

I really dont know anything about the condition you are suspected of having, so struggling to come up with any advice. Hopefully another member of our cyber army can shed some light.

I know I have offered no advice but just wanted to say poor you and hope your journey improves soon.

Life is a rollcoaster and a very scary, uncertain ride for us Neuro patients.

Take care

Clare x

So sorry to hear this Deb, another bomb dropped on you. Just wanted to say thinking of you. Chis

Gosh Deb!

I’m gob smacked. I really hope its not paraneoplastic syndrome for you. I’ve seen a few patients inadvertantly with this so I can understand the confusion and turmoil you’re going through.

Thank you for trusting us and feeling that you could share your news. I hope you know we’re all here for you, whatever the diagnosis you have neuro symptoms and you started your journey here like most of us and have become a big part of this forum.

I’ve got everything crossed that its a false alarm and the lump you have is nothing at all. Let us know how you get on and whatever you need a moan, a shoulder, a virtual hug or just distraction, information we’re here.

You don’t have to be strong with us.

Keeping you in my thoughts and prayers

Reemz

X

I am very sorry that the docs have opened up another worry road for you to navigate - I imagine you feel a bit as if you were grimly making your way down one road when suddenly the doctors threw the car into reverse. You already know from experience that it is a hard job to arrive at certainty in this game, and that somehow we have to pace ourselves emotionally as we go through the process of query this dx, query that dx and wonder what on earth next? I am glad you have been able to confide in a good friend, and you know there are people here who at least can have some fellow-feeling about the strains of waiting and wondering. Just keep breathing deeply and take it one day at a time and try to be gentle with yourself. ‘This too will pass,’ as my mother often says, and she’s right. Alison x

Thinking of you (hugs)

Im going to look it up as i dont know what it is .

keep us updated ,thinking of you ,

Sam xx

Hi, thanks for these lovely messages which have perked up my morning : )

I’m wandering in a daze, making endless cups of tea and poking at my boob!!

Hopefully it will be a total red herring and nothing at all but all these blooming days until we’re sure feel like an eternity - as you all know far too well. I swing from assuming it can’t possibly be true but then thinking yes but there is this hard, immovable lump; my feet, ankles and fingers are hugely swollen with oedema and I don’t fit the MS box etc so what if they’re right and so on.

Luckily I just had a week without the internet so my google doctoring has been avoided this time (I looked a bit but have stopped).

I really really hugely appreciate this forum. Thank you all for being so caring and understanding xxx

Thinking of you xx

Me too Debs (((hugs))) Frank.

I too will have to google this unknown but my heart goes out to you,and no wonder you are walking about in a daze.

Please dont be tempted into endless internet searching as that will drive you deeper into despair.

I know taking your mind off it is impossible but maybe the new house may help.

Thank you for trusting us and rest assured the cyber army will be with you all the way.

Pip

Thinking of you and much love.

google is a friend and an enemy x

Hi Deb I hope that your worst fears are not realised. Thinking of you, give yourself loads of tlc! Teresa xx

Just adding my best wishes to you and hoping for a good outcome.

Been on a very changeable diagnosis road myself…mind knackering innit?

much love, Polly xxx

Hi, me again. Just googled the syndrome and as complicated as it reads to the general public, there was some good news. These cells are like off shoots from a tumour, but they can kill and rid the body of the cancer. So to me that sounds very hopeful.

just hope that`s what happens with you love.

luv Pollx

Hope that it’s all good news for you - can imagine what you’re going through. I’m going through something similar and theres a possibility I may have something called myeloma and having tests done to find out further what’s going on with me. I don’t think that there’s anything that anyone can say to help you but I will impart something that my late mum said to me when she was ill and i carry it with me each day - smile each day because no matter how bad you’ve got it somebody else has it worse and your smile might make a difference to them you might brighten their day. But even with that said I know things must be hard so if you need to rant, vent, rage or anything then we are all here!

Thanks Poll. It does seem as if the outcome is usually good- it’s the immune system trying to kill it I think. Was only a few months ago there was a thread discussing whether people would prefer a long term condition like MS (if it’s mildish anyway) or a limited bad time with cancer or similar…seems ironic now!

I’m not googling - am trying to ignore it - painting the new house and unpacking is keeping me busy plus GCSE results tomorrow so almost as nervous as all the kids will be to see how good or bad a teacher I’ve been!!!

Will be on the AQA results site at 6am looking

I’ll be ok, I always am x

Deb Hope you are ok and that you exam results give you the results you deserve Take it easy :slight_smile: x

Hi Deb good luck for tomorra ! F.xx

Hi Deb

good luck. Definitely don’t google. And you’re right there is chances of a good outcome so hold onto that thought. We’re all hear for you.

Bigs hugs

Reemz

X

[/quote]

Thanks Poll. It does seem as if the outcome is usually good- it’s the immune system trying to kill it I think. Was only a few months ago there was a thread discussing whether people would prefer a long term condition like MS (if it’s mildish anyway) or a limited bad time with cancer or similar…seems ironic now!

I’m not googling - am trying to ignore it - painting the new house and unpacking is keeping me busy plus GCSE results tomorrow so almost as nervous as all the kids will be to see how good or bad a teacher I’ve been!!!

Will be on the AQA results site at 6am looking

I’ll be ok, I always am x

[/quote]

Much love and hope to you x