I Know what I don't know

[johnniebear1918]

I Know what I don't know,  need your input  from these tests.  Could anyone have any thoughts?
I’ve read this board for a few months,  I feel blessed to have found it.   I had a MRI done because of bad headache.  So here’s my story, I welcome your input Please…
Guess I’m in limbo like many others just waiting for the hammer to hit me one day.


50 year old white male.
Good blood pressure
No major symptoms  that I have noticed, other than , right hand dropping items sometimes, and slight balance

Here’s my questions
1) I was told if the second lesion grows it must be removed, that doesn’t sound like me M.S.   Right?
2) Do they always report the size of the lesion?
3) I just have very small balance problems, and right hand I’ll some times drop things.
4) Do you have to have symptoms to have M.S. ?
5) How many lesions can you have without any problems or does size & location matter?


First Dr that ordered the test said, its just part of getting older, don’t worry about it, well I fired that a Dr. this new Dr has ordered more MRI’S  & all the other tests.


I have two lesions
One Band noted from the LP test

Brain stem response,
Abnormal conduction following right ear stimulation with only wave V being discernible (two trials)
Left ear stimulation waves 1 thru V are blunted

Visual Evoked Responses, abnormal prolongation of P100 following the left eye
All blood work is normal & B-12

Visual Field tests are normal

MRI 3 total  w/wo contrast   to date,  fourth is scheduled for May 2010

MRI  (1) May 2009
There is a T2 hyperintense lesion in the left pericallosal white matter of the left frontal lobe with subtle enhancement on the postcontrast sequences

MRI  (2)  
August 2009  
Since the last MRI there has been interval development of and approximately 7mm x 5 mm focus of increased T2/flair weighted signal within the subcortical white matter to cortical region of the posteromedia left parietal lobe, reminder of the  study shows left & right have  a small periventrical increase, with the left side focus again having some minimal enhancement with an additional tiny focus of increased signal intensity redemonstrated in the right  frontal white matter




MRI (3) Nov 2009
No new foci of abnormal signal intensity is seen in the pervientricular and subcortical white matter bilaterally , small areas of abnormal signal intensity are again seen.

So now I wait to see the Nero again in May, maybe to get a DX after the next scheduled MRI

[johnniebear1918]

thanks to all that have make comments,  in my post above I meant, any day that my feet hit the ground is a good and can take care of myself.

I'm a self employed contractor, so working isn't an issue at this point.  We want to hold off until we have more info to share with family-  we still have so many questions- so we know the family would have many more.

I also get stuck on a work sometimes- or like watching the football game today I know the teams playing and see the names- but called out different team names, some times I think think thats just AGE!!

Take care Mike.

[Mike_Shuswap]

Hi JB, welcome to limbo land. I'm not sure if I can be of any help to you, but here's my 2 cents worth.

#1  nope. they don't remove MS lesions, however, they might remove other things like tumors (don't let me scare you here, I said tumors, they didn't) In my case my largest lesion is shaped like a tumor (whatever that means), they said they couldn't remove it because it's in the middle of my brain, but they did biopsy it and determined is not a tumor.

#2  for me they only report the size of larger ones  (so far after 3 MRI's)

#3  not sure what the question is, but I have balance issues too. Quite bad at first (last Feb) but it got better. Now it comes and goes to varying degrees

#4  you can be dx'd with MS without symptoms, so I've read on these types of sights

#5  there is apparently no correlation between the size and location of lesions and the symptoms, so I've read. I have also read that lesions on the frontal lobe cause cognative issues, and my 1st neuro said some of my lesions are in the right place to cause memory and speach problems I experience

I guess we're all getting older, I'm 53, but that shouldn't mean we have to accept a deteriation of our health and enjoyment of the years to come. Good for you for firring your 1st doctor, was he/she a neuro or your family doctor?

Are you having any work related difficulties?

You say you haven't told anyone. I hope you're not embarassed by what's happening to you. I've been open about my issues with friends, family, and work, and for me it's been great having all their support. (I had to tell work, I'm on LTD for now, hope to return to work ASAP)

I know you'll get a lot out of this group, sometimes just a little support from people in the same boat is all you need to keep from going over the deep end.

My next neuro appt is also in May, so maybe we'l both know more by then.

All the best to you, and to your wife, it's just as hard on our spouses I think.

    Mike

[johnniebear1918]

Never passed out from headaches.

I do have chronic Achilles Tendonitis in both ankles,  don't know if that's related in any way to M.S.
P.T.   hasn't helped me for that,  so I had PRP injection to try to help.

Here's the link for that
http://www.nyfootandankle.com/prp/?gclid=COjttPqmvZ8CFQUMDQod3Skt3Q

Let  me say that any day my feet can hit the ground and can take of myself is great day, My wife and I haven't told anyone.

[StormyRenee]

Hello & Welcome!

Sorry that you are going through all this....

First I have to say that it seems that you have been luckier than most of us on here because your doctor seems to be taking your symptoms seriously.So many of us on here have to go from doctor to doctor until we find one that actually does the needed tests.
As far as the lesions go...I am answering these question by my own personal experience...
Doctors do not remove lesions caused by MS.
Sometimes the size is reported others it is not.
Unfortunatly you can have  MS symptoms and no lesions or vice versa.
Some doctors try to find a correlation between symptoms and  the location of lesions. But some doctors dont.

I know that my answers seem vague but unfortunatly things seem to vary by doctor.

The abnormal Evoked Respones could be caused by so many things other than MS.
You have had alot of MRI's in a vary short period of time.Your doctor really seems ontop of things....

I personally am riding the MS rollercoaster. I have 15 whitematter foci.I also suffer from migraine varients.I am awaiting my LP results.
I know how confusing and scary this can all be.

Please Take Care, Theresa

[silkcut]

Hi johnnie B

Sorry that you're limboing too. It's quite concerning when you have to wait and wait for answers.

Uh...I'm not one of the best people to comment about MRI interpretations - like you, I often feel that I don't know what I don;'t know.

If I may, a couple of comments though...I'm surprised that you got MRIs, VEPs, brain stem exams, an LP etc as a result of a (one?) bad headache and a couple of symptoms that we neuro patients are usually told are nothing.

So, I wonder if you passed out from that headache or whether there were other signs that the docs noted that they aren't telling you? Are they even hinting at MS or something else?

Something that I've done, with varying success, is to write the doc with my questions. I've found that good docs are quick to answer, even if they don't know they'll get back to you.

I hope you get the best answers - keep us posted!
bestest
sam

[illinwithoutacause]

welcome to our little world, here.  i am not one of the best folks to communicate with about your particular test questions, but there are some amazingly learned people here who will certainly be able to provide you with some advice and unconditional support.

best wishes,
binx