Have they ever attempted to explain why it is that you get new lesions, but they are never enhanced when you have a MRI?

Cherie

I have had them enhance before. The second MRI I had when I was dx'd I had 3 lesions enhance. Neuro did an LP, confirmed the dx and confirmed the flair. I started IVSM and joined this exclusive club!

I am not having an exacerbation now.

Oh, ok. I thought you didn't normally get enhancing lesions, and that's why Tysabri wasn't recommended for you?

Cherie

Just that one time. Not since.

Just the one time you had enhancing lesions?

That's why I was asking if they've ever explained that to you, since you went through periods of relapses every 3 months, like me. If "inflammation"/enhancement is an indication of activity/relapses (or so they say, when evaluating our drug options), then why would we be having so many relapses without them showing on a MRI?

Then the non-enhancing (more permanent) ones show up suddenly . . .

You are an anomaly, so I find it interesting . . .

If you are not in a relapse now, might that indicate that your sudden arm damage is not connected to MS then? (Unless you have a new non-enhancing lesion in that area of the brainstem/spinal cord . . . which it doesn't seem you do . . .?).

Cherie

Absolutely!

That's what we are looking for. But the new lesions are in the PAIN area. I still have the EMG yet to be done so until all the tests are in, I am not venturing a guess as to what the problem is. At this point, I am happy to have the pain at a point that is tolerable. And limited use of my right arm! Baby steps.

Well, I suppose that if you continue to relapse, and even if that isn't apparent by your MRI's, Tysabri might still be an option for you.

You could try LDN too . . .

And of course there are a lot of new drugs in the pipeline, so hopefully one will be available soon.

Maybe this cortisone shot will be your ticket for your immediate problem. Sure hope so . . .

Cherie

I saw the ortho doc again today. Still in a lot of pain. I got some relief from the steroid injections (one in my neck last week and one in my shoulder on Dec 30th) but it ain't over yet.

I have an EMG scheduled for Thursday.

Ortho doc says I can probably have another steroid shot in my shoulder in two weeks.

Until we get the results of the EMG, not much else can be done til then.

He said if it doesn't show anything and the steroid shot doesn't help, then I am looking at some type of surgery. Great.

My neuro is concerned about the brain MRI. I picked up the scans on disk for her today and should have something back from her soon.

Why can't anything with me ever be simple?!?

You are special like Jim Cheryl. At least that's what his doctors say! lol

When Jim was having pain in his torso they did a MRI to see if a lesion was in that area. They didn't find anything so it was ruled out the "ms hug" by the neuro. It went away on it's own. I have to tell you that they also said if there were lesions in that area there was nothing they could do anyway. The MRI was just to confirm if a lesion was responsible.

Anyway, Jim has lesions in his brain but they are not lit up. That's awesome news to us. The neuro said they are lesions that are non-active. I hope yours are the same. From what I have always understood, developing lesions is not good but it's worse if they are lit up like a light bulb.

Lesions are not responsible for this pain. That we know. I love solving puzzles but I think this ortho doc is getting a little frustrated but I do like him.

The two different surgeries he mentioned don't sound like a walk in the park, tho.

Subacromial decompression surgery or biceps tenodesis

They both sound horrid! He did tell me to take the pain meds and stop pushing myself! Me??? Huh? Looking around the room thinking maybe there was someone else there! Nope.

I have started wearing the sling again so I won't use my arm...IT HURTS!!

I am getting ahead of myself. Must wait for EMG results.