Lesions all over the place!

[kittysmith]

I've been diagnosed with MS since 2008. I work at the hospital where I was diagnosed. I've been to the MS doc numerous times over the years. Today, since I have computer access to my records, I finally looked at the MRI report from june of 2008. All this time I thought I only had 2 lesions. I don't know where I got that from, but it stuck. Not that it makes any difference in my care, it was just suprising.

According to the report, it looks like I have 5 periventricular, many scattered white matter hyperintensities, approx 6 or so subcortical . 2 appear to involve the subcortical u-fibers.

I feel so weird. I had no idea I had so many. It explains so much about the types of isssues I've had. For some, I know that's not a lot. It was just eye opening.

Has this happened to anyone else?

[workinmammaof2]

Yes...

I work in the field and have access to my records and MRIs. Though, I have looked at them with my own doctor who likes to pull them up when you have an appt...

So, I am not surprised by mine. Sometimes it can be hard being so closely involved in the field...

[Creede]

Yup

There is a similar thread to this goin on somewhere... anyway yes, I was suprised too, but I think doc and I got suprise at the same time.

MRI's used to come back reporting on each lesion and now they just say "Lots" of lesion wherever they are on my spine..

It took me a while to get used to what did not seem like a very technical term at all... but when there are "lots" I guess there is no real sence in counting them all up...???

And workinmomma, I think that is so cool that ur doc actualy goes over MRI's with you. I wish mine would do that! Do you know if that's a norm or do you just have a really good nuero... or both???

Good Luck to you and I don't know if it's comforting (hope so), but know your not the only one with lesions "all over the place"!

[workinmammaof2]

good neurologist

Creede

I do have a very good neuro in an ms center. It is fairly common for them to go over mris with patients.

I dont have tons of lesions...just some in not so good places...

[winnie123]

My experience was first 2 MRIs claimed I had between 10-12 lesions and when I switched Nuero's I asked for a radiologist to do a re read and turns out I had a total of 23 lesions. Did not seem to make a difference in Nueros opinion as it still kept me at probable MS until they see a change on MRI or New Flare..

[kittysmith]

I read that where some of my lesions are cause balance issues (got em) and memory problems (got them too). I hate having this disease, but it is fascinating to actually see what kind of damage there really is. It would me much more fascinating if it wasn't me.

[Alicious]

I hate having this disease, but it is fascinating to actually see what kind of damage there really is. It would me much more fascinating if it wasn't me.

Quoted for truth!

[mjan]

So it sounds like you were not told and that is what bothers you? Yes? Remember its not the number of lesions, per, se but its one indication if the DMDs are working I guess.

BUT.. when I worked for a health corporation, I was NOT allowed to look at my own records and told that they would learn that I did. Does that sound right? Were you ever told that?

Jan