hi - I've posted a couple of times over the past 6 months on the ms forum, but looking for help from the wider community:
I am a 45 year-old male and this is my story:
last year all started with motion sensation in June for a couple of weeks and light-headed feelings.
this went away then in September:
muscle twitching (mainly calves) started suddenly, has been constant since. frequently on left eyelid and
less so on right eyelid. sometimes thing I can feel twitches on my butt and back
burning sensation and occasional numbness on left thigh
legs, particularly left leg, feel "weaker" to me but not measurably so at neuro exam, have also been able to continue
running (short runs, say 3 miles - which is all i've ever done) and a fair amount of walking (average 15,000 steps per day).
increased muscle pain, e.g. in arms.
gums suddenly receded - noted by dentist - never had this before
have had the following work-ups:
end of last year: mri of brain was clear
end of last year: mri of full neck and spine was clear
early this year: emg and nerve conduction studies were ok. fasciculations were noted - as expected.
early this year: motor\transcranial evoked potentials (to both feet) in the normal range for amplitude and latency
early this year: visual evoked potentials in again in normal range
i think the two neuro exams i've had have been "normal" - or at any rate I've been told there weren't any red flags.
had brisk, but symmetrical, reflexes on knees.
after this the neuro ran some fairly specialised blood work-ups, and found positive antibodies to voltage-gated potassium
channel (VGKC), in 2 successive tests. both times it was a low positve value.
my thoughts had been a progressive ms, I am 45, as I believe this doesn't always show on mri, at least initially. though the neuro
mentioned that having a normal Magnetic/Motor Evoked Potential to the lower leg/foot would be very unusual in PPMS, even in the early
any thoughts please, as to causes? there doesn't even appear to be knowledge of whether the vgkc is "cause" or "effect".
or has anyone else had similar?
thanks very much!