I'm curious who has been diagnosed with MS but has no lesions visable on the MRI? However have other symptoms?

Thanks

Hi Patch,

I have not had an "official" dx but my neuro feels I have MS. I have had numerous MRI's only one showed 2 small lesions on my neck which were discribed on the report as "aging lesions" and the next time it was done 6 months later they were gone. One LP, which was clear also.

With my sx (changing daily now), 3rd flare and round of Steroids since April my Neuro is fully convinced MS.

so, to answer your question - No I haven't had an "official" dx but yes I have been told it is MS by two different Neuro's.

http://www.mult-sclerosis.org/DiagnosticCriteria.html

Just an FYI on how the diagnostic procedure is supposed to work for diagnosing MS.

Thanks for the info. One more question have any of you noticed when sleeping your awaken by a twitch in your body. LIke I would be sound asleep and my body jumps, its really wierd. Almost like having a bad dream but I don't feel that I am.

5% of people with MS have no lesions. Go to the National MS Society's main page and search MRI...

Take care.

Actually, that happens to me alot, almost like my body has some how lost it's balance even though I'm asleep. Hard to put into words, but I do know what you mean!

http://www.nationalmssociety.org/abo...-ms/index.aspx

Here's the link to the reference.

And make that 5% as "initially" don't have lesions. The reference goes on to say that the longer someone goes without lesions the more important it is to rule out other stuff.

It is possible to get an MS diagnosis without lesions. And the McDonald criteria are only applicable in countries where the technology exists--so it is possible. Most of us live in countries where the technology to meet the McDonald Criteria exists. Don't know if that's good or bad but it IS frustrating at times.

And then there are the ones (like me) where radiologists never see lesions and neurologists can't agree on WHAT they see in my brain. One neuro saw nothing, his partner looked at the same MRI and saw two lesions, another neuro looked and said that MRI was crap and that a later MRI was good and that he saw no lesions (but saw two lesions he felt were artifact), another neuro from the same hospital group saw one lesion where my first neuro saw none and the second neuro saw two, and I'm now going to go see yet another neuro and am waiting to see who he agrees with: none, one, or two (or just artifact). Oh.... and while it sounds like a lot of neuros, neuro 2 left the practice, neuro 3 turned out to be a "consult" and not a treating neuro, neuro 4 got recruited away from that practice. There was an interim neuro who didn't see any lesions (but that was before the MRI where the partner of my 1st neuro saw lesions). So no...... I'm not doctor shopping--just trying to find a neuro who stays in his/her practice!

Anyway, good luck! It's a frustrating disease and frustrating to get it nailed down.

Wow! I thought I was the only one going through all of this. I'm sorry that your going through the same frustration as I am. Are you working? Are you on any medication yet? How do you cope with all of this? There are days where I'm o.k and then there are days like today that I slept twice in one day.

I've been going through this since 2003. Got dx'd in 2005 and then this year in January the neuro who saw the "artifact" lesions (oh in the corpus callosum--go figure) on my brain said I only had transverse myelitis. Then the next neuro (who got recruited away) saw one of the same lesions on my 2005 MRI that the neuro who dx'd me (both MS specialists) but didn't see the other and then said that I had clinically isolated syndrome. Hmmm....... As I said, I'm waiting for the next neuro (December visit) to see who he agrees with--if anyone.

Basically, you just keep plugging away and hoping to get answers. And see an MS specialist if you're not seeing one already. It helps to have someone really familiar with the disease tell you if they think you don't have it or if you have "possible/probable" MS. Unfortunately, it's a diagnosis by default--there's no definitive test for it.

I'm at the point where I can laugh about it but it still gets to me sometimes. And I've decided that I"m sticking with the MS dx until I see what the next neuro says. NO sense giving away the two lesion dx and one of those lesion confirmations--especially since the two lesion neuro saw them in the corpus calosum--which is ironic since Dr. Transverse Myelitis Only saw his "artifactual" lesions there too.

Yes, I'm working--full-time, but I have a relatively sedentary job, which is good. Fatigue's my worst problem in addition to some sensory symptoms. I was taking Copaxone and got sick of sticking myself every day. So I took a medication break for about a month or so in late 2006. Then I went back on it and stopped again when I saw Dr. Transverse Myelitis Only. I'll go back on it again depending on what Dr. December Neuro says.

I'm taking Baclofen prn for muscle spasms in my legs--it helps my restless legs too. But that, too, is going to depend on what Dr. December Neuro says as well. I don't have an iron problem, which can cause restless legs.

OH I hear you with the ups and downs of how you feel. That's normal. You get used to it after a while. And it gets me really angry at life for giving me this occasionally or really down--so I'll allow myself a pity party for a day or so and then snap out of it and go on with my life. You can't wallow in it or it'll eat you alive. And I'd rather live than wallow.

You learn to listen to your body, too. I have a lot of times where I think I can do more than I should and then I pay for it. But I guess I'd rather do that than not try and know my limits. For instance, I went hiking this weekend on Saturday and was pretty much a couch potato today and Sunday, although I did laundry and mowed my grass today.

One day at a time. That's how you take this fun process. It's like living life on a roller coaster. One minute you're up and the next you're down and you don't know what's coming because you're riding it blindfolded.

Hang in there. You're not alone! There are LOTS of people here who can identify with the frustration and ups and downs of it all.