New brain lesion: Nine months since my last MRI... - AMN EASIER

AMN EASIER

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New brain lesion

monkeybus profile image
9 Replies

Nine months since my last MRI and I went for my latest result today. Big lesion on my left frontal cortex. Take a look, folks. Big white area at top right.

Going back in December for another one with the Gandolinium. Find out whether it is active or not.

I'm not too hopeful about this one though. And I'm not a negative kind of man either. F*ck!

This part of the brain is concerned with language. Could be worse. I'm not looking at blindness or epilepsy. Not yet at any rate.

How does this lesion compare with any of yours?

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monkeybus profile image
monkeybus
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9 Replies
StevenSims profile image
StevenSims

Hi Monkey,

1 thing I have found is that MRI machines are getting more advanced? My lesion is in the splenium of the corpus collosum, the centre of the brain, I've been told it's like what the young boys get and has stopped? I'm hoping it has been there since I was a child and it has only recently been shown because the imaging is improved? 1 thing is no gadolinium is showing? Still feels like a timebomb though! I'm hoping yours will be the same?

All the best

Steve

Hillary profile image
Hillary

Sorry to hear that monkeybus, hope it’s like Steve says, fingers crossed

H xx

tieaknot profile image
tieaknot

Thinking of you and praying that it is not a true advancing lesion but rather a more “sensitive” MRI result instead.

Sending a long distance hug.

monkeybus profile image
monkeybus

Was given the all clear today. The Gandolinium didn't pick up anything. Highly unusual place for one of our lesions, he said it was more in keeping with a concussion. Apart from that, he had no input. Still, that's me back to half-yearly MRI's again, just in case.

deengo profile image
deengo in reply tomonkeybus

great news

Hillary profile image
Hillary

Good news for Christmas! So pleased for you. I’m sitting here filling in the dreaded PIP How your disability affects you. Going a bit stir crazy so stopping for a drink. Will rais a glass for you. Merry Christmas xx

monkeybus profile image
monkeybus

Cheers, Hillary .

I was resigned to the absolute worst. I even made a plan to tick off some of the things I wanted to do before I die. Felt like I was on death row.

This disease, it is one diagnosis after another. Still not on hormones, that's one positive thing.

As an aside, I used to go everywhere on my scooter:

nycewheels.com/scooters/

Four years or so, I rode a scooter, I can stand rigid and kick with my leg no problem. Love that scooter but recently, I have been manning up and walking with my crutches. Hard work at first, soles of my feet all spongy, and the spasticity. But after a while y legs started to feel much better.

I have been wearing compression socks as well:

amazon.com/Compression-Stoc...

I'll find the link, but there was a scientific report on how the socks can alleviate spasticity. Works good for me.

The old use it or lose it. Walking more, getting out more. Has to be good.

For the brain lesion, I Googled it, started taking NAC (N-Acetyl Cysteine), Vitamin E, Alpha Lipoic Acid (ALA), and Tumeric.

All proven neuroprotective stuff. I'll post some links here in a bit.

Plenty of studies of mice with brain lesions. Aerobic exercise is another one. That has to be upper body, or on my bike. We must all look after our brains, could be any one of us next. I look on the ALD forums, men aged 30 dying of our disease. Maybe (hopefully) we here can stave the cerebral part of this disease.

Christmas soon.

Take care folks.

deengo profile image
deengo in reply tomonkeybus

I like the NAC, ALA and vitamin E convo. I've been taking it for years now. since the study on it in Spain.

StevenSims profile image
StevenSims

Hi Monkey,

Great to hear that no gadolinium showed up! That's a relief! I agree with your comment use it or lose it! We need to keep as active as we can! I trip quite a bit but I'm still active!

All the best

Take care

Steve

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