Prognosis of heavy lesion load?

[teacup]

If one has heavy lesion load and several c-spine lesions, is disability inevitable?
Thanks for your thoughts,
Tea

[teacup]

I have heard that one can go to the grave and only on post mortem did they discover many any lesions on the brain. In other words, some have led a completely normal life without knowing they had MS.

[isamadjul]

Different for us all

I was told by my first Neuro that I have a heavy spinal lesion load. 7 brain lesions. I was dx in Oct. 2010 and haven't ever been able to work a normal day since. I was apporved for disablity after fileing and waiting 5 months. I still don't know if its because my MRI looked that bad or if it was dumb luck. I kinda hope it was a mixture

You'll hear from many on here that have had this much longer then me that still live a pretty "normal" life. MS all depends on the person. Thats what my Neuro's have said to me. Thats also what i've gotten from this website.

My new Neuro who is a MS Neuro said I'm SPMS. I'm 32, soon to be 33. He can't tell me if this means that my slow walking and slow left hand means that in 10yrs it will be worse or the same. That is what is in my opinion one of the worst things about this disease. The unknown factor is what kills me!!! I don't like surprises...so this SUCKS!

Not much of a answer for you except: its all a guess since we are all different!

isamadjul
(allyson)

[Refcam]

Nobody really knows

When I was 26, I was diagnosed in 2005 with RRMS due to an MRI report that said I had a "very large number of lesions" covering my brain. I live a very active life, and only this year have had to stop running due to foot drop. My doctors always told me that many lesions could result in no changes, whereas 1 lesion could result in major changes. Not sure if they were just trying to make me feel better, but so far so good.

Gotta love that no one is really able to give definitive answers, hey?

Anyways, keep living your life to the fullest. That's all anyone can do, MS or not.

[0485c10]

I have heard that one can go to the grave and only on post mortem did they discover many any lesions on the brain. In other words, some have led a completely normal life without knowing they had MS.

(smile) i heard the same thing, that is why i got so upset when i heard of this new "diagnosis" RIS-Radiological Isolated Syndrome where an MRI is done for something other than suspected MS and magically it becomes MS because lesions are on an MRI are shown without symptoms of MS?

that diagnosis is being driven largely by the pharma because MS is a cash cow for them..ms doesn't kill(or VERY rarely) and a person has to take life long expensive medication during their unshortened life span--i half think there must be another secret branch in pharma trying to induce ms because it is so profitable for them...
pharma has a profit motive to get everyone diagnosed sooner.
pharma also develops its drugs based on reducing lesions, why get a person involved it just adds levels of complication--keep it between the MRI & pharma (sarcasm)

the way i heard what you are describing is "alot of people won't even know they had MS during their life on autopsy it might be found that they did have MS"

that was said because the brain is highly plastic and able to route around damaged areas in the brain. a person might be slightly slower at doing things as the brain routes around damaged area's but functioning is maintained...you see this kind of recovery happening in car accident victims that are thought they will never get better but some how, some do..more than anyone thought possible.

but the lesions do eventually result in loss of brain tissue--at a rate of 2x that of a healthy person...healthy people lose brain tissue to but slower. I know people who use drugs or alcohol also lose brain tissue faster than a healthy person---i worked rotating night shift, i beelieve that too accelerates brain loss marganilly too compared to a healthy person.

with the loss of brain tissue, the brain does not have as much are to re route signal too..so that catches up with a person eventually..we all get older.

prognosis/treatment of MS is always relative an "-er", compared to onself not someone eleses MS because all ms is unique. a person can be bett-er

this is an interesting article describing how loss of brain tissue eventually catches up with a person with ms as does getting older.

http://www.mscenter.org/images/stori...er09lowres.pdf

the spine does not have this rerouting ability that the brain has, so lesions in the spine have a greater probability to cause visible symptoms eventually.

lesions in the front of the brain are more likely to cause "invisible" symptoms and lesions in the spine or back part of the brain where the spine connects to the brain are more likely to cause "visible" symptoms.

location is important for that 1 lesion, usually its in the spine(or back part of the brain)

i had a large lesion load on diagnosis--i never was able to resume running--i walked with a walker or a cane for a few years but i'm walking independently now (i'm 48).
for a few years it looked grim, i even bought a manual w/c, just in case. just in case didn't happen & i'm kind os suspecting that it won't, i think i will do every thing a litle slower though.

[0485c10]

i have 4 c-spine lesions,had a few brain stem lesions & cerebellum lesions. being affected is inevitable, being disabled depends on what you call disabled.

