Spinal cord lesions- please help - My MSAA Community

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Spinal cord lesions- please help

Sadieschafer profile image

MRI came back- there are now lesions on the spinal cord...does this mean I'll become paralyzed?!?! I'm so scared....does anyone have experience with this?

31 Replies

Hi Sadieschafer

When I got my first set of MRIs (as part of my initial evaluation and Dx), my cervical scan showed substantial lesions in the spinal cord area, and it looked as though my spinal cord were almost entirely compromised.

I completely panicked (understandable, at least to some extent).

Panicking does not help things, however (especially with MS, where anxiety and stress can fuel additional progression).

Nor does the fact that you have lesions in the cord area mean that you'll become paralyzed . . .

I would suggest that you take a deep breath, then go meet with your neuro, and ask him or her to explain precisely what these images suggest, how the trajectory of your case seems to be heading, etc.,

--Christopher

Thank you for your thoughts. Can I ask what your symptoms have been and how severe? I hope things are going well for you? Are you aware if there is any way ghstbthe spinal cord can regenerate the damaged areas?

I have PPMS, and am at least 10 years into my progression, so your case is likely a good bit dissimilar from my own.

Also, anecdotal evidence is just that (particularly with MS, where each case has its own unique presentation).

As for regenerative science developments, you might be interested in a post from about a week ago, entitled "Neuroplasticity."

There are also tons of other posts in this forum about various disease management therapies, and the experiences that folks have had with each.

Relax, regroup, and take some time check them all out.

I absolutely promise you two things, Sadieschafer: (i) we have each struggled with similar moments of panic and/or angst; and (ii) your situation is WAY less dire than you currently feel, dread, or anticipate that it might be.

Multiple Sclerosis is unquestionable a freaky disease, and one of the very worst aspects of the disease is the emotional roller coaster to which it subjects us all.

That same exposure to emotional turbulence and/or states of relative panic is, by the way, itself a key part of the disease's presentation (you may or may not already know this).

In short, it's a frightening disease, and as part of it, we have an enhanced tendency to become frightened or overanxious. See generally mymsaa.org/ms-information/s...

As the ER doctor said to the parents of the young boy who had just swallowed a dime, "This too shall pass. . . ." 😳

-- Christopher

Fancy1959 profile image
Fancy1959CommunityAmbassador in reply to GasLight

Gas Light and Sadieschafer, there isn't much to add to this incredible post that Gaslight sent you Sadie. The message was clear and it provided a lot of information in a clear and precise format. Well done Gaslight. It is good to hear from you again. The best advice that you have gotten over and over Sadie is to take a deep breath and realize you are okay. Read everything you can about spinal lesions, talk to your neurologist, and talk to us so we can share our stories of conquering spinal lesions and getting on with our lives with you! Fancy1959.

Thank you so much for taking the time to talk to me...

Thank you

C2, T1, T2, T7 and still walking. My legs are sometimes weak, stiff, and have spasms though. I don't walk as fast as I use to. Who cares. I'm walking!

GasLight profile image
GasLight in reply to Juleigh21

Darn, Juleigh21-- you're working on a full house, aren't you?!?!? 😜

Juleigh21 profile image
Juleigh21 in reply to Juleigh21

I'm ready to fold😳😂

Hello Sadieschafer like the other posts suggest, take a deep breath and try to calm yourself (I know it's easier said than done). MS affects everyone differently. Me personally I have brain and spinal lesions. My primary issues is my gait (because of the spinal lesions). What my doc told me was the the brain lesions mainly cause issues in the body from the neck up (vision etc) while the spinal lesions causes it from the neck down (extremities, bladder etc). Now I'm not a doctor I'm just telling you what I was told how MS lesions affects the body (in very simple terms so that I could understand). I still walk and drive everyday (I can not run a marathon but I get around😊). Like GasLight suggested, go meet with your neurologist and have them explain what your MRI really mean for you. Good luck.

Sadieschafer i have cervical spine lesions and am not paralyzed. My balance issues originate from my cerebellar lesions (I think)

U say spinal lesions. Cervical? Thoracic? Or lumbar (very unusual for MS)?

I have legions on my spine and I'm just fine. I'm walking around. Right now I'm out of remission mainly because I refused to accept I was having an episode my first mind you.

Most of my activity has been in my spinal cord. Aside from optic neuritis and going blind for a short time, my worst hit has been in my spinal cord. As a matter of fact, my last four hits of been in my spinal cord. I think everyone is different. I am still fully active. I'm not at as athletic as I used to be but I'm still full functioning. I think it's just different symptoms. Don't worry. Worrying makes it worse.

Hi Sadie, my last 3 attacks have affected the same places ( core, legs, balance ) and I'm still walking, also still having a dance to my favourite band : ) I am suspected of spinal lesion/s still awaiting scan results.

