Question..When lesions in the brain are forming can you feel it and is it painful ?
 

:(I'm asking because I've had head pain( pain sometimes like by my ear or on the other side of my head or top of my head) off and on for awhile. I'm scaried that this could mean more lesions which I don't want or need. All opinions welcomed. Thanks Kristi

That is a very good question. I don't know the answer, but hopefully someone else will. My prayers are with you.

all i know is my neuro said no brain pain isnt part of MS, yet when they finally discovered my MS it was because i had extreme brain pain, and as to any neuro knowing all the answers I doubt they do, they dont even know exactly what causes MS, so i am not sure and am pretty sure this answer didnt help you, wanted to let you know i get more headaches now i never got headaches, ever before, see what doc says i see way too many folks on here complain about headaches, are your eyes bothering u, could be an occular magrain

I've never heard that lesions cause head/brain pain. I can't see how they could, but I've been known to be wrong before.

Cherie.........where are you when we need you? . :winky: . :D

I don't think I know the answer . . . imagine that?! :p

I know when my spinal lesions are acting up, but I don't really have too many brain lesions to know from experience. For me, the spinal ones cause pain, directly where they are. My doctors don't even have to do a MRI on me any more . . . I just tell them which lesion it is . . . and then we all wait for the fall-out. :rolleyes:

A number of people have major headaches with MS. Maybe there's something to that. I wouldn't be surprised.

Cherie

That explains the neck pain and the pain in my back (two spinal lesions)

I dont think the lesions would be causing pain, but I do think that people with MS have more headaches and migraines than the general population does. It's possible that the migraines and headaches could be caused by the MS doing something to a nerve that's felt as a pain in the head somewhere.

Kristi -

I know when at least some of my lesions formed. This has been confirmed over the years and MRI's. It's a subtle painless change. I'd like to say dizzyness but it's really not. Kinda like maybe vertigo. It's hard to describe.

It happens once or twice a year. This is consistent with the number of lesions I have. The first one I "felt" was in 1993. I've had MS since 1988.

Oh, by the way, one of my initial symptoms was a very sharp pain in the lower left back quadrant of my neck. This stayed with me for 16 years.

What part of Detroit? I grew up in Northville.

Tom

I wouldn't think it could be possible, but then again, I get these stabbing ice pick pains sometimes and I wonder....

Kristi, I don't think it makes sense that it would be detectable but I must say that having had some odd fleeting head pain, I've thought about this myself!

Lesions on the spine can definitely cause pain. I have one on my t-spine and the radiologist's impression said "back pain, multiple sclerosis".

As with everything else with this nutty disease, nothing seems to be absolute. I've had flares with no pain proceeding it, and I've had others where I've had ice pick headaches in the same area as the new leisons.

My neuro just goes "hmmm" and jots it down. My own theory (and it's just mine, I'm no doc :rolleyes:) is that because my new leisons flare and go inactive so quickly it causes some pain. During my DX process, I slowly increased from 4 to 9 leisons in my brain over the course of a year. Never active under contrast.

Thanks for all your opinions guys.See a year before my Diagnoses I had headaches all the time lasting days on end and I could't figure it out. See I was never a headache person before if I had 2 or maybe 3 headaches a year that was it for me. So I knew something wasn't right. I think there probably is a connection btw a lesion and pain, I'll guess I'll find out if I have more lesions( I hope Not) in May when I have my second brain MRI. Well, I'm off to work see ya'll later.

Just to clarify, and hopefully ease your mind a little between now and May, if there is a connection, I suspect it might not necessarily mean we have "new" lesions. Perhaps it's our old one's that are currently active/inflammed. :cool:

Cherie

WOW! Eye opener! I get sinus headaches often. But occasionally I do get this weird stabbing, nerve pain kind of thing right where one of my lesions is (periventricular area). I never related it to MS though.

I also never made the connection between back pain and the lesions. I just assumed I slept funny or my spasticity was acting up so much that it was causing back spasms. Now I'm thinking . . . .

