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Primary /Secondary Progressive MS For those living with Progressive MS to discuss treatment options and lifestyle issues.

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  #1  
Old 09-17-2010, 07:57 PM
IowaGirl's Avatar
IowaGirl IowaGirl is offline
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MRI no change-good thing?

OK, I'm confused!

I was diagnosed with PPMS nine months ago. With my initial MRI, I had multiple brain lesions, but since my symptoms are always there and no flares, I was given the PPMS diagnosis.

I switched over to a MS specialist and he requested another brain MRI to compare to the first MRI. I thought he told me if this 2nd MRI came back with no change, he would officially classify me as PPMS, because with PPMS your MRI's never change they stay the same.

I guess my question is this:

1. Do people with PPMS never have a change with their MRI

or

2. Does your MRI's change when your PPMS starts to progress more. (Since my haven't changed, I am just staying stable at this point)

Hope I am describing this the right way, I was just curious if anyone with Primary Progressive can explain this to me.

If this doesn't make sense, I blaming it on cogfog!
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  #2  
Old 09-17-2010, 11:48 PM
KoKo KoKo is offline
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Hello Iowa Girl

Quote:
1. Do people with PPMS never have a change with their MRI
Regarding question #1, I wouldn't go as far as saying that an MRI of a person with PPMS never changes. My brain MRI has changed since the very first one, but the lesions are not the bright, inflammatory lesions that are most usually seen in RRMS brain MRI's with contrast dye.

Typically, there are fewer visible lesions with PPMS. That does not mean, however, that cell degeneration is not happening just because there are not many lesions.

Quote:
2. Does your MRI's change when your PPMS starts to progress more. (Since my haven't changed, I am just staying stable at this point)
PPMS can be progressing, even if there are no new visible lesions on the MRI. There can be cell degeneration even with no new visible lesions. Often times though, an MRI will show that the brain has had some atrophy.

Here is a link of some frequently asked questions about PPMS from the National MS Society. There are more PPMS topics if you look on the right side when you get there.

Hope this helps. If you have more questions, I'll try to help if I can. I've had PPMS for 11 years.

Take care,
KoKo

http://www.nationalmssociety.org/abo...aqs/index.aspx
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  #3  
Old 09-18-2010, 12:04 AM
KoKo KoKo is offline
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Iowa Girl ~

I forgot to ask you - do you have lesions on your spinal cord?

My very first MRI showed spinal cord lesions, while my brain MRI showed no lesions.

A year later, my brain showed lesions. They were the small, black hole type lesions.

Just to let you know, I think that PPMS (like all MS) can vary with each individual too. Strange disease, isn't it

Take care,
KoKo
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  #4  
Old 09-18-2010, 08:56 AM
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IowaGirl IowaGirl is offline
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KoKo, thank you, thank you! That's why I love this sight!

That's what's so confusing about this wonderful new challenge to my life, just when I think I know what's going on with my body, the idea gets shot to crap and I'm confused again! Maybe that's where the cogfog comes in...that's the story I will go with I guess!

You explained it very well!! That's exactly what I was needing to know, and that explanation makes sense to me!

I have "multiple" lesions on my brain MRI and no lesions on my spine. My Obands came back with three.

I still work full time at my job, excercise one hour, five times a week, on a treadmill. My neuro wants me to go for physical therapy to learn some other stretching techniques. He wants me to learn to work on other muscles besides what I am doing on a treadmill.

I take Baclofen for spasms, and Gabapentin for muscle pain in my legs. The paperwork was sent in last week to start Amprya, and he said there is also a new drug waiting for FDA approval that should be ready to go start of the new year! Not that you want to know this information, but thought it was a day of share and tell!

I am also looking into a very specific life changing menu plan (not saying the 4 letter word "diet") that will include no red meat, low fat, cutting out saturated fat, etc. I wish there was a forum on recipes and a group to help motivate people on "menu plans." Maybe even a daily check in type thing. I need others to help with my lack of motivation

Thank you also for the website, I have it bookmarked, but guess I never noticed the specific area for PPMS. Going there now...........

You're the best! Have a great weekend!
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