MRI Results

Results from MRI no. 5 Jan. 21.2006   -  "no worse- stable- WOW" This was on the report from my doctor.  I spoke only to the nurse.   This is 6 months after no. 4  and is news that any PPMSi patient of 10 years would probably be thrilled to hear but I admit to hoping for a really earthshattering statement but this is good progress and we should all be satisfied that an important marker is noted.    For myself I must remember that Sarah went 2 years, I believe, before  HER earthshattering marker.   The main thing is physical progress which goes by mostly forward bounds with a good dampening  during Flagyli.  We will likely accept the offer of the local radiologist (he is actually a rotating radio.) to examine all 5 and see if he embellishes any.  Apparently not even this happens in PPMS cases like mine.    Remember, last month my neuroi said MS lesions never go away.  Sarah has already proven that is wrong.  I would appreciate any comments David has.

Rica 

Comments

Rica ,i guess and hope your

Rica ,i guess and hope your next mri result six months later will show no lesions at all.

Guner

started abxi on 06-06-2004

On CAPi's protocol for Cpni in PPMSi since June 2004 - Currently: Doxyi 100mgx2/day - Roxyi 150mgx2/day - Flagyli 500mgx3/day (Continuous protocol since sept.2006)

Rica, stable means

Rica, stable means very good. If we corelate how we feel, we expect all these lesions to disappear. I guess, it is my turn now to order an MRI. I am procrastinating, because I don't want to suffer from the presence of the old lesions, but I awe you, guys, my report. I haven't been active recently, because of the trouble with my computer, Internet server and I caught a " flu". On Wednesday I will get rid of Comcast, so possibly another day off line. Barbara

Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. Use only LDNi.

Thanks BarbaraI will wait

Thanks Barbara

I will wait along with all of us for your MRI when you get around to it!   We are all known to be very patient people!   Seriously, your MRI is very much anticipated.  I, for one, can hardly wait.  We miss you.

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Looking at your weather,

Looking at your weather, I'm not surprised its quiet.  Its freezing here: cold wind blowing straight down from Siberia and into my studio.  That's what comes from living in draughty castles, I suppose......Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Rica, that sounds like good

Rica, that sounds like good news! You and your husband might be able to go over the films with the radiologist; Sarah and I did with her MRIs - our radiologist was really very helpful and spent quite some time with us. And there's nothing like seeing things with your own eyes; reports aren't quite the same. Your improvement of ability and stamina is the great thing, though; I'm very pleased for you.  David
D W - [Myalgia and hypertension">i (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei. No medication now. Morning BP typically 110/75]

It is VERY quiet around

It is VERY quiet around here again!  Having finished my Flagyli and done my walk (no run yet) I am up and going, happy to be done with it!  Dr R and I went to the once-a-week MRI box on wheels to request myall my films.  They should be here on Thur. and R. also said thia radiologist LIVES HERE!.  It is his group that is somewhere else so getting together may be much easier than I understood.  

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

 Rica- It certainly is

 Rica- It certainly is quite this weekend. Last weekend there were so many posts that I could hardly keep up! Nice to have a slower time. It's an incredibly beautiful day here in northern Ohio, shirt-sleeves warm, sunny, enjoying being outside despite the tinii aches-- but more energy today! Hope you enjoyed your walk.

On Wheldon/Stratton protocol for Cpni in CFSi/FMSi since December 2004.

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

 "Yes, the radioLOGIST

 "Yes, the radioLOGIST does it in public with a shameless lack of inhibition kind of like JimK!"  Rica, what do you mean!!! 
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

It is so nice that JimK's

It is so nice that JimK's humor has returned that it should be celebrated,  yes?  Personally, I love puns but mostly they are not my own.   This is far enough down this road!

Rica

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Rica,I say "yes" that is

Hi Rica,

I say "yes" that is VERY good news. Marie's posting of the study on PP MRI scans is important because it flies in the face of the popular notion that PP and SP mser's stop having lesions. I have heard this as an aurgument as to why some of you guys on abxi have shown no progression on imaging. That, in fact it's not the abxi, but just normal disease progression to stop having lesions---bunk!

I also think Sarah is right, too. The real test is how you are feeling. I believe that some researchers are finally beginning to recognize that inflammationi, lesion load,etc. has much less to do with progression than once thought.

One of the most profound bits of information for me to help decide on this therapy for Jim was the findings in Siiram's latest trial results showing a decrease in brain atrophy--I believe that is where progression to disability lies.

no worse-stable---you know you are way past that!!!!