I do know that migraine headaches can cause lesions; NOT MS lesions but lesions. I learned that at my 1st neuro appt years ago when it showed a few lesions. The neuro did tell me at that time all the causes of a lesion and although mine were similar to those of MS she could not say I had MS as at that time I showed no clinical symptoms of MS. I'll tell you, I left that appointment so relieved. (Of course, I was back there 3 years later getting a definite diagnosis.)

Heck, my brother through his neurological research has undergone many MRI's as a "test" subject. If I remember correctly, I believe he told me he has a lesion but that it was due to either migraines or a virus.

A friend of mine is a neurologist specializing in migraines. She said that they see many MS patients (not unusual for migraines to accompany MS) and also that there are definitely some MIGRAINE lesions that can resemble MS lesions and vice versa. She added that MS lesions tend to be "deeper in the white matter" but there are cases where it is also not so clear.

Thanks Cherie you know I never thought of it that way.

I really hate how different neuros say different things about lesion location. I have quite a few "deep white matter" lesions and my MS specialist says that isn't typical for MS. Your friend seems to be saying it is. Argh!

Holly, thanks for saying this -- I will ask her again to make sure I didn't mix up what she said!

Holly, I just heard back from my friend. Here is an excerpt from her email:

"Yes, you remember correctly. Typically, MS lesions are found deep in the subcortical white matter and around the ventricles, though there can be lesions elsewhere. In migraine, the lesions are often not as deep, though there are migraine patients who have MRI's that look like patients with MS (this is a minority of migraine patients). When I meet a patient who has migraine and has an MRI with multiple suspicious looking lesions, I usually either refer them to ensure nothing else is going on or repeat the study to ensure stability. There are other causes of deep white matter lesions. Hope that answers your question."

That is very interesting and I really appreciate you asking your friend.

I have one MRI report that states that my particular lesions are often seen in MS patients. I have another MRI report that says they are suspicious for demyelinating disease specifically MS, but to also consider Lyme and small vessel disease. Then there are the reports that just state that there are multiple lesions in the deep white matter.

I have had one neuro (my 1st neuro) flat out state that my lesions are no big deal - called them UBO's and said they could be caused by the migraines I don't have. Both MS specialists I have seen consider them to be demyelinating but the sticking point seems to be a lack of the periventricular ones. So, I kind of think your friend cleared up one thing for me when she mentioned that part.

It seems that I have one part of the puzzle. The neuros seem to be confused about the lesions appearing in the deep white matter before any evidence of the periventricular ones.

One of them said something one time to the effect that they usually appear in the periventricular area first because of the blood brain barrier issue. I'm sorry I can't seem to explain that better. I can't come up with the words today. It was just something along the lines of the area in closest proximity to the ventricles being more easily attacked???:confused:

The first neuro I had (UBO boy) was totally convinced I had MS until he saw the MRI results. Based on my neuro exam, he said he thought he would find my brain loaded with MS plaques. What he found was a bunch of smaller deeper lesions. I am pretty convinced that if I had periventricular lesions right from the start, I would have had a dx back in 2004. Luckily for me, he was still convinced something was really wrong and he sent me onto MS specialist #1.

My current dx is CNS Demyelinating Disease because my neuro won't quite call it MS because of my atypical lesions. He says it is "atypical MS" and treats me with IVSM (we used to do pulse IVSM before my bones started thinning) and treats my sx with the same types of meds as MS patients (i.e. Baclofen, Provigil, etc.) but isn't willing to use any of the DMD's or Tysabri on me because they were made for typical MS patients with typical MS lesions and he isn't sure there would be any benefit for me.

The one thing he has stated quite clearly is that my lesions are definitely demyelinating and they are not normal in someone my age. He told one of the med students in with us one time that white matter lesions in a younger person are never normal, but that some doctors will just call them "normal" when they don't have a clear answer for a patient. He made it pretty clear that he doesn't think that is appropriate.

I just think this whole subject is kind of fascinating and reminds us that there is so much they don't really know and understand about this disease and even about lesion formation and location.

