Quote:
Originally Posted by kicker
I think my neurologist knew right away it was PPMS as I also suspected. He did not diagnose me with that right away in order to give me the time to try a DMD as insurance companies will not allow them for other than RRMS. After a long time of giving it a try (with no success) he wrote PPMS on my file. My current neurologist talks, is very receptive (my e-mails answered within 12 hours or less) and treats symptoms. He is good, if anything comes up not in his field, notes it and refers me out. His rating by patients on-line gives ghim 5 stars and calls him compassionate. I copy and send him. But all my tests were almost trxt-book MS results and my anecdotal history very PP, not everyone's MS is so clear-cut.
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My neuro and yours must have gone to the same school. I also realize he showed me as RR to get insurance to pay. I like to think he meant well, but my DH was sure ticked off (at me!) when I told him I chose to stop all CRABs due to ineffectiveness. He believed the typical neuro quote "You don't know how much worse you might be if you hadn't (or don't) continue taking it."
He wanted me to try another chemo, Cytoxin. I said no. When he reccomended Tysabri, I asked him if he had ANY PP patients on it that had shown a slowing of progression, (he's part of a large group of MS specialists in Atlanta), and he said no.
So I said "No", as well.
Now at my annual appointment he kindly smiles, chats, and apologizes for not having anything now nor on the immediate horizon for PP. I hope for others that they find something soon to help.
Karen