Just a question about lesions

Hi my fellow peeps!  

I have been doing a lot of thinking since I was just diagnosed.  I read a lot of your stories and feel so deeply sorry for your pain.  I actually feel VERY guilty asking some of my questions simply because it is so mild compared to many of you!  My question is this:  How can someone have so many serious problems with few or no lesions while someone like me has lots of brain and spinal lesions but very mild sypmtoms with only one pronounced flare up?  It makes me wonder - is a HUGE flare up on its way?  Will it be really bad next time?  My brain MRI was lit up - I counted at least 20 white matter spots while looking at it with the doctor and stopped early.  This disease is so complex and mysterious to me.  

I know I am thinking about all of this because I'll be starting shots for the first time soon.  My mind tells me I'm okay because my symptoms are starting to go away and I'm feeling normal again, but I know that it's necessary for treatment.  I'm sure it's natural to 2nd guess this disease  - I just want to be at peace with it all and I'm not yet.

More Questions:  Did you second guess the decisions you made early on?  I find myself doing that.  Did I pick the right neur. or DMT?  Will I regret it in 5 - 10 years for not picking a more effective treatment?  I wish I didn't do this to myself but hard not to.  

You guys have given me lots of advice and peace of mind in the past!  Looking forward to hearing from you!

Hugs To All,
Jeny

[HVAC]

Okay there are two mechanisms in MS inflammation which comes and goes and with it symptoms and nerve damage which causes permanent damage.  The DMDs help keep the inflammation from turning to nerve damage. Progression occurs in MS with or with out symptoms this is one reason you need to get on and stay on a DMD. Also DMDs work better at the early part of the disease.

Also MRIs only show white matter damage and a lot of MS is gray matter damage. Another thing is lesion location does not always correspond with nerve damage.  Also if most of the lesions are in the brain the body can make different pathways at first.

Never feel guilty for where you are with MS everyone is different. Finally the key point is what make us different is just where damage is in each of us.

It is normal to doubt your diagnosis and think it is not that bad in the beginning. It is a coping mechanism which keeps us from shutting down. Plus many of us had symptoms for awhile and get used to them. I was amazed at how much MS I had I never thought about.

It is also human nature to second guess.  Again each of us are different. We have to be well educated about our own MS and then act.

I only have three lesions I know of. I have PPMS and have chosen not to be on a DMD for my own reasons. I do not seek out much medical care because of cost and I frankly hate the whole medical thing. I will have to live with my decisions. I have probably had MS for 46 years according to many Neurologists. Nobody can live my disease but me.

Alex

[HVAC]

Okay there are two mechanisms in MS inflammation which comes and goes and with it symptoms and nerve damage which causes permanent damage.  The DMDs help keep the inflammation from turning to nerve damage. Progression occurs in MS with or with out symptoms this is one reason you need to get on and stay on a DMD. Also DMDs work better at the early part of the disease.

Also MRIs only show white matter damage and a lot of MS is gray matter damage. Another thing is lesion location does not always correspond with nerve damage.  Also if most of the lesions are in the brain the body can make different pathways at first.

Never feel guilty for where you are with MS everyone is different. Finally the key point is what make us different is just where damage is in each of us.

It is normal to doubt your diagnosis and think it is not that bad in the beginning. It is a coping mechanism which keeps us from shutting down. Plus many of us had symptoms for awhile and get used to them. I was amazed at how much MS I had I never thought about.

It is also human nature to second guess.  Again each of us are different. We have to be well educated about our own MS and then act.

I only have three lesions I know of. I have PPMS and have chosen not to be on a DMD for my own reasons. I do not seek out much medical care because of cost and I frankly hate the whole medical thing. I will have to live with my decisions. I have probably had MS for 46 years according to many Neurologists. Nobody can live my disease but me.

Alex

[Lulu54]

back in 2008 I posted this about lesion locations in my journal...

http://www.medhelp.org/user_journals/show/45847/A-shot-in-the-dark---why-lesions-dont-necessarily-make-me-feel-bad?personal_page_id=865800


When I saw my neuro for my MS diagnosis, he gave me an excellent analogy of what was happening in my brain with my lesions and my symptoms and why it was so important to start on a disease modifying drug now rather than wait.  Here is the lesson he shared with me -

Look around the room and find a wall that has a light switch on it. Now imagine what is inside that wall leading to the switch - there are wires but there is also a lot of other space that controls nothing.

Imagine you have a gun and start firing into that wall.  How many shots can you take before you actually hit some of that wiring in the wall and turn the power to the switch off?

Our brains and those pesky MS lesions are the same.  Not all of those lesions are wired to parts of our brain that control switches to our body functions.  But the more lesions we have the greater the chance of one hitting the critical wiring and flipping a switch.  

