How do you tell

[kimpton]

Is there a feeling that you have when you're actively demyelinating.  The neuro said that's the best time to get tested.  I have wacky neuro stuff all the time.  I recently started having white flashes that I thought was retinal issues, but turns out it could be Tri N, which I know I have on one side and might have on both.  The neuro stuff seems to come in clusters, but never really lasts very long.    Just thought I'd ask.  

[Quixotic1]

Hi, Welcome to the forum.  I don't think I've seen you here before.  Are you diagnosed with MS or is the neurologist still trying to understand what is happening to you?  If you'd like, why don't you tell us your story?  I see you've posted quite a bit on the Neurology and the Fibro board, so you do have stuff going on.

As far as your questions, I see a couple and I have some questions myself - for you, of course.

In the context of MS, when you are having a relapse you would know it by the sudden appearance of new symptoms, the sudden worsening of old symptoms or the reappearance of symptoms that had been gone for a while.  We have a Health Page which gives the definitions of relapses (stages of active demyelination) and remissions:

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/Relapses--Pseudo-Relapses-and-Remissions/show/372?cid=36

Is it best to wait for testing for MS for when the patient is having a relapse.   Not really.  Most of the evidence that a person has MS will appear whether or not the person is having an acute relapse - or actively demyelinating.  The only piece of evidence that you will catch only during the early part of a relapse is finding an "enhancing lesion" on the MRI.  This is a lesion that lights up with the contrast agent because of new immune inflammatory activity.  In reality most of us with MS don't usually have such enhancing lesions.

What is Tri N?

When you say the neuro stuff comes in clusters, but doesn't last long - how long does it last?  To qualify for being a relapse, it needs to last at least 24 hours, but in reality usually lasts longer than that.

Welcome again,

Quix

[jensequitur]

It sounds to me like Tri N is trigeminal neuralgia...  One of them $20 words, I reckon!

As for feeling like you're actively demyelinating...  I essentially use the criteria that Quix mentioned - new or recurring symptoms that have stuck around for 24 hours.  However, I also have a lot of fatigue when that's going on, and I hear that fatigue is a sign that your brain is dealing with something - like a relapse or demyelination.

[kimpton]

Hi there.

Thank you for the link.  I'll have to think about all of that.  I guess my question is how long does it take for your nerves to remyelinate?

Tri N is Trigeminal Neuralgia.  I know I have it on one side, but it seems as if that sides has calmed down and the other is fired up.   My dr. asked me to start keep a log.  I do have b12 issues and am working on a correct dx.  It seems like the shots may be masking something else.  

I had a major episode a year ago.  My spine MRI was fine, but I didn't do the brain.  & I had a blood test that shows MBP in the blood and the Neuro said that meant I had a break in the BBB/CNS for whatever that's worth.  But my symptoms come in clusters.   It's just more irritating than anything. & yes I do feel fatigue.  Sometimes I'll have stabbing focal point pain.  I used to jerk with it, but think that's just the element of surprise.  I've never had anything that feels like a stroke.  The weakness in my leg I think is from an old injury.  

I'll keep a log of anything that lasts longer than 24 hours.  

Thanks for the post

[jensequitur]

I get stabbing pains that cause my leg to jerk, or a muslce in proximity.  I was diagnosed in 2007, so keep that in mind!