MS type lesions but not in correct place?

[PatHC]

Hi Guys,

I have been researching this since my neuro appointment last week but have been unable to find an answer so far.

On my brain MRI one of the larger lesions is what the neuro described as typical for MS but as it does not touch the ventricles he cannot say it is definitely MS.

What he was describing was an ovoid shaped lesion (looks like a Dawson's finger which was very close to, but not touching the ventricle (which he described as 'water in the brain' ) I do wish they would use the correct terms it makes research easier.

Any ideas gratefully received - does it need to touch that part - has anyone else had this?

Thanks
Pat

[ShockedToday]

I keep posting a reply and something keeps happening to it.  Anyway, I feel your frustration on researching lesion locations.  I drove myself crazy doing it because I have some classic MS lesions and then some atypical ones.  (I always have to be the strange one........lol).  

This is a great site:

http://www.med.harvard.edu/AANLIB/home.html

HTH you,
ST

[Lulu54]

Pat,
No the lesions do not have to touch the ventricles - and so many don't.  

But the ones perpindicular to the ventricles are pretty easy for the neuros to spot and name.  Dr. Dawson saw the pattern one hundred years ago when he did autopsies on MS patients.  

My neuro says they are like plundering Vikings.  Some of the myelin munchers travel easily on our spinal fluid and when they come up the ventricles to the brain they lazily attack the nearest piece of real estate they can find  - they don't bother to wander far from the shore line.  Hence why we have so many lesions close to the ventricles.  I have my lesion pic of these posted if  you want an example.  

as always,
Lulu

[PatHC]

Thanks ST for the reply and the website this is a really good one I will set about studying tomorrow as its bedtime now in the UK.

Thanks Lulu your brain pics are much prettier than mine! I was surprised by this too but I did not have the knowledge to say any differently.

The large lesion I mentioned was on my MRI from 5 years ago with several smaller lesions - this was done on a very old mri machine - the new MRI was done on a 1.5T and shows more activity but we are still looking for more evidence!

Thanks again to both - seems I will just keep going now as I know what my problem is even if he can't make up his mind. lol

nite nite both
Pat
x

[Quixotic1]

Oh, Sheeesh!!  There is no requirement or expectation that the lesions must "touch" the ventricles!!  The term periventricular means near or around the ventricles.  He is out to lunch on that one.

The determination of "mild" MS should be made on the basis of the severity of symptoms and not the appearance of the MRI.  I think it is silly to use the term anyway.  I think it may be the new replacement for "benign."  This is NOT a mild disease and should never be predicted to remain "mild" in order to save money on meds.  I vehemently disagree with the NHS on this point.

Quix

[PatHC]

Thank you so much for answering - in that case even I could have dx myself given the amount of activity on my MRI 5 years ago the new one looks worse!!

The mild label is because until now I have managed to hide many of my sx (cognitive, dizziness, eyes, balance, tingling) and use coping strategies at work - 2 years ago the sx started getting much worse - colleagues have noticed and I cannot hide them as I cannnot manage a full day at work!

Not sure how to educate this guy - will just go for the spine MRI and another neuro exam as he suggests and if he is still hesitating just get a second opinion I suppose. He did admit though that the 'too old' label had been wrong but not for the reasons that we hope for but as my first onset of sx was ON at 35!

Thanks again to all I couldn't find that info anywhere else but her

Pat
x

[PatHC]

Oh and forgot to say that the 'mild MS' label as far as he is concerned is also a 'probable MS' dx!!  and he is 98% certain

[Quixotic1]

Have you considered a second opinion?  I think one is due.

Q

[PatHC]

Yes I have and I am working on the referral, in the UK it is difficult to find an MS  specialist as anyone with an MS Nurse attached can call themselves a specialist.

The current neuro thought that another neuro might first want a spine MRI and a full neurological exam - which he has not done yet - he only spent about 3 minutes on it during my NHS appt.

So once those results are in I shall move on.

Pat