Taking the DMD's doesn't take away the symptoms we already have, but it is our current best hope of stopping future lesions from developing and turning our lights out.  

[Lulu54]

as for the guilt, please get over that, and do it soon.  Our journeys are all different and we can't begin to compare one person's illness against the next.  It has taken me a while to figure that lesson, too.  I understand your thinking.

We all play the second guessing game ... and at least I do it quite often.  

best, Lulu

[COBOB]

I have seen some studies that state "for each each MRI lesion, there are 20-30 lesions that are detectable by microscopic histopathology postmortem."  So if you see 5 lesions on the MRI consider that they may find 150 when they can pull your brain out and give it a good going over.  

Some technical discussion follows, but if you find a few lesions that are even suspicious of MS, you need to keep looking.

Bob
-----------------------------------------------------------

MRI misses a lot.  The NMR (Industrial MRI) that are used for lipid structure analysis are around 11 Tesla.  These units are pretty small and only hold very small sample container.  Medical MRI, for all its capability is a very coarse low resolution tool.  The images coming out of the computer are 1024 x 1024.   That is one megapixel.  Digital x-rays are 5 megapixles.  My SLR is 12 megapixels.  No matter how many Tesla the magnet goes, you have to capture the data in the computer and generate the image.  The ability to see a lesion is never better than the output, no matter what is in the model.

The whole lesion on the MRI thing is hunting for a needle in a haystack.  Think of taking about a 4 pound chuck of 80/20 hamburger and putting a small 3 mm chunk of 85/15hamburger in it.  You then use the fact the 85/15 has less fat and more water, so you spin it up in a magnetic field, use an "inversion recovery sequence" and hunt around for the difference in the signal to find the lesion.  In this example, the little piece of 85/15 hamburger is the lesion.  Other things get in the way, etc.  You are hoping to get enough signal readings (voxels) on in an X-Y-Z model to reconstruct the brain (or spine), without artifact.  This is all done by a bunch of radio antennas ringing the bore.  

If it sounds hard, it is.  The idea that damaged myelin looses fat and gains water is great.  Myelinated axons in the brain are small.  Areas of damage are smaller.  The difference in the amount of water between healthy and damaged (the gradient) is very slight....and...you are looking for water in something that is very wet and waterlogged to start with.

MRI is much better looking at cartilage, tendons, muscle in relation to bone.  There are higher "gradients."  This is the issue with cord imaging.   Smaller gradients than the brain.  3T helps, but you can't do full inversion recover sequences.  The energy SAR would exceed the limits.  So rather than moving the molecule 90 degrees (spine echo) and getting a good signal, they cheat and use only enough energy to move it 45 degrees (gradient echo).  Now the software has to look for a smaller change on that small target.  

[jen673]

Thanks for your wisdom once again!  I am glad I have you gals (and guys too!) to talk with.  It's different talking with someone with MS than someone (in my case - spouse) that doesn't.  They just don't absorb the info. like we do or quite understand how we feel even though I know they try.  It's nice to chat with people that have gone through what I am right now.  

Anyway, I thank God for all my family and friends, but also my new friends here on this forum!!!  

))HUGS((

[twopack]

Hearing Lulu's story was a big factor in helping me make my decision to start taking a DMD.  I still entertain frequent thoughts of the game of Russian roulette that's constantly being played  inside my head.  It helps keep me compliant.

I think it's natural to compare ourselves to others from time to time.  It seems the more I hear, the less I understand about the relation of lesion load to symptoms.  The brain and how it works is so very complex.  It seems the best docs are the ones to know how little they know.

I pretty sure nobody here wants anything but the best outcome possible for all other members.  Ask away on your question and never, never ever apologize for engaging in every bit of life you can every day.

Mary

[JemmAus]

"they may find 150 when they can pull your brain out and give it a good going over."

Thanks for that Bob. Went very well with my dinner!  

[jensequitur]

This is a really interesting question, and I really have to wonder...

I was diagnosed in 2007 after experiencing symptoms for about 2 years.  My brain has very few lesions.  The large one in my cerebellum and the positive spinal tap confirmed the MS diagnosis.

When I went to my MS specialist last year, she looked at me and said "You have very few lesions for such a wide range of symptoms."  She sent me for an optical coherence tomography test, which showed I have quite a bit of nerve atrophy - in other words, I have a lot of axon breakage without lesion formation.

It's my own personal theory that there are two or more different kinds of MS.  Maybe even separate disease processes that cause neurological damage.  Some present with lots of lesions, and several relapses and remissions.  Others have axon breakage, but few relapses in the early stages of the disease.  

In searching for a way to diagnose people with MS using a blood test, they found that they can find how well people will respond to interferons.  There are some that will have the flu-like reaction, and some will not.