Re: Re: MRI (success?)

[Guest guest]

Hi

I have NO lesions and nothing on the lumbar puncture either yet am about to buy either a power whee;chair or scooter as I cant even walk anymore with my walker, my right arm and right leg aare useless and left leg is going in that direction now too.I cant cook, clean, brush my hair, have bladder problems, and horrible spasticity and stiffness and awful cramps all over my body!All the time......I have progressed to this in only about 2 years! 2 Years ago I was driving, taking ,y 3 kids everywhere, taking care of my dad who had advanced parkinson's. cleaning his house nad cooking for him then coming home and doing the same for my 3 kids! Living a very full and active life. Now I a m unable to do anything but slump on the sofa or lie i bed most of the time. ......And no lesions! So I definately agree-MRIs are not very useful!

Nola

[low dose naltrexone] Re: MRI (success?)

Hi , I am so glad you enjoyed your seminar. I have been taught that mri's are not the best diagnostic tool. My mri's lite up like a christmas tree yet I am mobile. Lots of cognitive stuff, fatigue, balance but not as bad off as some. My neuro. says when she looks at the mri and then me, she expects to see someone very sick. This is why I had a hard time when I read the abcr studies. Equally hard when I asked my neuro point blank if it was true that they were modest at best. She said yes, and also stated, that some people don't do well on them so what you read is people who do well on them. You don't read/hear of the ones who could not tolerate them. I had some pretty nasty side-effects from both copaxone and avonex.Sorry to butt in but it was nice to read about a neuro. who is upfront and not afraid of being himself.Take Care >> I went to an MS conference/seminar 2 weeks ago and the neuro (who I > now LOVE and hope he will be my new neuro when insurance changes in > Dec!), pointed out how the tests we have to monitor MS (MRI), don't > really tell us enough. He showed an amazing set of slides to us...6 > months worth of MRI's for a patient, one per month, who was in a > study that he was working on. The MRI's were all lined up to show > the same view of the same parts of the brain. Each month there were > changes...new lesions, lesions gone, big black spots, recurring > spots, almost no spots...all varied, random. The most shocking part > of the six months worth of MRI's (which seemed to show a LOT of MS > activity), was that the patient in the study was NOT experiencing > ANY "attacks" of MS the duration of the study! He clearly pointed > out that the lesions come and go, they get bigger and smaller...it's > the brain!...it's a living thing! The medical world can really > only guess (educated, yes, but it still is often a guess) at what is > really happening. We DO need to monitor things, because you never > know what's going on if you don't...but as he pointed out, we need > to take everything with a grain of salt. Judge your treatment > mostly on how you feel and how you feel about the treatment. Feel > better, be stronger, be active. It was a very inspiring > seminar...mostly just to see an MS expert talk about how little we > know and how he really is open to helping people. It was just > awesome and he didn't flinch when I sent up a question on LDN (ok, > maybe a little--the function WAS funded by Avonex!--but he said if > it were his patient and it worked for them, he'd support it! ).> > Best of luck with your decision on treatment...I agree with what's > been said about increasing your dosage. > > in Vegas>