You're welcome and I completely understand what you are saying about the BBB. That said, there are a host of people who eventually go on to be dxed with MS who initially present NO lesions. So although I can see how it would make sense to think that the breach would initially manifest itself closer to where it crosses the BBB, I can also see how this perhaps shouldn't be such a sticking point. Almost NOTHING makes finite sense with this disease!

I know I've posted this elsewhere (perhaps in this thread!) but my MS specialist told me that 90% of all demyelinating diseases turn out to be MS. Holly, I think you're on the right track -- but if it is your wish to be treated with a DMD, I hope you do go on to get an official dx.

This is an interesting thread.

I do know that with my exacerbation from you know where there was a LOT of head pain in my left temple....the lession was in the cerebellum....a lot of my subsequent problems were on the left side.

And I like Tkrik have always had these strange zing pains that just bolt out of nowhere, but I am almost certain that not all of these would be relative to lessions, then again...

I'm going to have to put this on my ask my doc list! (He'll give us another answer!)

Zing pains - yes - have had those for quite a while - out of nowhere - used to think it was because I turned my head but no - that's not it -

I'm sure glad I posted this question it is very interesting indeed,very though provoking I'm glad it's gotten so many replys.

Polar, I don't know why/if the c-spine would be any different but I can tell you that t-spine lesions can cause pain. I have one at t-10 and the radiologists impression read "multiple sclerosis, back pain".

I start out with a "spinal headache", similar to a LP headache. It begins in the C-spine where the lesion is (very, very bad pain :mad:) and radiates to the neck shoulders. Eventually the pain goes up under the skull at the back, and as the day wears on it settles in my forehead. All I can do to get relief is lay down, for days to weeks on end.

. . . next comes the numbness . . .

Cherie

good evening Kristi.

when I got "ice-pick" stabbing headache pains (behind my R. ear, by my R. temple, in back at the base of my skull, and worst of all, INSIDE my R. ear) my neuro said he thought it was Trigeminal Neuralgia.

In multiple sclerosis, the most likely cause of Trigeminal Neuralgia is lesion damage to the Pons region of the Brainstem where the 5th cranial nerve arises.

http://www.mult-sclerosis.org/trigeminalneuralgia.html

more info here:

http://www.mult-sclerosis.org/news/A...Neuralgia.html

Cool! . . . I think. :cool: :(

I do not do any exercises what-so-ever when this is happening. It's up to you what you want to do ... but I wouldn't, personally.

It should let up on it's own in about 3 - 4 weeks. I use 1000 mg of Naproxen daily.

Cherie

I don't know about if the headaches mean lesions are forming but I have had so many headaches through the years on the right side. They always start at the base of my head and move up and over the top and right side coming down the front to above or behind my eye. These started when I was 17.

Now that I have developed sx of burning, the burning has started accompanying the headaches in the same location and at the same time, then follow it up with burning extending down the right side of my face and down my right arm and hand. Weakness has now developed during these flairs. When it is really bad, I just lose most control of my hand and arm. Sometimes it feels like it's going to float away.

This is probably not an answer to your question. But it is interesting on this site, when you start reading about others' experiences, it helps you put 2 and 2 together. Now I'm wondering if my headaches when I was a teenager could have been one of my first sx?????????????????????? Any ideas?:Scratch-Head:

Does anyone else...
 

have headaches along the same path as burning waves coming up and over one side of your head then down to behind your eye?

I subbed yesterday and I had a very interesting coversation with the 6 th graders I was with about my MS and MS in general.

One of the kids asked....do you feel it in your head when the scars are being formed?

Isn't that unreal that this question that I never contemplated has been brought up here and then by a kid???

OMG.. Bird :holysheep: that's really freaky. I never dreamed me asking this question would get so many replies, I just asked the question because of my headaches and then now with this kid asking about the same question that is unreal.

I really thought it unreal too, because I have discussed this with kids before and no one has ever asked that!

I do know that they say we have no feelings in our brain....but watching my daddy with a brain tumor....he was in pain....so I really don't know if there is pain or not!