Hi, i am new to this site and i read alot of postings and i am wondering if anyone knows if 25-30 lesions is alot or normal, or in-between? It was just confirmed that i have MS (3yrs into it) and i am a 37 yr old mom of a 4 yr old. I just had 12 viles of bloodwork done and everything they tested me for came back negative, which i am very happy about. I don't have an appointment to see my MS doctor yet ( i did call today but they were closed so i will call tomorrow) to go over my 2nd MRI results but i do have a copy here at home that my family doctor gave me. It sounds like french to me and i can't pronounce most of the words lol!! Anyways, if anyone knows anything about the 'numbers', please let me know. Thanks.
Hi there, and welcome to the site! First, I have to go to PT this morning, so I can't stay on here long! Take time to read the great Health Pages, the link is located at the top right hand corner of the threads and the forum.
As far as numbers. I know that some of our members have been diagnosed with as little as one lesion, other have many more and are still waiting for a diagnosis. I however, have never heard of someone having that many lesions with MS (25-30). But, I could be wrong. THere are many things that can cause lesions on the brain, and MS is, as you know, diagnosed through ruling OUT the mimics by bloodwork ( should be a LOT, including lyme, and I'm glad that your's was clear). And, when folks like me have confusing symptoms, they help the diagnosis with spinal taps, evokes potentials, etc. They also diagnose many diseases by how your symptoms present on the neurological exam and the history you tell them of your symptoms.
I'm sure other's will stop by to help answer your questions. I do hope that your neurologist will be helpful, and be sure that he is thorough and asks many questions.
Ever since reading your post, I have been all over the Internet trying to find out more information about lesion load. I have MS and been diagnosed for more than a decade. In all truthfulness, I have never heard of such a large lesion load and it still being MS.
There are so many causes of lesions in the brain, that a Neuro would have to tie everything in with your history of relapses and remissions and your observable signs on physical exam. I would hazard to guess that your Neuro has already done this and feels comfortable with a diagnosis of MS.
If you have had a spinal tap, I would be interested in knowing what that showed. Do you have any lesions in your spine? What physical problems do you have now, if you don't mind me asking.
Hopefully our resident expert Quix, will see your post and be able to answer this much better than I. I will continue to do research on the Internet and see what I can find out.
Welcome! Well, as Heather and the other say, this would not be normal. It will be up to the Dr. to determine the cause but we will certainly add our thoughts. But be prepared for more questions, if you don't mind..ha/ha.
You mention 3 yrs into it for your MS. I'm just guessing, but it leads me to believe that the Neuro determined this by going deep into your history with you and perhaps found evidence of a 1st attack? If so, this is a good thing because its important for the Dr. to put pieces together with the imaging, along with your physical exam and your past and present situation.
If not, did you go to the Neuro 3 yrs ago for your 1st imagine, and there was a "wait and see" approach, and now this 2nd report reveals 25 or so lesions? Either way, it's not normal.
So, here you are w/MRI reports in hand, and not knowing what they mean. This we can relate to, and waiting on appts is tough on your mind and patience. I actually had my boys read them. They picked apart the words, and did the math. They went as far as drawing up what the lesion looked like by how it was described mathmatically. Crazy huh? But, it helped w/the waiting factor, along with the members on this forum, which I hope you find a source of comfort as well.
We're here w/you throughout so you don't have to wait alone.
Welcome to a great site, and welcome to the club that no one really wants to join but everyone is welcome. I am sorry to hear that you have been diagnosed with MS.
As others have already said, that large number of lesions sounds out of sight compared to what most of us have. Maybe the information was conveyed incorrectly? Either way it doesn't matter - what does count if how your MS neuro wants to treat your disease and assist you in getting on with your life.
I hope you will come here often, continue to share your story with us, and join us in this crazy journey.
I'm not diagnosed, but have an MS specialist that saw me in the middle of a flare of symptoms and is very interested in figuring out what is going on with me.
I have multiple small lesions in my brain. As in, they didn't even count them because there are so many, and when I had a comparison follow-up MRI done, it was noted that they could not be sure that there have not been any changes because of the sheer number of lesions.
I guess I'll never be "normal", but I'm definitely proof that someone with neurological symptoms that may be MS can indeed have 30 lesions or more. Of course, some of them could be from migraines, or whatever. I'm hoping they'll figure it out someday.
I'm glad you've joined us here; it's a great place to be. We have people that can give you more informed answers, we have people that can make you laugh or feel for them; its like a big caring family.
As Kathy sez, it's quite possible to have MS and have 25-34 lesions in the brain. Most of us don't have that many, but it really depends upon the individual and their immune system's reaction to the disease. At your age, that diagnosis makes the most sense.
This is just my personal observation, but I've seen a lot of people on this forum with many lesions, and they tend to have a more benign course of progression.
Feel free to post the results of your MRI here - we're all used to deciphering radiologist jargon, so we might be able to help you make some sense of it.
Please keep in mind that ONE lesion strategically placed in our brains can cause total disability, while dozens of lesions may have little affect. It's just like Real Estate, it's LOCATION - LOCATION - LOCATION.
The number of lesions has very little to do with actual problems from MS, it's where they have taken up residence in the brain that matters. The brain is a remarkable organ and can adapt quite well to damage or areas of demyelination. One person may have two lesions and be totally dependent on a wheelchair and then there is me, who has 12 lesions in the brain and one in the spinal cord and I do NOT need aid to walk. It's just plain confusing.
Hi, Welcome to the forum! I have certainly heard of people who with MS who have dozens of lesions and I have heard of people who have 40 or more. Some people have lots of little ones and some people have fewer larger ones and every combination in between. The critical thing with regard to disability is the total volume of the lesions put together. Also, as Heather points out, it is where the lesions are that determine what the symptoms will be. You can have dozens of lesions in the part of the brain that we don't know the function of and maybe have very few symptoms. But, a couple small ones in the brainstem and the spinal cord can be very disabling.
I have one small lesion in my brain, but 6 in my spinal cord and I DO often need assistance to walk.
You might want to read the second Health Page (see the link in the upper right hand corner) called "Lesions vs. Symptoms."
I think the thing to take away from this is that you cannot predict a the severity of a person's current disease nor the course that disease will take by counting the number of lesions. So, do not take the high number as any guarantee of anything.
I hope you stay with us. We have a lot of great people here and we share a lot of great support and info. Since you are new to MS, be sure to look through the different Health Pages we have written for things that a lot of people ask. Be sure to take lists of questions to your neuro. MS is not a death sentence. It does not (at this point) shorten your life, but it can present some significant bumps in the road. You will see your son grow up and enjoy your grandchildren - at least from an MS standpoint.
The blood work that they did was to rule out the "mimics" of MS. So, only when they are negative can the neurologist truly establish that someone has MS.
I am also new to this site. I found it trying to find out what is normal for lesions. Can any one help me with this information.....
My MRI report states: there are approximately 40 to 50 supratentorial lesions and 5 posterior fossa lesions. At least a third to half are modrate in size, Most of these lesions are in the periventricular and deep white matter with a few in the juxtacortical location. Approximately 15 low T1 signal lesions are in the supratentorial brain and 3 in the posterior fossa.
A moderate-sized cord lesion is cintrally located at the C3/4 level. A large confluent lesion extends along the left side of the cord from C3-C6/7. Two lesions are in the brainstem at the pontomedullary junction and other lesions in the cerebellar hemispheres.
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