Why do you think that SPMSers fare worse than RR & PP?

[lucky125]

I have not been officially told that I am SP, but I have an inkling.
From what I have read of Dr. Zamboni's research, this group does not have positive outcomes like RR and PP. Why?

I would be happy just to have progression STOP! Improvement would just be icing. Is there more info from his study that I am not aware of that would answer my question?

Thanks for your thoughts,
Lucky

[Lyon]

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[lucky125]

HI Lyon,

Thank you for the thoughtful reply.

there is no way to ascertain that it has been stopped, short of letting huge amounts of time go by in the absence of symptom progression as proof.

If stopping progression is the most I can hope for with this proceedure, I would be satisfied. I've got plenty of time!

I was on Tysabri for 2 years before it inexplicably stopped working for me. In those 2 years I got rid of my cane, and only used the scooter for long excursions. Since then I have lost all of the gains I experienced.

I just feel that if this proceedure could stop blood and iron from accumulating in my poor brain, the nasty T cells would stop their assult.

Then my body would be able to heal, even a little, like it did on Ty.

Perhaps I am fooling myself, but if I give up hope, what is left?

[Lyon]

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[CureIous]

My take on it.


To me, because nothing uniquely specific to MS has ever been isolated, even if the MS disease process were "stopped in it's tracks" in "progressive" MS, there is no way to ascertain that it has been stopped, short of letting huge amounts of time go by in the absence of symptom progression as proof.

Yes, unfortunately there's no way around the time factor when we start talking proof, i.e. scientific proof.

Unfortunately, much of the debate seems to mix just that (scientific proof) with an individual's choice and/or experience, oft quoted as anectdotal, as if anectdotal were of little to no value. Well it is, in the scientific world, but I'm not a scientist, and to my knowledge there are few on here that ARE just that, so our standard of proof tends to be a bit less rigid. Myself, I understood to the best of my ability, the science and arguments for and against before making my best guess after weighing both sides, was it: Right or Wrong, Mostly Right, Mostly Wrong, Probably Right, Probably Wrong, Haven't A Clue and/or Wait For More Info.

Was it reasonable and plausible, that if this was shown to be an issue, that it was something to correct before stumbling headlong into the PP world at some undetermined point in the future? This is something that all the Dr's and Hospitals and Universities CANNOT do, that is, decide for you what is best and what is not, only lay out the options on the table, give you all the best info they can, then ask, "what is your decision?".

That's about all I see happening here, on a larger scale to be sure. My only caveat would be that people REALLY need to educate themselves before making a decision, and with some of course, that will not happen, because even with the best educated guess and the utmost sincerity, one can be sincerely wrong.

And I agree with you on the permanent nature of damage versus transient "attacks" that wax and wane. But as I've stated before, I have great faith in the brain and it's ability to compensate and heal, even around neural pathways that aren't there anymore. To what degree, who knows, I sure don't.

Great post Lyon, and we just might need a fair amount of time, much longer for PP and SP to see how they fare. Heartbreaking that we can't do more.
Mark.

[Lyon]

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[CureOrBust]

re-read Zamboni's last published paper. It is really dense with information. I remember reading it the first time and see-ing so many answers to questions that people had raised before it was released.

In 12 patients, the AZY system presented stenoses at several points and even aspects of agenesis of the lumbar plexuses (18%). It is noteworthy that such presentation was significantly associated with the PP course, with MS plaques distributed in the spinal cord.4 This malformation, of course, was not treated, probably explaining the worse results obtained in these patients with respect to the RR course.

And as to why SP "did worse". I wouldn't take too much out of the actual numbers, they were based on a very SMALL sample size.

20 with secondary progressive (SP), and 10 with primary progressive (PP)

And if I am reading it right, the SP's started with a higher EDSS (5 for SP 4.7 for PP) , and considerable longer average disease time (14 SP 9.7 PP).

[lucky125]

Hmmm.... I'm 19 years in with an EDSS of about 6. Uh-oh.

I have an appt with my neuro in 2 weeks. I am afraid he is going to really take the wind out of my sails. He is very aggressive in treating. He didn't hesitate to put me on Zenepax off-label when Ty failed me (Z never worked, and I am now on IVIg awaiting Cladribine-ha!). But I worry he will be like a lot of other neuros who have poo-pooed CCSVI.

Either way I am fortunate to have an appt. with THE Dr. Byung Lee, vascular surgeon from the conference, in early January. Guess I'll know more in January.

Thanks all! I'll keep you posted.
Lucky

[Stayfit]

Possible that because secondary progressive( I am) is a diagnosis given for people who have had MS for awhile there is more brain and muscle atrophy and we need time and a method to rebuild. Are you familiar with terms brain plasticity and muscle memory?

[lucky125]

Stayfit,

I am familiar with both terms. I am a (grudgingly retired) speech pathologist.

I am feeling more positive since I started this thread. I have been reading Marie's progress, and that of other SPs.

I had miraculous improvements while I was on Tysabri. They have since all gone away. But it wasn't all that long ago, and if it can happen once, it CAN happen again. right?

I don't think that I have passed the point of no return yet. I am more cautiously optimistic, but still hoping for great things, or even just good things. I'll take whatever I can get!

[thornyrose76]

Possible that because secondary progressive( I am) is a diagnosis given for people who have had MS for awhile there is more brain and muscle atrophy and we need time and a method to rebuild. Are you familiar with terms brain plasticity and muscle memory?

I am not, what is brain spasticity and muscle memory?

[lucky125]

Brain plasticity refers to the brain's natural ability to form new connections in order to compensate for injury or changes in one's environment.

Muscles are able to remember how to work even if nerves can't get the signal to them. I just read a fascinating article about this in Forbes. There are biomedical engineers who are implanting sensors in the brain and training paralyzed individuals to "think" their finger to move, for example. This technology is still in it's infancy, but it is fascinating. The spinal cord community is so important to us. They are going to be the ones who are going to figure out how to get our nerves working again!

[Rebecca]

I'm sure you're probaby already aware of this slide show and audio on how a doctor treated her own SPMS. She went from a wheel chair to riding her bike five miles to work each day. Here's the URL: http://wildhorse.insinc.com/directms05oct2009/

Ashton Embry has this link on his web site.

Please let me know what you think of this slide show. Did you find it helpful?