I am a 30 year old male with clinically definite/laboratory supported RR MS.
Over the past two years, I've had three distinct attacks; the last, in January/February
of 1998, was the worst, and brought diagnosis. Since March, I have been on Betaseron.
Problems have included dizziness, numbness (left face, right hand/lower arm), parasthesias,
diminished hearing in the left ear, bladder issues, and
a bout of nystagmus.
These (physical) symptoms have come and gone. I am interested in the chronic
aspects of MS, in particular a variety of symptoms that have occured
before and since diagnosis. The befores include fatigue, which
seems extremely great, and cognitive problems. The post-diagnosis issues
are largely various twitches and fasiculations, which occur in
my fingers (right much more than left) and my arms (left much more than
right). When these first began, the twitches would last five or ten
minutes. Later, the twitches began to conlude themselves with
clenchings (of the hand) and pronations (of the arm, or the leg more
rarely). Finally, the progress over the 5 months of these events has been that my body
seems to dispense with the twitches--a few seconds of twitches seem to quickly lead
to a seizing up of the hand or the arm.
Through intentional motion, I can usually "overcome" them, but at night,
when I am trying to sleep (and thus lying still), these
seizings are more pronounced, or at least, more noticable. Their duration
is a minute or so, but as a series they can last
much longer (up to 30 minutes, but rarely). A few months ago, the
twitches--more like seizures--in my arm could be very violent, to the
point that they shook my wife awake, scared both of us, and promted me to
have an EEG (normal).
Several questions: My neurologist and I agree that we'd rather avoid treating
with drugs. Is the development of such twitches and seizures part of the
on-going chronic aspect of MS? Should I be more worried about these as active disease?
I ask these questions in part because I have heard that in the first year
or so after diagnosis--which sensibly comes often enough with what amounts
to the most serious exacerbation--the CNS is still settling down/re-wiring itself.
Which makes distinguishing the acute and the chronic very difficult (I think!).
Any helpful hints on how to monitor such matters?
Thanks very very much, for the *marvelous* Forum, and for any advice!
The "twitches" you describe do not sound like a typical symptom of MS, although
I do not have the benefit of seeing one of these to get a better idea
as to the exact abnormality. There are MS related symptoms which sound
vaguely similar to what you describe; the general term is spasticity, and
generally doesn't cause the type of involuntary movements at rest that
you claim in your letter. The abnormality that your symptoms sound most
like is myoclonus, which is only seen rarely in MS (the EEG test would
have detected this if you were symptomatic during the study).I am not
certain what the rationale for treatment is here, unless your doctors
strongly suspect one of the above and are willing to presumptively treat
to see if you show improvement.
Your other question regarding acute vs chronic is a little unclear; in general,
an acute event in medicine implies a rapid onset of symptoms or signs.
A chronic event implies a prolonged pattern of illness and symptoms.
In your case, MS is a chronic(lifelong) illness, whereas your exacerbations
represent acute events.
I hope the above was helpful. Good luck to you.
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