Today I got the letter my neurologist sent to my GP regarding our latest discussions, It upset me at first reading his next plan of action written down in black and white. I think I'm quite aware of the effort it would cost me to go through the processes for autologous stem cell transplant and honestly this prospect it quite upsetting to imagine the thing i might need to sacrifice for a chance at an overall gain in the long run. Some people would probably think I'm silly to consider giving up this chance, but for me I just wish I could be confident that there is no reason i should believe that I need to switch to another treatment.
The annoying thing from this letter is that the letter doesn't even reflect the truth. I didn't have the time to properly express the feelings/sensations I had been experiencing since my 'duloxetine adventure' before my neurologist had already stamped me and my case with the ever so typical relapse explanation (of course I have MS and so of course if something changes that must be due to a relapse 'imagine the irritated sarcasm in my voice'). The daily pattern was too rhythmic throughout the day for me to believe that this had nothing to do with the duloxetine. The areas where I experienced numbness and pain relief in the night, were the exact same areas where I was suffering these intense inner burning sensations by the early afternoon. These sensations were on and off at the same times each day. The letter is actually written as if I was really seeing benefits from the duloxetine but then I 'obviously' just started having a totally coincidental relapse. I can't believe he had the balls to say this to my face ... maybe just the narcissistic personality coming across and I should forgive him.
I really respect my neurologist and agree with the majority of things he has ever done for me in the last 10 years or so (I have so much to thank him for)... but this time I just think he is wrong (doesn't happen very often). I need to believe in my own gut instinct and know in my mind that he doesn't have the correct information to provide him or anyone else with an accurate analysis of my situation.
I know all too well how sick I can make myself feel with fear and anxiety. I just need to set my focus elsewhere until I have the MRI proof to know if this really could be the sudden end to my Lemtrada story. :-S
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