confused and feeling foolish

[Tess516]

Hello Everyone,
I was diagnosed in October 2003. Since that time I feel my disease has progressed. I've had two big attacks within the last two years. Received solumedrol infusion and recovered mostly. But not completely.

What confuses me is that according to my nuero My mri's haven't changed since day 1. Which he tells me my MS has not progressed.

Is it really possible that I could have a flare-up with new symptoms and not show any progression on MRI? I feel like my nuero must be thinking I'm imagining these symptoms. Or I'm blaming everything I have on MS. I never get to see my mri's I just go by what he tells me.

He is a Parkinson's disease specialist. But still regardedy as a very good neuro. Should I go to the MS Clinic and see a MS specialist instead? I just recently learned we have one about 45 min away. I hate changing doctors. But maybe this one isn't working in my best interest. Hey I've got to say something to perk up my spirits! Otherwise I feel like I'm losing it! LOL

Hope to hear your thoughts. and Yes this is my very first post ever!
Thanks
Judy

[SNOOPY]

Hi Tess516 and welcome to MSWorld,


MS is typically a progressive disease. Some have very little progression, some have a lot and some fall somewhere in between. Progression usually means more and more symptoms that do not go away and resulting in more disabilities.

Having relapses is not necessarily indicative of progression.

An exacerbation (attack, flare-up, relapse) can resolve completely (no symptoms) or partially (residual symptoms/symptoms come and go). Both is normal with partial being the most common.

It is possible to have symptoms and exacerbations without MRI changes.

[Jules A]

Hi Judy and welcome.

MRIs are only a piece of the puzzle. It is not uncommon for MRIs to remain stable but progression to continue. I'm a fan of seeing a MS specialist as a second opinion and possible treatment suggestions but have found although I prefer them over a regular neuro even our MS specialists have few answers.

[rdmc]

Hi Judy,

Here's a couple links you might enjoy. I've posted them many times before, but I repost them when someone has a question like yours.

One is from Marc, the blogger at Wheelchair Kamikaze...he discusses how his MRIs have never changed, and yet his disease progresses (this article was written about 4 years ago, yet his MRI still only shows the one lesion and his disabiiity increases.)

http://www.wheelchairkamikaze.com/20...rosis-and.html

The other shows how an MRI is just a snapshot in time. It shows a series of MRIs (24 MRIs during one year) that were time lapsed. Interestingly enough the man had no exacerbations and reported no increase in symptoms, but as you'll see...lots of things were going on in his brain.

http://www.msdiscovery.org/news/news...more-meets-eye

[JerryD]

Judy,
I prefer to be treated by the specialist. I feel much more confidence in the treatment and knowledge of a neurologist who treats a hundred cases of MS. A general neurologist may see a hundred cases of MS in the lifetime of his practice. Good luck

[MSW1963]

My own MRIs were stable for +10yrs., but I have been dx with more progression based on my sx and clinical exams performed by my MS specialist.

Based on research?, some MS'ers with 'stable MRIs' do continue to experience MS progression despite long periods of stability based on MRI films. No changes on MRIs, meaning no new areas of MS damage and no new enhanced lesions=no active inflammation on MRIs.

MS doc's are typically satisfied/relieved when there are no changes on MRIs, but that does not always correlate with progression experienced by patients particularly when progression is evident on clinical exam.

I agree MS Specialist don't have all the answers, but my experience is most MS specialist are more aware of the complexities of MS, and more aware of the next MS questions that need to be asked/answered and current research. MOO.

[allHailye2]

i have had an exacerbation with new symptoms without new lesions or active ones.

[pennstater]

Like others have said, I have had stable MRIs, but have had relapses, as well as progression independent of a relapse. I have a general neuro as well, but hr did say that MS has to be evaluated based on patient, not just MRIs..

If I understood him, the feel MRIs are not sensitive enough to show all changes and that they do believe that some lesions may disappear.

I would consult a specialist since your neuro seems to be limiting your treatment discussion based on MRI.

Good luck.

[Tess516]

Thank you!

Thank you all for your replies.

They have comforted me and given me knowledge. I no longer feel so confused and so foolish.
My nuero is a wonderful doctor but I now know that I should be seeing a MS specialist. My nuero found very concerning evidence of MS progression while I was in his office. But when the MRI came back with no changes and stable He referred back to 'no progression' continue with meds as before see you in 6 mos. Hello?!

Thank you again!
I love this website!

Judy