MS Diagnosis

freeinhou · 10-14-2008, 12:50 PM

I was told I had MS in 1988 - without an MRI. I spent 16 months on a waiting list for an MRI. The 1989 MRI showed 3 lesions.

My 1994 MRI had only 1 lesion. My 1993 MRI showed 4 lesions. My 2003 MRI showed dozens of lesions. I got a stack of MRI films...

Lesions come, go, swim around, grow, shrink, fade away, disappear, etc. I got tired of trying to predict the course of my MS based on lesions. It is not possible.

There is a school of thought that the body may go through a re-myelination process on its own accord. I believe it.

Tom

patch · 10-14-2008, 08:35 PM

Quote:

Originally Posted by Gazelle

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.

Thanks for the encouragment. I have been dealing with this since 2004 and now with this 6th nerve palsy, foot drop, numbness, and all these mood swings it gets agrivating. But I refuse to let eat me up like you said. Take one day at a time.

thanks again.

lady_express_44 · 10-14-2008, 09:32 PM

Quote:

Originally Posted by Gazelle

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.

The McDonald criteria does not even require confirmation with a MRI or spinal tap, although most neuro's would lead you to believe otherwise.

According to the revised 2005 McDonald criteria , all a MS diagnosis really requires is "objective evidence of lesions disseminated in time and space”.

The very simplest evidence of that would be a doctor witnessing two attacks, with a 30 - 90 day break (dissemination in time), affecting two different areas of the CNS, ie. spinal cord one time, ON the next (dissemination in space).

Using myself as an example, a MRI and/or spinal tap was not necessary for the dx as I had “clinical evidence” of two attacks, and of having two lesions. The way they assessed that (without doing a MRI) was by my doctors witnessing two attacks over separate years (proof of dissemination in time) combined with clear evidence that I was affected in two different ways; once from the chest down, the other time from the ears down (proof of dissemination in space).

HOWEVER, accumulation of that “clinical evidence” can take many years, so if I/they had wanted to pursue a dx earlier, they would have had to add in the use of a MRI (and/or spinal tap) to try to prove “visual” evidence of lesions (or positive CSF/O-bands).

In the table below, “Clinical lesions” (WITHOUT the use of a MRI) are defined as evidence/witness of multiple lesion involvement (two areas of the CNS affected). Where there are less then two clear attacks, and/or less then two areas of the CNS involved, they then move onto the additional “requirements for diagnosis of MS”.

It’s when they have to move onto “additional requirements” that things get complicated. For example, if a person has two attacks, but is affected the same way in each one (no dissemination in space), they will usually do a MRI. At least 3 out of 4 of the Barkhof criteria need to be present to fullfill the MRI criteria for MS, as per the the table below:

If that doesn’t give them what they need, sometimes they will do a spinal tap to see if we have a “positive” CFS (usually defined as two or more O-bands).

When a patients presents with only one symptom that could be a first presentation of MS (possible MS), sometimes a follow up MR is needed to prove that there is also dissemination in time in order to fullfill the McDonald criteria.

The table on the below summarizes the MR criteria for dissemination in time. Another way to prove dissemination in time is to await a second clinical attack.

http://www.radiologyassistant.nl/en/4556dea65db62

Relying mostly on a MRI isn't such a good idea anyway:

http://www.medpagetoday.com/Neurolog...erosis/dh/2929

Cherie

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