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10 month follow-up appointment with ms neuro; good appt., still in limbo

Jun 14, 2014 - 0 comments

This appointment was postponed from May.  In May I was a mess, and frustrated that by the new date I would be better.  I was (face weakness and trouble talking pretty much gone, but still right side funny).  I told this to my neuro at the beginning of my appointment.

Despite this, according to neuro exam, doc tells me "You are not better."  Pyramidal signs have not gone away, failed romberg test, orbit test and some others, still have babinski on right, plus weakness in various muscles, changes in vibration sense, blah blah

More testing, then a review appointment to follow.

Future tests:  myasthenia gravis bloodwork (done no results back), new imaging, EMG with repetitive stim/NCV (and after that depending on results a check for voltage-gated potassium channel antibody)

Does anybody know anything about that last test?  I googled it and still don't understand the point of it lol.  I think it's a peripheral nerve test?  Or maybe something to do with MG?

Meanwhile, hemaglobin now low (steady decrease since 2012), Mg low, D still low ... (despite long term supplements), iron rock bottom normal for first time ever.

This time he did not write "not likely" ms on the report to my doctor, just the plan.  No speculation of any potential dx.  I really like my neurologist -- however, at this point, he doesn't communicate.  I expect if I get dxed with something he will be excellent,  but he is cautious and doesn't make assumptions or jump to conclusions.  Pretty smart guy though -- the neuro exam he did was SHORT -- it was if he knew what I wouldn't do well on and only tested those things.  Two of them were things I had always done fine with.  He seemed frustrated that I had not yet had the EMG done -- was referred in January for this.

My only confusion; previously he stated that previous mris showed "no change" or "inconsequential changes" compared with previous mri.  This time, he listed under list of problems I'm having "changes to mri: require further imaging".  (Both these comments wtih respect to May and August 2013 imaging).

Surreal process for sure.

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