This Is MS Multiple Sclerosis Community: Knowledge & Support

Does anyone know if there is any correlation between Lesion patterns and types of MS? or severities of MS?

My MRI, as of almost a year ago had many lesions, it looked like buck-shot scattered over my brain. All of the lesions were small, but there were many. I have ZERO known symptoms as of now. I was curious if anyone would share their situation compared to their MRI's?

Brock

I've had MS for 15 years at least and I have about 4 lesions that look like small clouds on my scan. Over the 15 years they have barely changed and barely grown. I could jog for 6 years after diagnosis and am now am SPMS with no real change in the MRI appearance. I have been on copaxone since it came out. One might say that my inflammation has been "controlled" (as evidenced by the "clean" MRI which my MS specialist says is so good it looks like many people on a first visit) but the disease progressed anyway. Functionality is where it is at.

Marie

What would you consider your EDSS at this point?

5.5. I use a cane most of the time and have significant drop foot on the right that trips me often. I have some mild disability in my right hand as well, with it beng clumsy etc.
Marie

Marie,

Your story plays to my biggest fears. The focus to date has been on reducing inflammation - through the CRABS and also the heavy duty immune suppressing drugs e.g. chemo drugs. The focus of these drugs has been to reduce relapses / inflammatory activity. But the really worrying aspect from some of the early Campath 1-H trails on SP patients was that whilst relapes and inflammation / new lesions were pretty much irradicated, nerve loss (atrophy) and, therefore, disability continued i.e. the disease still progressed.

They can play with inflammation as much as they like, but it still does not appear to arrest the progression of the disease. They really need to find out what is destroying the nerve fibres - is it because they lose their myelin wrapping or is some other process at work? While the researchers keep claiming that they have a better understanding of the disease I'm still not convinced. Focus must shift big time to neuro-protection and repair. Your so right about functionality!

Ian

Is it possible that it is some sort of vascular disease? Especially in Marie's case... She had those same lesions, and no others. If it were auto-immune why would it stay in those particular spots??? I don't think it would. If it were viral it would, I would think, disseminate through the CNS more evenly. Why would it affect only two areas of the brain? But what if that area of the brain wasn't getting consistent blood flow? causing on going and persistant damage?

See link, its a good write up.

http://bmj.bmjjournals.com/cgi/content/full/325/7373/1128?etoc

I need a translation on this document. It goes over my head, although I think it has some good information. Check it out, its a PDF.



[edited: Must copy and paste link, since it includes a strange character that messes up the forum software]

Well as I live and breathe I'm what we do not want to see. At my point I am exactly where the MS progression charts expect me to be. In fact I may be a little worse. When I started to see my MS specialist I was still jogging at 6 years and he said we would not expect you to need a cane or anything until you are 60 or so, so little progression at this point bodes very well for you at 6 years. You may be benign but early injury that we can't see is what we want to stop so we want you on copaxone. I thought long and hard, decided he was the doctor what did I know, then went for it. I wanted to give myself the best chance and with a benign course maybe MY MS would be stoppped altogether I thought. Well now you see that at the age of 45 I need a cane all the time and certainly am not benign.

I realize others have other points of view but I ask you to let me say right out here and now from my perspective it is obvious that MS is not what they think it is and from my point of view autoimmunity is a red herring I am a RN and I have read the research also. autoimmunity is not proven and it scares me that they keep acting like it is.
I am taking abx. they are safe and even if they did not work (they seem to be helping me) they are benign. it's my best chance. Marie

Marie,

I completely agree with you. It is a major problem. They need to stop pursuing Autoimmunity as the sole foundation for MS research. The most valuable cost is time wasted, and we don't have all of the time in the world to waste. I hope that researchers start thinking outside of the box as soon as possible.

