Apparently my neurologist and I have dramatically different ideas of what remission and partial remission are.
To ME ..remission is 100% symptom free without the aid of medication
To ME partial remission is 100% symptom free with the aid of medication.
Active disease on a regular basis is not remission.
Dramatic improvement to have full days ... even several days a week ...without symptoms ...
But as long as I'm having a couple of days a week where symptoms exist, I'm not sure I consider that a partial remission ...
but not remission
My neurologist, today, used the phrase 'partial remission' to describe my current state.
He emphasized the word 'partial'
When I said I still have symptoms, most days, although certainly not every day and the fatigue I deal with is more of a lupus fatigue than MG fatigue (yes, they are distinctly different and I have made enough progress to know the difference)
he responded with "yes, but unless you take a dangerous medication, ignore an infection or run yourself into the ground, you're not in danger of myasthenic crisis any longer. You don't have to worry about crisis coming up to bite you on the ass as it's done in the past."
he had a medical student with him and I chose to not remind him that most of my crisis' came on the heels of dramatic/fast weight loss due to severe restrictive behavior related to my eating disorder ...
I guess what I'm trying to decide is ... is this a difference of perspective? A difference of opinion? Is it medically significant?
He recognizes that I have symptoms on a regular basis and still need medication.
He recognizes that things are still difficult
He emphasized the word partial
He emphasized that my own behavior controls much of the symptoms (and oddly enough, it does. I do not have symptoms on days I don't do much unless I'm not doing much because I'm in a flare)
He made it clear that he knows it is medication related and therefore I need to be medically treated as if the disease were 'active'.
So, does it matter, in the long run, if I think partial remission is symptom free and he thinks it's well controlled?