[vwradar]

I'm curious how I'm going to be effected long term too. I was dx in May with 19 lesions in total. with about half of them in my spine.

[bellaboostevens]

If one has heavy lesion load and several c-spine lesions, is disability inevitable?
Thanks for your thoughts,
Tea

I belong to a support group that we have many different disabilities to none. There is one person who has hundreds and even a black hole, and if you were to look at her, she is actually a picture of health, and then there is me that has only 3 lesions, i have, speech problems, paralysis, blurry and double vision, and alot more probs. I ask my neuro why since i have so few, he told me that it was a good question. his answer is its not how many a person has, it is actually where they are located. Hope this helps.

[Jules A]

being affected is inevitable, being disabled depends on what you call disabled.

You are right! I was going to say well we all are going to be disabled by this disease eventually but I really like the way you reframed it.

[freeinhou]

I had 3 lesions on my initial MRI in 1989. I had ~35 lesions on my last MRI in 2003. Dx MS 1988.

I'm 53 yo, work full time, live a normal life, so I don't think quantity matters. Location matters...

IMHO, MS is not going to be a disabling thing for me. It's a hindrance, but after 23 years with it - nah. It has become a big *** nuisance...

Tom

[billiejeane]

I belong to a support group that we have many different disabilities to none. There is one person who has hundreds and even a black hole, and if you were to look at her, she is actually a picture of health, and then there is me that has only 3 lesions, i have, speech problems, paralysis, blurry and double vision, and alot more probs. I ask my neuro why since i have so few, he told me that it was a good question. his answer is its not how many a person has, it is actually where they are located. Hope this helps.

It's so weird isn't? I go to a group and there is a girl in group filled with lesions and the only sx she has is once in awhile sum tingling on her thigh! and she is so non-chalant about it! I dont get it? Thats the kind of thing that makes me think to myself "is all this feeling crummy just depression?" "Is this all in my head?"

[bellaboostevens]

It's so weird isn't? I go to a group and there is a girl in group filled with lesions and the only sx she has is once in awhile sum tingling on her thigh! and she is so non-chalant about it! I dont get it? Thats the kind of thing that makes me think to myself "is all this feeling crummy just depression?" "Is this all in my head?"

It's not just depression and it's not just all in your head. My doc said it all depends where they are not how many you have.

right now i am having a flare up started with seizures, that effects my speech and left leg cannot move. they can't tell me that it is in my head. I just finished the 3rd day of iv steroids, speech is getting better, but nothing with the leg yet. that usally takes a little longer. apprently my leasion are just in the right place. HA nope! I'd say in the wrong place.

I hope you feel better! and no it's not all in your head!

[sunshine008]

hi


anyway someone wrote we will all be disabled by MS at some point or another. That is so far from the truth, MS as we all know is different for everyone. MS doesn't equal disability in all cases.

Some here have minimal lesions and huge issues all MS related. Some have huge lesion load, and no symptoms or minimal.

It is unfortunate that some do become disabled, yet alot do not. We just deal w/the bumps in the road MS can hand us with.

It is funny though I guess how doc's can't really figure out it and lesion load having anything to do with level of mobility or paralysis.

that's why i'm all about getting my mri's yet at same time I know it'll probably make me upset, yet won't necessarily cause further problems for me

[Thinkimjob]

It depends what you mean by disabled. My definition has gone from 'in a wheelchair' to 'can't stand for more than ten minutes', plus 'can't walk down stairs or on rough ground'. That's me, and I'm disabled, whether I like it or not.
Everyone will have their own definition, and it's probably not the one you had in mind before you got MS.
That's because you don't know how effortless ordinary old movement was, until you lose that ability.

[owlnona]

Hi!, I was dx in 2000,after 2yrs of in & out of hospitals being told I was having strokes. One day a dr. came in & asked if he could examine me I said sure. after about 30min.he said " I think something else is going on here". Than he said "Would you be willing to come to my office so I can do more testing"? Long story short, he took a long history,did several tests & gave me the dx of M.S. he was so surprised I was so happy.LOL. He has been my Dr.for 11yrs now & he & my whole family are very close.
I'm on Rebif & have only had 2 flairs in that time,1 caused by an Ecoli infection from which I almost died. I'm on a Rollator & in a wheelchair when I go out,but even after extensive P.T. I've never regained what I lost from the misdx.
I know everyone is different,that is just this MonSter biting everyone as it likes, but I've come to accept it. I have a wonderful loving family I live with who supports me & gives me the best care.
You do not know how you will progress,just take it day by day, build a good medical team & work closly/w them.
Keep us posted, God Bless Nona Judy