[braingonebad]

Good morning fellow limbolanders! I hope to see anyone who's in limbo whether you usually check in or not - please, come on in!


Took me a while to get out of bed and get to this today. Why I'm so stiff I dunno - not like I did anything yesterday.



There have been asome new folks lately, so I'll tell you a bit about me - I did an intro but that is way burried by now. I started with migraines about 10 yrs ago. They did a CT - normal - then an MRI/MRA. The MRA showed normal vascular structures, the MRI showed around a dozen brain lesions in the periventricar region, about 3mm.

After that, I had 3 lymes tests - all neg. Lupus ruled out. Dx'd with Reynaud's and livedo reticularis. Some other blood work for Factor II - I'm borderline. More bloodwork - Vitamin levels all good, cholesterol way high, started lipitor.

Started having hip pain, shocks in my R leg - though it was a lipitor side effect.

At this point, that pain, the migraines, fatigue were my only sx and so when they were saying they thought I had ms, I really didn't believe them. Didn't seem to fit, in my mind.

Then a lot of other weird sx started, I had a lot of other tests - EEG normal, VER and BAER normal, C spine MRI showed all kinds of problems. Aha, I thought that was the answer. Then the T spine MRI showed a syrinx and that really explained a lot of sx. I thought I was finished testing.

But my docs didn't agree. My neuro did not think SM could cause any of my sx, or that my C spine was all that big a problem - the NS thought it was really serious, so I was confused - I didn't trust either of them.

I guess that's what limbo is. I know some of what's wrong with me. But I do not have all the answers. Some of my sx are not from my neck or my spinal cyst, neither of which cause brain lesions.

I live with pain, fatigue and crazy bouts of vertigo, weird sx (water dripping on me, bee stings) and lost my job right out of the gate to the migraines. And let's not even talk about cog fog.


So yep, it's been almost 5.5 yrs since they told me I might have ms till now. Do not be discouraged by that, and think that that happens to everyone. It doesn't. It can, but that is not always the way it goes.

The reason (I think) people should know it can take 5 or 10 yrs to be dx'd is this; even if it takes that long, you will make it.

At least now, we have the support, here. I don't know what I would have done all this time if not for my friends online. Please reach out, ask, learn, vent, let us be there.

These are some of the best people on the planet, of that I am sure.



All the best to you, my limbo tribe,
Cathy/Brain