[slskckjebw]

Ok so I talked to the nurse today and she said the radiology report say no c-spine lesions but one brain lesion. So I had to send the 2007 MRI films to them so they can compare just to see if I have a lesion in a different area now.

Here is what my 2007 said.
"Abnormal right optic nerve demonstrating enhancement without mass lesion along its intraorbital segment. Imaging findings compatible with On. Additional note is made of a a small nonspecific area of increased signal associated enhancement in the right posterior frontal sub cortical white matter. this may represent a concomitant area of active inflammatory disease such as that may be seen with acute demyelination. Clinical and MRI follow up is suggested."

I was diagnosed by a different MS doctor based on the MRI above and clinical signs in my neuro exam.

On Friday my new MS doctor told me he thinks I am in the 5% of people with MS who have very few lesions. He said my neuro exams are positive for definite MS.

No c-spine lesions is a huge relief!! My MRI on Friday had a lesion in my brain but of course it is not in the "typical" place for an MS lesion.

This is crazy. The doctor said he would dx me even if the MRI showed nothing because of my neuro exam but I am still stressed! However my MRI in 2007 and MRI on Friday were not clean.
LA

[SallyC]

Don't be confused, LA, your MRI did show mild demylination, so you most likely have MS. Be thankful for a mild case, so far. I pray it stays that way forever..

Many Good Wishes.

[slskckjebw]

Hi Sally,
Thank you. The doctor told me he thinks I have PPMS because of the way I have progressed over the past two years without a relapse and remit. He said he feels I am one of those with very few lesions.

Then I found out today it is my brain rather than my spine. I wish they would make up their minds and stick to something.

Originally Posted by SallyC

Don't be confused, LA, your MRI did show mild demylination, so you most likely have MS. Be thankful for a mild case, so far. I pray it stays that way forever..

Many Good Wishes.

[hollym]

My lesions are also atypical. Mine are mostly subcortical, too. I do have more than one, though. I don't have an official count, the neuro just says "a bunch of them". My neuro says it is atypical MS, or CNS Demyelinating Disease, but won't go with an official dx or prescribe a DMD. He lets me have IVSM when I am not doing well and gets me the sx drugs I need.

One neuro suggested to me that this is PPMS because my lesions are smaller and in atypical places. He said that was more common in PPMS. It sounds like you have a very good neuro.

[slskckjebw]

Hi Holly thank you. I think I have a good neuro too. He does think it is PPMS. He is asking for all of my previous films to compare.

He did not dx me so he is trying to get up to speed on my situation. I know this MRI report does show progress and I have not even heard from the doctor yet.

My last MRI showed nothing in the periventricular area but this one does although the areas are not exactly MS shaped.

I have been on DMD's for about 18 months now. I have such pressure behind my eyes. When I started the
DMD that pressure went away. I was off DMD's for 2 months to change to another and that horrible eye pressure came back. So the DMD's are doing something for me.

Thank you for posting. Some of us are odd balls!

Originally Posted by hollym

My lesions are also atypical. Mine are mostly subcortical, too. I do have more than one, though. I don't have an official count, the neuro just says "a bunch of them". My neuro says it is atypical MS, or CNS Demyelinating Disease, but won't go with an official dx or prescribe a DMD. He lets me have IVSM when I am not doing well and gets me the sx drugs I need.

One neuro suggested to me that this is PPMS because my lesions are smaller and in atypical places. He said that was more common in PPMS. It sounds like you have a very good neuro.

[jowen214]

I was diagnosed with a clear MRI, 2 clear and separate relapses, and my spinal tap was positive. You're not the only "different" one!

Originally Posted by slskckjebw

Ok so I talked to the nurse today and she said the radiology report say no c-spine lesions but one brain lesion. So I had to send the 2007 MRI films to them so they can compare just to see if I have a lesion in a different area now.

Here is what my 2007 said.
"Abnormal right optic nerve demonstrating enhancement without mass lesion along its intraorbital segment. Imaging findings compatible with On. Additional note is made of a a small nonspecific area of increased signal associated enhancement in the right posterior frontal sub cortical white matter. this may represent a concomitant area of active inflammatory disease such as that may be seen with acute demyelination. Clinical and MRI follow up is suggested."