Lexy

--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi with CAPi

And thanks to you, Lexy,

And thanks to you, Lexy, also.

It is my 5th and final day on my 18th pulse.  I feel (and am) tottery and fuzzy.  It took 5 days to get to the bottom of the depths.  It will take 5 days to get back out.  This is just some more information to help balance the rather delicate job that you have.   You have the attitude it takes and I bet your husband does, too.

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Rica, Marie is absolutely

Rica, Marie is absolutely right here.  "No worse - stable" for a person with longstanding PPMSi translates as "Gosh, I've never seen this before."  You know yourself how well you are doing, so MRIs seem almost irrelevant.  Anything that shows up as a white spot on the scan is only water, not a real, solid lesion of the kind that will never go away.  My scan, even the last one, still looks atrocious to my mind, not a bit like how I feel.  As you said yourself, it is the physical progress which counts.  My goodness, you are even running.  That's more than I am doing.  I will, though!  So don't you dare change your normal, sunny disposition because of this.  Well, we'll allow a few days off with the flagyli, but just think back to how you were, not so long ago.  Actually a "Rotating Radio" sounds quite fun.  Does he do it in public?....Sarah
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Marie and SarahThank you

Marie and Sarah

Thank you for your thoughts and information.  Failure has never been part of my vocabulary, as I suspect can be said for most of us here, but neither  has delusion!  Yes, the radioLOGIST does it in public with a shameless lack of inhibition kind of like JimK!  I have to admit again to feeling a bump in the road but only a momentary one,  having been brought back to the true reality that I have to act more than I have to think!  And both have improved further than I ever thought would happen.  

Rica 

Ignorance is voluntary bad luck.  Lauritz S.   A true Viking

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Here;s some scoop Rica

Here;s some scoop Rica as I see it just for grins http://jnnp.bmjjournals.com/cgi/content/full/68/6/713 abstract quoted below:
OBJECTIVETo document clinical and magnetic resonance imaging (MRI) characteristics of a large cohort of primary and transitional progressive multiple sclerosis (PP and TP MSi) patients over one year.
INTRODUCTIONPatients with PP or TP MS have been shown to have low brain T2 and T1 lesion loads and slow rates of new lesion formation with minimal gadolinium enhancement, despite their accumulating disability. Serial evaluation of these patients is needed to elucidate the pathological processes responsible for disease progression and to identify clinical and MRI measures which can monitor these processes in treatment trials.
METHODPatients, recruited from six European centres, underwent two assessments on the expanded disability status scale (EDSSi) and MRI of the brain and spinal cord, 1 year apart.
RESULTSOf the 167 patients studied (137 with PP MS and 30 with TP MS), 41 (25%; 35 PP and six TP) showed a one step increase in the EDSS. The mean number of new brain lesions seen was 0.88 in the PP group and 0.47 in the TP MS group. Both groups demonstrated change in T2 lesion load over the year (p0.002), with median percentage changes of 7.3% in the PP group and 10.8% in the TP MS group. The PP group also showed a significant change in T1 load (p< 0.001, median change 12.6%). The number of new cord lesions seen was small (mean of 0.14 in the PP group and no new cord lesions in the TP group). Both groups demonstrated a decrease in cord cross sectional area (p< 0.001, median changes; PP 3.8%, TP 4.9%), but only the PP group showed evidence of significant brain atrophy (p< 0.001, 0.95%).
CONCLUSION Although the monitoring of disease progression in this patient group is difficult, this study demonstrates changes in both lesion load and atrophy, which, if shown to correlate with clinical change over a longer time will facilitate therapeutic trial design.
(J Neurol Neurosurg Psychiatry 2000;68:713-718)

Here's my take on this: First this is the study I pasted becasue it has a large cohort. We always look for larger numbers with 30 being the absolute minimum to consider findings at all meaningful. anything else is preliminary. So this is a good study. With 167 patients this study is weighty. SO what did they find? PPms patients gained lesion volume with median change of 7.3%, edss score increases, and atrophy in a one year window. The nurse gave you the bottom line on your MRI but did she mention any of the parameters? The report should be interesting to read mentioning I would think atrophy, lesion volume etc. No matter what "stable" sounds good, but it will be nice for you to see the real report. And it's darn true you went down in EDSS score no matter what so you already are ahead of the game . I look forward to more expert opinion also

marie

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro