How many lesions is bad?

[nicole1389]

Hi all, I was newly diagnosed with ms 2 weeks ago, mainly because of brain lesions and symptoms. I know everybody is different, but do you guys know typically what is a bad number? I currently have approximately 10 active lesions and 4 old, is this typical? I am having tons of symptoms and feeling like crap, and I can't find anything regarding number of lesions that are typical in MS patients besides the numbers that are used in the mcdonald criteria.

[Mable]

Hi Nicole,
I was diagnosed a little over a year ago. I have about 14 lesions in my brain and one or two in my spine. You probably know by now that no matter what you ask the answer is "everyone is different." But I'll tell you my experience.

I spent 5 days in the hospital getting solumedrol. Got on a DMD right away. Just had my 1-year follow-up MRI, and there are no new lesions, no active lesions, and some of last-year's lesions are much smaller (one big one shrunk to 3 little ones).

I don't have any new symptoms, but have spent much of the last year getting used to my old ones...I was pretty freaked out.

Medicine is getting better and better at keeping us disease activity free. I also have networked a lot and met at least a dozen people in their 50s and 60s with MS who are doing just fine.

Yeah, we all have a few deficits; for me my eyes seem weak and I get tired in the afternoons, but that's about it. I go for a walk or a swim most days. Work. Volunteer. Travel.

You might be just fine. Be good to yourself.

[nicole1389]

wow, thank you so much, that answer helps a lot, because yes, you're right, the answer I always hear is "everyone is different". It just seems like for a first MRI and diagnosis, 10 is a high number.

[javaaddict]

In my view, 1 is bad!!! Each lesion means there was/is damage.

It depends on WHERE they are and what they are affecting.

[Thinkimjob]

It's supposed to be location, rather than numbers. Good luck, and a lot of it is luck.

[Alicious]

I have 20-30 brain lesions (the count varies because MRIs are only so precise). I may have 2-3 black holes. Since diagnosis, I have only had one new brain lesion discovered, which means I had about this many at diagnosis. I also had a massive lesion in my spine at that time that has since healed to the point where it is no longer detectable on an MRI.

Onset was 6 years ago, and other than one eye's vision issue, you would never know I have MS. I can pass a neurological physical exam with flying colors. I'm saying this because MS is scary as heck, but the future is still wide open. 14 lesions doesn't have to mean the beginning of the end.

Certainly the number is relevant, but as a previous poster said, it's really about where they are located and how quickly you are getting more, rather than the number you have now. Also, how you feel now is probably not how you will feel in a few months. No one can predict how you will heal, but at diagnosis half of my flesh was numb, I could hardly walk, and had no fine motor control I'm one hand. Now I'm feeling pretty much normal.

I can't find reliable lesion info online either. Well, I find "more is worse," but not what more is. More could be 5 or it could be 50. You have half of what I had at diagnosis though and I'm (knock on wood) doing great, if that helps.

[SNOOPY]

Hi all, I was newly diagnosed with ms 2 weeks ago, mainly because of brain lesions and symptoms.

Hi nicole1389,

Based on your introduction you are not currently diagnosed with MS but going through the diagnostic process to try and find out what you may have?

Lesions are abnormalties, something found on a MRI which should not be there. Many things can cause lesions.

Regardless, even one lesion is not a good thing.

I currently have approximately 10 active lesions and 4 old, is this typical?

There is no typical or average in MS, not even the amount of lesions. Lesion load can change, increasing and decreasing. Lesions can be found anywhere within the Central Nervous System (CNS) which includes the brain, spinal cord and optic nerves.

[lstrl]

I have 20-30 brain lesions (the count varies because MRIs are only so precise). I may have 2-3 black holes. Since diagnosis, I have only had one new brain lesion discovered, which means I had about this many at diagnosis. I also had a massive lesion in my spine at that time that has since healed to the point where it is no longer detectable on an MRI.

Onset was 6 years ago, and other than one eye's vision issue, you would never know I have MS. I can pass a neurological physical exam with flying colors. I'm saying this because MS is scary as heck, but the future is still wide open. 14 lesions doesn't have to mean the beginning of the end.

Certainly the number is relevant, but as a previous poster said, it's really about where they are located and how quickly you are getting more, rather than the number you have now. Also, how you feel now is probably not how you will feel in a few months. No one can predict how you will heal, but at diagnosis half of my flesh was numb, I could hardly walk, and had no fine motor control I'm one hand. Now I'm feeling pretty much normal.

I can't find reliable lesion info online either. Well, I find "more is worse," but not what more is. More could be 5 or it could be 50. You have half of what I had at diagnosis though and I'm (knock on wood) doing great, if that helps.

As someone who was recently diagnosed, you have given me a lot of hope. I could barely walk when I was diagnosed and I want more than anything to be able to walk normally again. I've definitely improved quite a bit, and this gives me hope that maybe I'll continue improving until I can start living a normal life again.

As others have said, it's all about location. My first MRI only showed 2 lesions in the c-spine and none in the brain and it caused me some numbness and weakness in my wrist, but nothing too terrible (and it completely cleared up with time).

A year later my c-spine MRI said that there were an extensive number of lesions (which really scared me and I thought I was doomed when I read that), but at that date, nothing in the c-spine was active and in the year between MRIs, I really didn't have much symptom development until my latest flare right before that MRI (and it must not have come from that area). I've only got 2 lesions in my brain (both new and active at latest MRI), and aside from the occasional dizziness (which I have no idea if it's related or not. It randomly happened to me before I had MS), I don't think I have any symptoms that indicate they're coming from my brain.

I've read so much about MS, so I can't say where I read it, but it sounds like it's very typical for an MS patient to have tons of lesions all over the place, and as weird as it sounds, it doesn't necessarily mean they're living this horrible life where they can't do anything anymore. It still sucks if you find out that you do have a lot (like what happened to me), but it is nice to know it's not the end of the world.

[gloobylube]

Hi I am new to boards and awaiting a dx, I expect today at my annual pyhical, she will order an MRI, had one 9 years ago, no lesions, thing can change in 9 years, so I dont know what to expect, I have presented with symptoms on and off for 9 years now.
I too am pretty freaked out. I currently have every symptoms of MS going on. soonest I could get into nuero is 5-1.
hopefully with all the symptoms i have she may be able to expeidite that.
I just wanted to introduce my self and let you know you are not alone. Hope you get ansewrs you are seeking, i will report back what PCP has to say later today in my thread, labeled need answers, or something like that,I am having terribe brain fog latley too.
anyway good luck to you

[tambrown]

I went from 1 lesion to numerous and I had a ton of sx but most went away . I'm only dxed with CIS . I go to a ms neuro he has stopped seeing all pts except his ms pts and I still see him with no dx . Things that make you go hhmm Tammy

[nicole1389]

Thanks guys, all of your info really helps put my mind at ease.

[HETA78]

There really needs to be more threads like this one! Giving people hope. When I was first diagnosed, I spent too much time on here and was totally freaked out by all of the negativity. I felt doomed.

In November 2012, I had woke up to a case of double vision so bad that my left eye was pointed in the complete opposite direction. The 8 weeks following would lead to IV Seroids, an eventual recovery from the neurosis, MRI's, VEP test, spinal tap, car wreck, blood patch from spinal headache, holidays, a second relapse brought on by the stress of all of the above, prednisone, and severe depression and anxiety. My entire left side became numb from the top of my head to the tips of my toes. I thought "well, this is great... here's my new life and it's going to suck".

Fast forward to now: I've been on a DMD (Copaxone) for almost 4 months. Most days, I feel great. When I'm tired, my vision can get blurry but I can refocus easily. Also, after a busy weekend like this past one, I get a little fatigued and my legs feel like they're really light. Otherwise, you'd never know I had MS. My last neuro exam was wonderful, I see an MS Specialist and he gave me two thumbs up and a high five. I am back to the old me, for the most part. I'm back to doing my boot camp and kick-boxing work outs, I can even run up the stairs most days. The biggest thing I have had to change is to learn to take it easy on days that I am fatigued. It's hard teaching yourself to slow down, especially when you're a mile a mintue kind of gal, but you know, despite what others may tell you, it really could be worse.

Good luck to all of you who are newly diagnosed or in dx limbo. I'd be glad to be your newly diagnosed buddy if you need one.

[Alicious]

MS can be absolutely devastating, and I don't want to candy coat it, but think about this: most people who come to this board are either new and scared, or in a bad health situation and needing advice and comfort. Most of the people who have MS and are doing well don't come here because they don't need to. Because of this, the board is skewed very highly toward the worst of MS. I've been here for about 2 years, and Ive seen many of the people doing well come and go because there just isn't that much to chat about, but at the same time, we don't want to make others feel bad who are having a tougher time with the disease.

No one knows what tomorrow will bring, least of all with MS, but I'm not the only one who is doing well and hopes to continue to do so. All we can really do is take care of our bodies, take our meds, and hope for the best. There is still life after MS, however, even though it can be hard to see when you're in the thick of the fear of limbo and diagnosis. xoxo

So I guess if you need some MS rainbows and sunshine, I'm your gal.