Hurry up and wait...

[buriedinfur]

Well, we've all been there, eh? I saw the neuro a few weeks ago and he said that the MRI showed several ubo's but nothing that concerned him overly much cause they weren't in one area that he really looks for lesions if he's going to dx MS. The increasing issues I'm having DID worry him though because he said they were very MS like. So...lumbar puncture time - the 15th. So, really, I don't have long to wait. He says that he expects the results to be negative, but if they are positive that he's going to diagnose me with MS. I have an appointment with my regular doctor on the 29th and I'm going to ask that the test results go there (if they don't automatically already do so).

So, that's good. The problem for me (and increased frusteration) is that I started flaring last monday with a horrible bout of vertigo (had to crawl places in the morning cause the world was going to flip over) and since then it's been tough to walk and the fatigue is crazy again. My neuropathy and TN is acting up like mad as well, making me surly as the pain is really not nice. Right before Christmas, of course. LOL.

I hate going through these problems and having the permenant issues that are now sticking even when the flares are gone and not knowing what to do about it. I've been steadily going downhill this year way more than I have the past five. I'm using my cane (which I only bought this spring) frequently rather than rarely even when I don't have a flare. I'm facing the fact that I will not be able to walk all the way I need to be able to walk for a business trip in the spring (even with the cane) so now I'm looking into wheelchairs and scooters to rent.

So I'm proactive, and that's good. I've mainly got my depression under control. But I'm terrified and frusterated. As dumb as it sounds (less dumb to you guys) I want it to be MS so that they can do something about it. Having my mobility slowly sucked away and not knowing why is scary as heck.

So this is mainly a rant I guess. I've got my therapist so I can be proactive about my mood, I'm getting tested so I can't really do anything more until I get the results, I'm switching neuro's to someone who will be more compatible with my needs as a patient (ie not just call me bonkers, though this last appointment my current neuro was treating this as 'real' finally. What a victory that felt like).

Any suggestions on what to do about the heavy leg thing? After I walk for more than a couple of minutes I'm dragging my left leg around like it's 10 lbs heavier than it is. The weight just gets worse the longer I walk. I'm finding that I'm ending up confined in my house because i can't do anything without feeling like **** 20 minutes into it.

I'm on carbamazapine for the TN and neurotonin for the tingle/burn and imipramine for the mood/migraines.

[meg321]

You are not the only one who wants the diagnosis for MS, i am too tired to write much, but i just want something that I can deal with and maybe that can be helped a bit.  I am older so might not be much but at least i wont be treated as if I am just a nut case. Or maybe i will feel more like I belong.

good luck sweetie, meg

[Lulu54]

it is wonderful to hear that the neuro is reevaluating your status and leaning toward MS.  As crazy as that diagnosis wish sounds, I know all of us understand the desire to put a name on what's happening to our bodies.   You can't fight the battle until you know your enemy.  I trust he will be agressive with the DMD's once the diagnosis is made for you.  

That heavy leg is something I deal with - it frustrates me because it leaves me l;ike you - needing to sit.  I can work all day at my desk but walking down the hallway to get something wipes me out.  

I'm glad you're staying in touch with us - my best, Lulu