I had my 2 yr MRI Monday, October 8.
My Dr. called Weds but I wasn't in - I called Thursday but my Dr. and his assistant were at a conference until the following week. I begged for *someone* to just read me the report or fax it to me.... I'd been waiting a year for these results!
Finally a Dr. called me (not my Dr.)
"I see you aren't on any conventional therapy" was her first statement.
??HUH?? Wow- Hello to you, too!
Right away... I knew she was one of those "I'm-the-Doctor" Drs. I had seen several when I was first diagnosed... you know the type - they only want to put you on Avonex and IV steroids?
I said - that I was on an experimental regimen and my Dr. was very aware of everything I was and had been doing - could she please just tell me the results!
"Yeah well, antibiotics don't work - you have a lesion right now, we can start you on steroid infusion" - totally curt, condescending, just awful.
My heart dropped.
I asked alot of questions - where is it, how large is it, how many others are there, what was my lesion count, could she please fax over a copy so I could read it myself, etc etc - I was assuming she meant a NEW, enhancing lesion.
Her answers were short, she could not have been less helpful:
No she won't fax one over because my Dr. wouldn't want me to have a copy of a report.
It doesn't matter where the lesion is - because just having one means my disease is active.
It doesn't matter how large it is.
They don't count the lesions.
What are my symptoms?
I was angry by this point at her evasiveness and rudeness and replied that I have NO symptoms and have not for over a year - and that I have a copy of every test, report, lab test that I have had done since I was diagnosed and would she "Please put a note for my Dr. or his assistant to call me or fax over the report as soon as possible."
She says - "It's better if you call back, he won't just fax you a report."
I repeated for her to put the note on the file said THANK YOU and hung up on her.
What an awful, horrible excuse for a Dr.
I was super depressed and discouraged - but my husband said - WAIT to talk to your Dr - that just doesn't sound right since I feel great.
SO - a rough depressed weekend - she had made it sound like I should expect an attack any minute!
MONDAY... my Dr's asst calls me.
THERE IS NO PROGRESSION ON MY MRI.
THERE ARE NO NEW LESIONS.
EVERYTHING IS STABLE
Quite a few of my old lesions are still present (well duh... of course that means I must need STEROIDS!) but definitely no new ones or enhancing ones.
MY Dr's recommendation: keep doing what I'm doing!!!
I told her about the Dr. from Friday - that she basically lied to me and ruined my weekend with her scare tactics and agenda, that she refused to answer my questions, that she refused to send the report, that she didn't even respond when I told her I had NO symptoms.
She apologized for the idiot Dr.... explained that this Dr. is very against alternative therapies, etc... blah blah blah and said to just keep doing what I am doing and she faxed over the report!
As angry as I was - I am thrilled to hear the true report!!
But WHY are Drs... and MS patients (! I cannot tell you how many people look at me like I'm crazy when I tell them my treatment plan - even MS sufferers with debilitating physical deficiencies - refuse to look into this!) --- Why are they so threatened by the prospect of alternative therapies and regimens? I have seen many Drs since my diagnosis - and have found only 2 that, while scientifically, distantly, skeptical - are willing to entertain the notion that they don't know everything... and that one of these alternative plans could do some good. My Dr. made me sign a waiver - but never made me feel inferior or was belittling that I wanted to try this..... and he wrote all my scripts! I don't understand why so many Drs are so close-minded and rigid.
In the past 12 months....
My brain is 100% stable with ZERO progression.
AND I feel great.
Total mental clarity, no physical symptoms.
Walking 3 times a week, spending several hours in the garden each week, and just started a yoga class.
I cannot even express how excited, rejuvenated and most of all *thankful* I am....
Flagyl 500mg/8hrs x 5 days every month
LDN 4.5mg/ night
I'm no longer watching my diet closely, although I do eat a healthy diet.
Even the last Flagyl pulse...
For the first time EVER, I made it the entire 5 days without having to nap, no tingling present, no disrupting ill feelings - I did my normal daily activities the *entire 5 days*. I had one night sweat, and 2 instances of mild nausea - other than that NOTHING.
This had never happened before - I used to be IN BED for much of the 5 days... feeling utterly awful, gradually this got better and dwindled in days of feeling ill - until nearly nothing the last time.
I see my neuro in March for a check up.
May 2008 will be the 2 year mark for Flagyl... and I may stop at that point if I continue to have no response to the Flagyl pulses... or maybe continue until October 2008 when I will have my 3 year MRI...
Thanks to all of you have offered information, advice, and support!!