Biggest Lesson You Learned This Year?

[Jonathan A]

On  BLACK FRIDAY, I celebrated my second anniversary of leaving my fifth hospital  … after 8 months of not a single doctor being able to correctly diagnose either OCULAR MG or GENERALIZED MG.  Even two NEUROLOGISTS, a NEURO-SURGEON, and an EYE DOCTOR failed me miserably.   I was diagnose by a third floor nurse at the second of five hospitals … who had met other MG patients  … and their symptoms.

So I belong to four MG support groups  … and am still in remission from MG  … and medically induced PREDNISONE DIABETES II  … so no more LANTUS shooting up.

I still do not understand why I am in much better shape  … that all my fellow support members, who are still trying to taper off NASTY PREDNISONE, more IVIG treatments, … and more pricey options.  So the two LESSONS I LEARNED this past year.

ONE  … Take your meds religiously.  I don’t know which ones help me and which ones give me insomnia and muscle fatigue still  … but I must do the same pills to STAY IN REMISSION.

TWO  …  I must be MY OWN QUARTERBACK  … with all my medical records, tests, med lists, and dangerous LISTS. I have a TERRIFIC OLD SCHOOL NEUROLOGIST from the U of M Medical School in ANN ARBOR  … and he is one of a handful of medical “professionals ???” that have seen and tested me  … who actually KNOWS what MG means in ENGLISH.  Keep a traveling medical papers briefcase/messenger bag with you at all times  … along with contact information, of those who have helped you and know what MG is.  I am still having to pull out records, reports, tests, and handouts  … from    http://www.myasthenia.org,    http://www.myaware.org   and the two RARE DISEASE RESEARCH FOUNDATIONS  (who have requested and found for me over 1600 inaccessible medical documents for me to show to my other doctors who ask).

My other doctors still do not understand MYASTHENIA GRAVIS. They do not understand how easily I died of a CODE RED due to an overdose of anesthesia for an MRI test  … and lost my hearing for four months due to three antibiotics , including TOBRAMYCIN.  Also I have to explain why I have irregular blood tests  … as they do not understand what 5500 MGs of drugs daily and 2000 MGs of immune-suppressant meds, screws around with normal test results.   Because of my meds, my immune system is TOAST and I am on blood thinners as well … and have O positive … the thinnest blood.

So BE EDUCATED  … and be prepared TO EDUCATE YOUR DOCTORS  … as your safety depends on educating others, and religiously taking the MEDS, that your NEUROLOGIST is using to keep you ALIVE and SAFE….