I was diagnosed by a different MS doctor based on the MRI above and clinical signs in my neuro exam.

On Friday my new MS doctor told me he thinks I am in the 5% of people with MS who have very few lesions. He said my neuro exams are positive for definite MS.

No c-spine lesions is a huge relief!! My MRI on Friday had a lesion in my brain but of course it is not in the "typical" place for an MS lesion.

This is crazy. The doctor said he would dx me even if the MRI showed nothing because of my neuro exam but I am still stressed! However my MRI in 2007 and MRI on Friday were not clean.
LA

[braingonebad]

Sls - I'm just glad you're neuro is competant enough to be able to dx you based on that - which really should be enough. After all, they used to have to do it without an MRI.



Now, I'd guess a doc like that will also be competant and confident enough to treat you well.



Most of the neuros I've seen don't even know what a tyipcal lesion is. Mine are oblong and in the periventricular region - around a dozen of them. 3 prior neuros said these were not typical - and none of them could even agree where they were or how many.

And they wonder why I'm confused?

And after my neuro exam, the current doc said 95% sure it was ms. But without all the other tests confirming, no dx.

Seems to me the more technology is available, the less they rely on having to actually know anything themselves.

[slskckjebw]

I am sorry you are having such a difficult time. I would be so frustrated and upset.

The ON and abnormal brain MRI is what weighed heavily in my diagnosis. On twice actually.

I am very lucky to have found this doctor. Actually my PCP recommended him.

I am in Indiana if there are any limboers in this state trying to find a decent neuro.

Originally Posted by braingonebad

Sls - I'm just glad you're neuro is competant enough to be able to dx you based on that - which really should be enough. After all, they used to have to do it without an MRI.



Now, I'd guess a doc like that will also be competant and confident enough to treat you well.



Most of the neuros I've seen don't even know what a tyipcal lesion is. Mine are oblong and in the periventricular region - around a dozen of them. 3 prior neuros said these were not typical - and none of them could even agree where they were or how many.

And they wonder why I'm confused?

And after my neuro exam, the current doc said 95% sure it was ms. But without all the other tests confirming, no dx.

Seems to me the more technology is available, the less they rely on having to actually know anything themselves.

[slskckjebw]

Is that a Pom in your picture? We have one. Three in all so far. My parents have them too.

Originally Posted by braingonebad

Sls - I'm just glad you're neuro is competant enough to be able to dx you based on that - which really should be enough. After all, they used to have to do it without an MRI.



Now, I'd guess a doc like that will also be competant and confident enough to treat you well.



Most of the neuros I've seen don't even know what a tyipcal lesion is. Mine are oblong and in the periventricular region - around a dozen of them. 3 prior neuros said these were not typical - and none of them could even agree where they were or how many.

And they wonder why I'm confused?

And after my neuro exam, the current doc said 95% sure it was ms. But without all the other tests confirming, no dx.

Seems to me the more technology is available, the less they rely on having to actually know anything themselves.

[braingonebad]

Originally Posted by slskckjebw

Is that a Pom in your picture? We have one. Three in all so far. My parents have them too.

Yes - that's Millie. She was my Christmas present, sort of. We adopted her a few days after xmas last year, just shy of 9 yrs at the time. Gosh I love that dog! We adopted her *sister* Holly just before xmas, and Mills needed a home.

Holly is also 9, but thin, blond, looks like a puppy. Really friendly. While Mills was 17 lbs, had just had surgery (6 in incision on shoulder, half her fur shaved off) and half her teeth had to be removed due to dental disease.

Also on her record, said she could not walk on leash, NO kids or other pets, will not groom or ride in car, etc, etc.

Looked awful, bad rep.

So the rescue could not find anyone who would take her, and hated separating from holly after all their lives together. Asked me if I could, ???possibly??? deal with 4 dogs???


I asked dh and how could he say no to that mug?

I told my mom "I got a fur coat for Christmas!" then showed her my dog. LOL. Actually, Millie is a very good girl for me - even nice to the little 3yr old kids that come over. Never had a problem with her.

Fur grew back, too.


I have another also, Ozzy, a black one. They are about addictive, aren't they? Can't have just one!

The fourth dog is a papillion - and I can walk them all at one time.