MRI: What was everyone's reaction to... - My MSAA Community

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Lay24 profile image
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What was everyone's reaction to seeing lesions on there brain for the first time?

Me scared 😨, shocked how many 😲,worried 😟, then I saw a one that was biiger than the rest😬 but all in all I was proud of my self for saying I wanted to see them and not crying accepting this is me i have MS ☺

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Lay24 profile image
Lay24
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10 Replies
Morllyn profile image
Morllyn

I am a bit odd. Looking at my first MRI was exciting, I love seeing and learning about new things. Of course I only had one lesion. I had my first MRI when they first came out and they did it for free because they were learning how to use it. The technician that did mine had MS herself. She told me that her first one showed 12 lesions. She wasn't suppose to show me mine but she did and we got into a long discussion about them.

I have only had 1 lesion show up in all these years (1977 to 2016) then in September 2016 I had an attack and had "at least, the report said" 2 more lesions. A bit scary.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I found it very interesting as I knew something was going on in there. Depending on which MRI I looked at I have either 34 or 20 white spots the could or might not be MS. I have 1 lesion on my spine. Doc says brain spots could be a MS, or caused by some other factor like hardening of the arteries. The third set of MRIs which I will have an April will show if there is any change in size or development of the spots. So I'll be looking forward to seeing those MRIs also. I trust my second Neuro as he is the Director of the MS Clinic @ UCSF.

Raingrrl profile image
Raingrrl

Hi Lay24 !

I was very anxious when I went to hear the first MRI results. I knew MS was a possibility but my wild imagination had me believing I had something like an inoperable brain tumor. I was a single Mom and was freaked out about an outcome that would prevent me from raising my kid.

I was relieved that it was MS even though the brain MRI displayed so many lesions, I couldn't count them! I knew there were treatments and believed that properly treated I could continue in my career and in being the Mom I love to be. And during the 17+ years since my diagnosis, I've been able to work full time in my tech career and raise my child. I'm an empty nester now and only recently had to leave my job because I've had some progression that gets in the way of working.

MS is such an odd disease. I'm an example of someone with many brain lesions, brain stem lesions and a cervical spine lesion that for 17 years has maintained a stressful, mentally taxing career while being a single parent. Everyone's MS journey is different but you can still have success and a good life! You can choose to see MS as a roadblock or as just an obstacle in the road that you need to find a way around.

erash profile image
erash

Interesting post Lay24

At the time of my first abnormal MRI I only had one symptom, trigeminal neuralgia, yet my brain looked like Swiss cheese and I was amazed at how well I was functioning with all of those lesions and brain atrophy.

I was and am thankful for neuroplasticity and a good cognitive reserve that keeps me marching on...

dmaskal1 profile image
dmaskal1

Since my wife had always been teasing me that I didn’t have a brain I found it to be a wonderful opportunity to show her I really did have a brain. Of course she asked where I had stolen the picture from and whose brain was really in the picture. :)

greaterexp profile image
greaterexp

I was relieved to see that I truly had a brain (I'd only suspected up till then.) and could now prove it, but was taken aback with hearing "multiple lesions" and no attempt at naming a number. 3? 29? I marvel at how well I'm doing, considering the high number of lesions.

bavery207 profile image
bavery207

@Lay 24 When I saw my 1st MRI it was with a mixed reaction of fascination and numbness. My neuro wasn't sure if it was lymphoma, sarcoidosis, or MS,although he did not think it was MS at the time. I had the MRI because another neurological problem have had gotten worse quite swiftly and he was trying to figure out why.

ddeadred profile image
ddeadred

Brain tumor, AIDS, or MS... Ended up with the easiest one, but 30 years later, it has become a bit more challenging... Thus is life, but I'm still standing with a little help... My brother died of Duchenne's muscular dystrophy in 1989 at nearly 22 so if I had to have a "m" disease, MS seems less horrible... That said, the MonSter gives me challenges every day to which I say, "Forget it!!! I am WOMYN, hear me ROAR!!!" xo Cj

BigMar7 profile image
BigMar7

I was finally diagnosed at the age of 56 with MS. I remember seeing lots of spots on my MRI. I went through more tests including a spinal tap which confirmed it was MS. But my neurologist didn't seem to concerned, put me on daily Copaxone, and 12 years later I am walking, with a cane. I had done lots of reading about the disease and was ready to fight. I still try to keep up with research going on for the disease. It helps my brain to be active.

Taylorsmom profile image
Taylorsmom

I was scared to see and hear about lesions especially their locations. I have so many on my brain but they aren't active I was told. I have one active lesion on my brain as well as my spine and it's sort of freaking me out but I'm trying to stay positive and stay prayerful. I have my days/moments.

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