I am making great progress since Christmas relapse - power is coming back nicely : )

Where are you up to with your weakness/leg function/balance ? Have you tried a stick/s temporarily to help through this rough time ? Angela x

Dear Sadie, nobody can tell you what effect lesions on any part of the CNS will or will not do to the body. Just be aware of them, stay strong and ADAPT. Bet u stay walking for years to come, remember DO NOT PANIC even though sometimes it is hard not to, enjoy what you have and keep having it. Take your A B C's and the rest and find a place to be calm and centered, remember Fear is the enemy not ms, do Not let FEAR beat you. Royce

Sadieschafer MS news is frightening and often not clearly explained to a patient. As so many have said, take a deep breath and feel the love and support from this community. There's a lot of wisdom and experience here; much of it may be just what you need. I have lesions on my brain and spinal cord (cervical and thoraxic), will pass 77 soon, and, though wobbly, am still walking (2 miles a day weather permitting). MS damage affects everyone differently and a new lesion is merely a new lesion but not a prediction of complete disability. I am holding you in the light.

Sadieschafer profile image
Sadieschafer in reply to goatgal

Thank you so much for positive thoughts and support :)

I've had several spinal lesions. It will be ok. Breathe!

I'm still walking and working.

Might make things more challenging but you will be ok.

I am so much for everything, and the positive thoughts...I'm eases my mind a bit.

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I don't think the lesions will paralyse you.

I have one lesion on thoracic spine and am relatively new to MS. Just DX'd last month, but went numb last summer. I just saw one of the neuros yesterday as mine was not available. Both neuros believe most of my symptoms in legs and bowels are caused by that lesion. I am very familiar about the spine, etc. I have had spinal problems for many years caused by Osteoarthritis. Have had 2 spine surgeries and lower spine is fused. Neuros are concerned with a slightly herniated disk near the lesion. They feel it may also be causing some problems, but I don't think so as it never hurts, or causes electric spasms. My next question for them will be if I should have my ortho doc do something about the slightly herniated disk. He's aware of it, and also does not think it's any worse than when he first discovered it 5 years ago.

Thank you so much for sharing

I have some spinal lesions also. Have been on betaseron injections every other day. Suppose to keep the ms from progressing, but does not cure the ms. Last mri showed no changes.

Most of my lesions are spinal. So it doesn't mean paralysis. I only a few very small brain lesions. Take a deep breath. I was scared too, then I thought of all thw cute shoes I could buy and not mess up and how I was going to decorate my chair 😉 We just have to take each new step as a new opportunity to be better than MS

Fancy1959 profile image
Fancy1959CommunityAmbassador

SADIESCHAFER, it's Fancy1959.new lesions, no matter where they are are always scary. Take a deep breath and realize that many people with MS, including myself, have spinal lesions and we are walking right next to you and would be happy to grab you by the hand and make sure you can walk step in step next to us. I am sorry it took me so long to get back to you. There were insurance issues on my end with the new year that threw me off track to say the least. Make sure your neurologist goes over your MRI every time you have one. Ask him what is new in what is old. Stay on top of your health and what lesions you have. Fancy1959.

Thank you so much for your time and thoughts...it is so appreciated. This community makes me feel like I am part of something bigger than myself, even when I'm feeling completely alone.

Hi! I also have lesions on my spinal cord. It’s very scary. I have them in my neck and brain.

My doctor said I could almost be diagnosed as a spinal cord injury patient.

Ugh! That really helps bring on the depression.

I’m was taken off tecfidera last Thursday and don’t go for my first Octavus? Infusion till the 28 of March. So now I’m on no ms med.

Good luck to everyone!

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Momjules

You will do Great Momjules 🤗 next time just look at your Dr and say cool! And you could almost pass as a Neuro! 😁😂🤣

J🌠

No I haven't been told about lesions on my spinal!! Hopefully, you will not be paralyzed. Just put it in God's hand and I know he will see away when we don't..

Thank you so much!

I believe in god and I believe his angels are watching over us!

Cool right!!

My initial diagnosis scan I had spinal cord lesions, my last relapse 3 years later I have new lesions on a new spot in my spine. I’m still moving. You would already know if the lesions were impairing you. Non medics explanation lesions show where MS has hit attacked some myelin. Permanent disability would be much more damage to myelin. Like I said I’m not a dr this is based on what I have read. I’m sure others in this site can assure you with a better answer. Super scary I was very upset of new lesions. I see dr in a week or so been having incidents of drop foot not sure if that is new lesions. But I’m still moving and will continue to move until I can’t. Keep the faith, stay strong you are a warrior

i have thoracic lesions. i, too, have weakened legs and sometimes they decide to take a break... down i go, but i get up again😀. as others have said, every case is different. and since you're diagnosed (i'm stuck in limboland) you'll have access to disease modifying medications which i feel is super important.

it's all very frightening and it's ok to get scared, just keep going, get informed and talk to your doctor.

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