Best Regards,
Brock

No body else?

hi v did you have symptoms at the time you got the mri and they have cleared up? or did you have an mri for something else and then they were like, oh look ms?

i had heard that all kinds of ppl have little holes in their brain but because they never have noticeable symptoms from them, they never end up having an mri ordered and they may never know there is a problem (unless they get an mri for some other reason). i think they call this "benign" ms.

i don't know about patterns of mri and types of ms, but i do know that the presence of optic problems at first presentation is associated with more benign types of ms. too bad for me, 20/20! :S

my mri shows little holes all over my brain. the biggest one is about 1cm. i think they needed 9 or 10 to be able to hand me the ms verdict, and they had a time finding enough but they did it.

i do not have any symptoms or signs associated with any of the brain damage.

what i did was look at where my lesions were, studied the brain, figured out what areas were affected by the lesions that i could see on the mri, and then i looked at what would be affected by the spinal cord damage. i had problems with fine motor (i thought) so i was concerned that i had a manifestation of cerebellar damage, but the physio doc said no, it was just a sensory deficit impacting my motor function. and sure enough, as my sensation has started to return, the motor issues went away.

all my problems therefore stem from the two honkin spinal lesions. actually the thoracic one seems to be on the mend from how my symptoms have improved. my cervical lesion, which obviously takes a lot more action what with all the head-banging and watching tennis games (okay well maybe just shoulder-checks), is taking longer because i still have impaired sensation in my hands. typing has improved but i still don't enjoy towels, or playing guitar, and i pay the salon to wash my hair for me.

i smacked my head in a snowboarding fall 2 days before this first attack swept through, so i think that started everything, exacerbating pre-existing damage in my cervical cord, causing inflammation, yada yada. i think that is why my C7/8 symptoms are taking the longest to get lost.

anyway back on my soapbox for a sec: did you read that study about vitamin d supplementation halting the progress of murine eae? wouldn't it be great (assuming that there is a flawed immune system partly responsible) if you could slam the brakes on your ms right now, with no noticeable symptoms?

that's all for now

Gary had first MRI in 10 years last year. He is about a 6.5 on Disability Scale. Walks on cane, total blindness in one eye, legally blind in other eye. Has some hand coordination difficulties, not much. First MRI's, 10 years ago, showed nothing but scarring where he had spinal surgery. Questionable to the surgery. His brain scan last year showed 5 leasions in the brain, stem area. She said they looked old. He was on Copaxon for about 4 - 5 years, Betaseron before that for 2. He'll get spinal scan this year. Gary has been paralyzed from the neck or chest down MANY times and had to learn to walk all over again. When he went blind, 20/400 vision, they saw NO immflamation in and around the optic nerves. So I agree, it is time to look elsewhere. It ain't totally happening in the brain or spine. Even makes you wonder if it ain't several diseases instead of one.

My first (and only) MRI was done 25 years after my diagnosis. The neurologist and radiologist I had then could not find any lesions even though I drug my leg and had terrible balance issues.

I went to another neurololgist at Barrows Institute in Phoenix later with my MRI X-rays and he immediately pointed out four small (size of commas) lesions to me and said those were MS lesions. He had a double Neurololgical degree and was more capable of examining MRI's than my other neuro. The size of lesions did not correspond to my physical disability and I was very surprised that my whole brain wasn't a big lesion.

There does not appear to be a correlation between lesion load and disability and that is written about frequently. Therefore, I do not understand why so many MS'ers want to shoot the tube to check on their lesions. It has always seemed like a huge waste of insurance companies money to me.

This is one time where size really doesn't matter. Lesions are at times hidden in the brain and are not picked up with MRI's. A good neuro can tell from a physical exam where the lesions are and since they can't be cut out or zapped, it really doesn't matter how many there are or how big they are.

gwa

Jimmy,

My first MRI, occured during my first (and only) clinical manifestation of "MS". When the neuro showed me the MRI film I about lost it. There were so many little bright spots all over my brain. One thing to note is that I was consuming A LOT of diet soda, diet pepsi to be precise. That is practically all i drunk. I had also just stopped using a diet pill, phentermine, and not even two weeks later I end up in the hospital for Nystagmus. It makes me wonder if there was a chemical interaction that took place from either the aspartame, or the phentermine, or as a result of both???