Hello,
I am visiting neuroi tomorrow. Won't even try and convince him of anything - figured out a long time ago what a waste of time that is?
Know he'll say I'm progressive which is what I appear to be - walker, wheelchair bla, bla, bla, bla..............
Is there anything I should be asking or saying?
I rely on all of you for words of wisdom and good advice.
Second attempt with computer. I am continuing with rulid and doxyi for now but am easing off on tini at least for now.
Emotional support isn't there either. Going to sign off now. Hopefully computer won't cancel out on me as it did with first attampt???????????
Best,
Loulou
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diagnosed MSii Jan.2000 , diagnosed chronic neurological lyme disease Nov.2002.
Lou, I somewhat doubt if
Lou, I somewhat doubt if Canadian neuros are any different from British ones, so there is little point in saying anything about antibiotics. Having said that a very definitely SPMSi woman was told by her neuro in Scotland that abxi were worth a try if her GP was willing to prescribe: wouldn't go as far as to prescribe herself though. Mine, more usually, just said that there was nothing to help except IV steroids if I had a very bad turn and I should arrange to see an MS nurse. Well, I didn't: I didn't want to know how to self catheterise and suchlike.
Try to tell him/her what you are doing and see the response: it'll be good for a laugh if nothing else and who knows, like the Scottish lad you might be pleasantly surprised. Print out David's pdf file and the two papers by him and Stratton which I gave you a while back and see how you go...............Sarah
An Itinerary in Light and Shadow
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Well, You were right Sarah.
Well, You were right Sarah. I wish I would have been pleasantly surprised, but alas NO. Gave neuroi David's pdf file. Told him antis. I'm on. That was it. In a nutshell, said "no proof".Said I'm secondary progressive MSi. Nothing offered. Said he'll requisition another mri but in this socialized medicine country will take 3 mos. of wait time. Suggesting possible chemotherapy, at a later date if I continue to go downhill. Was definitely insistent that all of the antis. may make me worse and create lots of new problems.So, that was it.He said I should enjoy life and stop looking!Famous last words. So, all in all, hope he will at least read david's pdf file but I'm not counting on it. At least, Dr. M. in US will prescribe antis. and is supporting me in my hopes and endeaveours.
Loulou
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diagnosed MSi Jan.2000 , diagnosed chronic neurological lyme disease Nov.2002.
Lou, now where have I heard
Lou, now where have I heard that before? Stop looking and enjoy, life indeed! In my book it is downright insulting for a neuroi to talk down to you like that, but at least you have your Dr. M to prescribe for you. Quite honestly, I would accept chemo only as a very last resort: I was never even offered it, deemed too far gone even for that I guess, so hang in there and give him a big surprise when next you see him!...........Sarah
An Itinerary in Light and Shadow
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Loulou will the MRI be
Loulou will the MRI be scheduled? Another 3 months of CAPi (or longer) may be good for a test result that may at the very least puzzle him! Hoping to hear that is shows remarkable results.
Louise
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.
Many thanks to Sarah and
Many thanks to Sarah and Louise. Sarah, you are my gold standard in the midst of all of trials and tribulations.Louise, MRI will be scheduled for me and will be approx. 3 mos. from now.
Here's hoping that I'll be able to floor my neuroi with good results.
I read and reread your blogs when ever I feel like giving up and I must say they keep me going.
Thank you from the bottom of my heart.
Loulou
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diagnosed MSi Jan.2000 , diagnosed chronic neurological lyme disease Nov.2002.