Got evoked potential results back

[biowham]

Not from my doctor, but in the mail, with the envelope I filled out when I was there.

All normal.

That leaves me with...not much in the way of "objective" evidence of anything. Some spots on my brain. "Focal insult"/myelopathy on my tspine. Hoffman's, EMG showing upper motor neuron lesions, jaw jerk, hyperreflexia. Those are the things over which I and my doctor don't have much objective control. Clear LPs. Clear EPs. Right-sided weakness. Dx of "cervical myelopathy possibly because of MS." That's where I am.

I was supposed to at least hear from my neuro about pain and fatigue meds. That hasn't happened, and it's been 2+ weeks. Yes, I'll call. Eventually. The pain is distracting sometimes, but other times totally tolerable. The fatigue--well, it's a problem.

My current plan is to now wait a year, see what's going on. I've progressed, slowly but surely, over the 2 years that this has been going on. I'll see where I am next October and mark it against where I am now. Will it be better? Plateau? Worse? If this last, then I guess I'll follow up on it more.

Bio

[Nancy T]

Rationality and patience or no, it's gotta be very frustrating. Did the latest neuro ever give you a final opinion, or are you supposed to see him again?

[Fluffysmom]

ah, "God give us grace, to accept with serenity the things that cannot be changed, courage to change the things that should be changed, and the wisdom to distinguish the one from the other."

OK, I had to look him up,   :o)

K

[Lulu54]

I hate that so many of you are living through not having answers.  If only this were simple ...  if only life were simple.  

my best, L

[biowham]

Lu, no, I don't want a dx of something I do not have because I have gotten several of those, and it's irritating, to say the least. But my options here with the undeniable upper motor neuron signs are (a) dunno, (b) PPMS, or (c) primary lateral sclerosis. I've ruled out PLS repeatedly in my mind because I have Lhermitte's and paresthesias (always in the same places), and PLS is a *motor* disease; however, I also have to admit that I do not have detectable sensory signs like numbness along a dermatome, etc., so my greatest manifestations are motor problems.

Kathy, not that kind of numbness, either. I'm a big fan of rationality and of Reinhold Niebuhr, which has always been a winning combination for me. Also, as I get older, I learn more and more about patience.

Thanks for your comments. As much as I'd like some definitive clinical evidence that rules IN or OUT (I mean besides spots on my brain and spine), you can't always get what you want. As we all know, there's not anything that's an unequivocal rule OUT here, so the possibility just sits there.

Bio

[Fluffysmom]

I wish you had gotten some answers.  I admire your calm acceptance and plan for the future.  Am I projecting, or do I sense a kind of numbness that comes with another test result that unbelievably shows nothing?  I feel for you, either way.

I hope that your neurologist does contact you.

Do call about the medication for the fatigue, and pain (that stuff can wear on a person).  My pricey Provigil is helpful, and my Lyrica helps with nerve pain, and Tegretol really helps when its really bad, like TN.

Kathy

[Lulu54]

Bio - it sure would be nice if you had some answers, but you also know you don't want the dx of MS unless you really do have this disease.

I trust you will hear from your doctor eventually about these results and a plan of treatment for the fatigue while you wait the next year....

be well,
Lulu

[biowham]

Sorry...meant that I and my doctor don't have "subjective" control over those things.

Bio