Finally picked up the MRI report from August

[lusciousleaves]

Here's what it says:

There are a few scattered foci of T2 prolongation in the periventricular, deep and subcortical white matter. Most prominent foci are visualized in the frontal and parietal periventricular white matter. Several of these lesions are aligned perpendicular to the callososeptal interface. While the findings are nonspecific in appearance, the pattern and orientation is suggestive of a demyelinating process. Correlation is advised.

Neuro tells me there are too many changes in too short of a time frame to be accounted for by migraines. Next time I see him he wants to talk about starting something to try to prevent the flareups rather than just treating them with steroids when they happen. LP is next week and the week after the rest of the blood work will be done. After that we meet to go over everything.

[minnie76]

Hi,

Sounds like you may be getting closer to an answer!

Good luck with the LP!

Let us know, and all the best

Minnie76

[Seasha]

Good luck lusciousleaves! Keep us informed

[lusciousleaves]

Getting closer. I don't want MS, but if that's what this is, I'd really like to get moving forward with trying to slow it down. There have been far too many flareups this last three years. I may have gone 9 months last year without one, but the rest of the time it seems like they've been coming back to back. It's disconcerting, especially when nobody cares to ask or hear that your headache triggers and these flareups and other symptom triggers are completely different. If you tell them, it goes in one ear and out the other.

Just a little note to anyone going through this migraine confusion like I have, when you finally start getting a different picture coming together, be careful which docs you share that with. I've found that one involved in watching this from the beginning has gone into CYA mode (who was slightly weighted toward something more than migraines and investigating accordingly) and is now sending out reports insisting on migraines as part of it because there's enough evidence to dx without that part of it, or so she claims.

Again, this one has never asked much about my headache history, at all. None of them have. None of them. What if her part is needed to make a dx? Needless to say, it's not over yet, and that last report she sent out could change the outcome.

My plan is to get a piece of paper, draw line down the middle, one side labeled neuro symptom and flareup triggers, the other labeled headache triggers. I'm not convinced the headaches aren't a symptom of something more and not the cause of it all. Two of the docs insist the 'migraines' are the cause of it all. I truly don't have that many headaches that could be categorized as migraines. In my entire lifetime, I've only had one classic migraine and that was this past spring. It lasted one day. The migraines are under control. But nobody asks me about that. Why? These complex migraines, or familial hemiplegic migraines DO NOT run in my family. As far as I'm aware, those are highly heritable.

And here's the other wild card: our insurance is being dropped by the company my husband works for and we're going to be forced into a new plan. I won't know for another couple of weeks what these new plans look like (if there is more than one option), but judging by what the sole remaining insurance company has historically offered (and why we avoided using it), it's not a comforting thought either. It's a crappy HMO that offers no out-of-network coverage at all. What next?

[aspen]

My first two neuros were adamant about me having an atypical headache/migraine diagnosis. I would point out that i don't actually get headaches or migraines -- oh, but they are silent. Shouldn't auras come BEFORE the headache? Well, that's why they are atypical. Bladder trouble is an aura? No, but you may have a UTI. I was just checked for one -- no infection.

At which point he got upset with me because it looked like I was shopping for ms. Really? I WANT ms? Ummmm ... not so much. But I do want neuros who don't keep hanging on to whatever their pet dx is like a dog with a bone.

It took an ER doc to write up a report and send it to one of the neuros to finally open his mind a tiny little bit -- enough to refer me to an ms specialist instead of the headache guy. I would like to know what the report said. I was taken to the ER with stroke-like symptoms (although I knew at this point it wasn't a stroke); ER doc asks me if anyone has talked to me about ms and I replied that it has been ruled out. He replied, "Nope, it's far too early to rule out ms." I was upset he referred me back to the same neuro, but I guess he wanted him to see the report.

Saw the neuro again, who continued on about my atypical headaches and that he had referred me to a very good headache neuro. I asked him if he'd read the ER report; he hadn't. He did then. Just before I left, I very clearly asked, "Are you absolutely positive that the referral you have made for me is the right referral?" He thought a bit, then changed it to an ms clinic referral.

And I understand about who you share things with. I did the same thing, and neuro no. 2 totally defended neuro no. 1's dx of headache/migraine.

So sorry about insurance hassles. I lived in the US for a few years, and dealt with the whole out-of-network thing constantly. We lived in an area with three good hospitals, and at one point none of them were covered and we had to drive to the next state .

[lusciousleaves]

Dog with a bone is the perfect metaphor. Anything that falls outside of that pet category is simply dismissed. In this case, there is plenty falling outside getting dismissed. The only thing in my favor is the neuro doing the workup is our local migraine expert. He insists this isn't migraines. Surely, that counts for something.

Funny thing, this last doc I saw asked for the neuro's name and had her assistant hand me her half finished report insisting on some of the visual issues being related to migraines. Every other time I was there, I had to ask her to send reports and never received a copy of anything.

I could care less about ego or lawsuits. What I want is to get to the bottom of this and stop or slow it down if at all possible. I have a life to live and heavy responsibilities to deal with, thank you very much. Without me, my special needs kid ends up with even more strikes against him in life than he deserves. These people need to knock it off and get this moving in the right direction. The stress all of this is adding to the mix isn't helping anyone.

[lusciousleaves]

I think I may have jumped the gun hoping for answers. After reviewing more information, it doesn't appear the MRI meets the McDonald criteria. Also, the cell counts that have come back on the LP are mostly normal. Waiting for the rest of the results. They have been sent out, so it will be some time yet for the rest.