Lesions: I was diagnosed Feb 2010. At that... - My MSAA Community

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Lesions

Peacey profile image
11 Replies

I was diagnosed Feb 2010. At that time I had 11 lesions on my brain, none on my spine. I was told that I had SPMS by my neurologist. I now have over 50 lesions on my brain that cause extreme cognitive issues and 3 on my spine.

I would like to know how MS is considered "Stable" when each time an MRI is performed more lesions appear. They are no active at the time of the MRI, just more in quantity.

Does anyone know the answer to this?

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Peacey profile image
Peacey
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11 Replies
Morllyn profile image
Morllyn

I would like to know the answer to that also Peacey !

greaterexp profile image
greaterexp

I don't have an answer, but will be watching for responses. By the way, you are very articulate and eloquent in spite of the lesions.

Peacey profile image
Peacey in reply togreaterexp

Thank you

jimeka profile image
jimeka

Thought for the day, and no I am not crazy, well not all of the time.

Anyone thought what those magnets do to us? I know that there is no proven side effects, apart from nearly having a bladder accident because they won't let you up and go to the toilet after been in there for one hour and 45 minutes. It sounds like a jack hammer pounding away, but could the magnets suck out the lesions that are lying there dormant. I just find it amazing that there are more every time that you have one. How many lesions can ones brain develop? So no wonder we all have cognitive issues. 🦋 🌈 Tip for anyone having to endure a long MRI. If I have shared before please forgive me. Close your eyes before you go in to the machine and don't open until they have finished, I pray for everyone I know alphabetically. Time goes really quick.

Raingrrl profile image
Raingrrl in reply tojimeka

Hi jimeka ! I haven't had any new lesions in years and I have MRI's every 6 months because I'm on Tysabri. My neuro says my MS is stable. I mostly have the same old symptoms. Some symptoms are my constant companions and some come and go depending on a myriad of factors.

Peacey profile image
Peacey in reply tojimeka

I close my eyes before going into the MRI, I have never opened my eyes while in it.

agate profile image
agate

@Peacey, many people have so many MS lesions that they aren't even counted. The MRI report might say "at least 12 lesions" or whatever. Apparently it isn't the number of lesions so much as their location and, most of all, whether or not they're active that indicates whether the MS is acting up. They assume that MS is almost always going to be producing more lesions as time goes by, I think. They're also paying attention to the amount of brain shrinkage, which they can see on an MRI.

erash profile image
erash

Peacey so sorry for the disease progression and sending you well wishes 📬

Are u on DMTs?

Fancy1959 profile image
Fancy1959

Peacey, hello and welcome to this wonderful chat room from Fancy1959. Are you currently on a therapy for MS? MS therapies are designed to slow the progression of lesions and disability. Do not be afraid to seek a second opinion from a different neurologist. Many of us have suffered through working with neurologist who are simply not very aggressive or progrssive in the treatments they use. Do not set back passively and accept everything your neurologist tells you. YOU, are the best advocate for your own health care. If you have doubts or are unhappy with your current neurologist, find a new one! A great resource to use to find the top neurologist in the area you live in is to call the National MS Assoc. of America at 1-800-FIIGHTMS. They can suggest to you neurologist who are leading researchers and agressive in their treatments of MS. Please keep in touch and let us know your quest in slowing down the progression of your MS goes. Until we speake again remember that together we are stronger! Take care.

Peacey profile image
Peacey in reply toFancy1959

Thank you. I will call them

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Peacey Let me Also send out a welcome to our MSAA Community ☺. I hope you find that we have a warm compassionate group of people here!

Your question is a really good one! We are having our own "Ask Me Anything' on March 29th at 6pm E. T. With Dr. Berry Singer.

We hope to see you here. Then and now! Please feel free to join in at anytime!☺

Jes🌠

~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

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