Had another consultant this evening I don’t have Ataxia

[Paper2021]

I will be leaving this group soon. I was diagnosed pre MRI with Ataxia. Tonight my consultant told me I don’t have Ataxia but I do have a Brain Tumour called Meningioma. It’s got so large and pressing on my brain that it’s causing my problems that look very similar to Ataxia. I feel a fraud for being here but I’m so grateful for all your advise I have read so far. Thank you for supporting me. It’s really appreciated. I wish you all the best and will always be thinking of you. 💕

[BlanketTime1]

i want to wish you well on your journey going forward. i don't think you should feel like a fraud, personally. you were operating on other information when you joined the group. 🤗

stay strong.

[Paper2021 in reply to BlanketTime1]

Thank you. 🤗

[coat2003 in reply to BlanketTime1]

indeed STAY STRONG!

[majajefferies]

What is the plan of treatment for you now? I do hope you get it dealt with and are on the road to recovery soon!

[Paper2021 in reply to majajefferies]

I have to have it removed and it should erase all my problems. Surgery is scary enough. My list of what I need to do quickly is just as worrying. I don’t have a date for surgery but hoping it will be this side of Christmas. Thank you for caring. 🤗

[Guido37 in reply to Paper2021]

Wish you all the best. Take care. X

[Paper2021 in reply to Guido37]

Thank you 💕

[ddmagee1]

My goodness! Please don’t think you are a fraud. Sometimes, with brain tumors, there are symptoms of Ataxia!! It takes a MRI scan to determine that, and the neuro radiologists expertise. I have Ataxia, as a result of Arterial tumor type, attached to the brain stem! I have to keep it under control, by taking blood pressure pills, that keep my blood pressure low. So, my situation is inoperable, and I’ve had Ataxia symptoms my entire life.

[Paper2021 in reply to ddmagee1]

Thank you. 🤗

[wobblybee]

🙂 Best wishes going forward..So many Neurological conditions can have ‘overlapping symptoms’..

I was misdiagnosed myself initially

[Paper2021 in reply to wobblybee]

I had Dr Google my diagnosis last year as MS. The Consultant Nurologist had diagnosed me with Ataxia pre MRI but did say last night he thought it would be MS. He was pleased for me I could be fixed. 🤗

[Paper2021]

In case anyone is interested this is my MRI of my brain. The tumour stands out in the photo.

MRI Brain

[Arlo20 in reply to Paper2021]

Thanks for sharing a very private photo x

[Paper2021 in reply to Arlo20]

Your welcome. Hoping it may be of some use to someone one day. I can’t believe I’ve actually got a brain! 🤣

[suzie44na]

Hi Paper2021, That looks a big tumour can’t miss it. I hope everything goes well for you and it is good they can remove it for you.Wishing you all the best,

Suzie

[Paper2021 in reply to suzie44na]

Thank you. Apparently it’s been there a long time but growing rapidly.

[paul456]

Hi paper try not to rush around and sort a million things take it easy instead. Just think when you recover from your opp you’ll be back to your old self playing football and rugby there’ll be no stopping you. Stay on this website it’s always good for support regardless of illness. I for one would like to hear how you get on.You take care my friend x

[Paper2021 in reply to paul456]

Thank you. I’ve never played Football or Rugby but maybe I should. 🤣

[Arlo20]

Hi I wish you well for the future,you most certainly are not a fraud.Take Care

[Paper2021 in reply to Arlo20]

Thank you so much. 🤗

[Hidden]

Hi Paper2021,Yes, please do come back on sometime after surgery when you're feeling well, and let us know how you're doing. We're emotionally invested in each other, and would love to hear of your success story. Ataxia is ataxia, no matter what the cause, even if the symptoms get resolved; you're always welcome here. Thanks for sharing... The very best of luck to you, and take special care.

[Paper2021 in reply to Hidden]

Thank you that’s so kind. 🤗

[Pacitto]

Hi paper2021 firstly no one thinks your a fraud, secondly that's a tough call and hope you have support going forward.I hope your treatment is soon and your recovery the same.

My thoughts are with you and I for one think you should stick around but that is your choice.

Your very brave, stay strong take care and

Ciao ciao 😘 xx

[Paper2021 in reply to Pacitto]

Thank you that’s really appreciated. 🤗

[coat2003]

I am very sorry misdiagnosed.ataxia is a tough condition overall.it is however unclear what's causing it...It is a complex umbrella of disorders.I am hereditary, so a straightforward genetic blood test, just pinpoint my and my neurologist's suspicion...above all NO GOOD TOU HAVE A BRAIN TUMOUR, what is good CORRECTLY DIAGNOSED NOW, as no doctor i know nothing re tumours. all the best I wish you, so treatable.STAY POSITIVE and good humoured, always help.whatever going through NOT AS BAD AS NOT KNOWING correct diagnosis.Now can get a proper treatment. and stay in touch, ALWAYS an encouraging word for you here, regardless ataxia or not...mx

[Paper2021]

Thank you so much. 🤗

[ww-wibblywobbly]

Hi paper2021,

Please don't feel like a fraud, you were acting on the information you had. Also we would really like to hear from you after your op, and before if you want. You're always welcome and although I haven't posted much on here recently I do follow posts.

Good luck with your op and I hope everything works out for you and one day you can feel "normal" again.

Take care and rest up before your op to give you recovery strength.

Love Alison xx

[Paper2021 in reply to ww-wibblywobbly]

Thank you so much it's really appreciated.

[pinjem]

Not a fraud! Best wishes for the future.

[Paper2021 in reply to pinjem]

Thank you. That means a lot.

[EireAtaxic]

Best of luck to you. I had my first brain surgery to remove a tumour in 1996 at the age of 18 and in college. I can absolutely assure you that advances in neurosurgery have come on leaps and bounds since then. All the best.

[Paper2021]

Thank you that is so helpful.