Re: Confusing Symptoms

Posted By CCF Neurology MD on February 16, 1998 at 17:13:13:

In Reply to: Re: Confusing Symptoms posted by Barbara-more info on February 10, 1998 at 04:42:16:







: Reading back through this, it seems I left a few important(?) things out.
[First nystagmus/vertigo probs 17yrs ago (during Thyroid probs) then leg weakness/tremors
about 6 yrs ago for about 2wks then just disappeared!]
All the really bothersome symptoms(left facial numbness,muscle weakness,
clumsiness etc.) started about Feb/Mar of 94, gradually got better for
about 5-6 months, then came back again(except facial numbness-that hasn't
happened again), got better,came back plus more weird symptoms each time,
increased vision probs etc.etc. for approx. 1 - 1/2 yrs then most symptoms
pretty-well faded away for about a year and 1/2. Other than an increased
susceptability to fatigue from physical over-exertion, mild tremors and
clumsiness, I was pretty much back to normal (for me,that is -*s*).
Just over a year ago, when I had the Major 'flare-up' with Severe vertigo/
nystagmus/diplopia etc all the other weird symptoms came back worse than
ever before Plus all the new problems listed in last posting. I could hardly
get out of bed for several days(vertigo/dizziness) and was too weak/clumsy
to leave the house for several weeks and driving was out of the question
because of vision probs. After a few weeks I started to feel better,my vision
was clear enough to read/use the computer again so I could get out to see the
Internist again. He was the first one to check my eyes and noticed the nystagmus
and pale optic nerve in right eye, told me again it was looking more and more
like MS to him, and sent me to the neurologist for MRI and to the opthamologist.
The opthamologist confirmed pale optic nerve,nystagmus and diplopia all
due to the MS (he had assumed I had MS probably because of my vision probs, cane
and the way I walked) I told him I was only a 'possible' at that time.
He replied, "well if it's not MS then it's a damn good imitation."
Two months later after examination, the neurologist said I "showed signs and
symptoms of classic demyelination disease." But 3-4 months later the MRI was
neg for MS lesions so he just put me on Amantadine for the fatigue and that
was it. The neg MRI was the good news; the bad news is that it's been over
a year since that 'Major flare-up' and the symptoms although much better, have
not totally gone away yet, this time. I've had a few very minor flare-ups in the past
year that seem to leave me with just a little less ability then I had started
with just before them so something has Changed, and not for the better. I've
also had a lot more of the 'autonomic problems' this past year, with the "Off
to the Races" tachycardia episodes and low BP/temp 'shockiness' episodes lasting
longer all the time (Very uncomfortable! but it always passes with no harm done.)
Any suggestions for the cold/painful circulation probs- I went off the verapamil
because of the possible hair-loss connection and the tachycardia/circulation and
'vascular spasms?' problems seem to gotten worse since then.
And what about these other problems including the bone loss, calcium
deposits in basal ganglia area, thyroid instability after 14 yrs stable, and
the Autonomic Nervous System probs, circulation probs,peripheral neuropathy,
etc etc. could there be something connecting all this to some sort of autoimmune
process or what? This all seems to be an awful lot of 'disorders' for one
small woman to have to live with, there must be Something causing such a vast
multiple system breakdown. I'm a cheerful-type person and it takes a lot to
get me down, but geez I'll tell you, some days are Really Hard! I'm getting
mighty tired of being called 'such a Great inspiration' and all that bunk when
I'd give my right arm for a couple of pain-free days.(that was a joke *s*)
Even if it Does turn out to be MS, it's livable and there's new treatments out
all the time. I guess my real concern is that I may be missing out on a chance
to slow down the progression of this "CNS Disease of unknown Etiology" by not
being correctly diagnosed in time.  Frankly, I just want my life back!-I know
I can never feel as good or healthy as I once did because of the degenerative
nature of most of my problems but isn't there some way of making this more
'bearable'?  Any suggestions/feedback or advice is certainly
welcome. Internet forums and This website in particular is a wonderful blessing for
those of us who don't wish our families/friends to know and worry about how much we
Really suffer but we still need some feedback and answers to particular questions.
  Thank you for your expertise, time,and space here.
=Dear Barb H., I have reviewed your case with Dr. R. Stanley Burns, Director of the Movement Disorder Clinic at the Dept. of Neurology of the CCF who has indicated an interest in evaluating you if you are agreeable.  While your case is to complex to come to a conclusion or diagnosis on the internet, we were struck by your relatively young age with a history of metabolic/endocrine disorders, autonomic disorders, abnormal movements and basal ganglia calcifications on your CT.  If you wish to be evaluated, you may make an appointment with Dr. R. S. Burns by calling 216-444-6467.  It is CRITICAL that you bring the following for your evaluation: all original MRI/CT films(not reports), all EMG/NCS reports, all muscle biopsy reports(was nerve also done?), any evoked potentials (if done), neuropsychiatric evaluations (if done), all cardivascular studies for autonomic dysfunction and all labratory results over the last 5 years (specifically metabollic and endocrine functions).  "This information is provided for general medical education only. Please consult your physician for diagnostic and treatment options." (note: if you see two answers, the second was typed after a system crash where we were unsure if the first had been safed).