My latest update is also towards the bottom of this post.

It wasn't that long ago....that "Elmo" was all the rage.

The latest buzz in the MS community is CCSVI.    

Chronic Cerebro-Spinal Venous Insufficiency

Wiki time:    

http://en.wikipedia.org/wiki/CCSVI    

Basically a poor blood flow issue.  Partially blocked veins and/or narrowing of the veins that take blood away from the central nervous system.    

It’s all the talk in the MS community and so…..of coarse…..I took the short cut and put my feelers out there.    

I reached out to my friend “Laurie” in Minnesota.  She helped me tremendously with my Stem Cell research (she basically did it all for me…..LOL).  I would have questions……I’d throw them at her…..and she would always get right back to me.  Her contribution’s to PLM (Patients Like Me) are priceless as far as I’m concerned.    

In the end…..Stem Cell was entirely my decision…..Laurie thought MSC was too early to jump-in and do anything…..and basically she was right…..the information (proof of successes) was just not there. YET!!!!!!!    

I respectfully diagreed…..and I’m glad I did…..something is going on now and I will get to that later in my post here.    

**********************************************************************    

Anyhoo……….back to CCSVI……    

I wrote to Laurie the other day:    

Hey Laurie,   

Hope all is well.    

In regards to CCSVI……does over 20 years of one’s exposure to metal dust in a machine shop atmosphere correlate into possibly increased iron levels in ones blood?   

Or is the blood Iron levels that they talk about w/ regards vain blockage in CCSVI…….come from some other source.   

I’m late in my education into the CCSVI issue……and as you know…..I’m not always the sharpest tool in the shed.   

Be Well, Todd   

**********************************************************************   

Laurie’s response:   

**********************************************************************   

Todd,  

As far as the iron deposits connected to CCSVI theory, in the words of my neurologist, “He pulled that one out of his ass”. Lots of diseases cause iron deposits in the brain, and none of them are associated with higher levels of MS. I looked up hemachromatosis (HFE), which is a genetic disease fairly widely distributed in Northern European populations. It prevents iron from being excreted during normal biological functions. You would think that if iron deposits are a cause of the symptoms of MS, and people with HFE have high iron levels, that there would be a lot of overlap between the populations. There isn’t.   

Remember all of the studies related to Dr. Slavin’s work?  

The testing on mice to show that MSCs would actually implant, and all of the lab procedural papers with his name on them?  

All of the backing information about exactly how his procedure would work, and what he expected?  

His ongoing study measuring EDSS scores, and keeping track of how patients are doing? His cooperation with neurologists?   

Zamboni has none of that. No papers, no test procedures with mice, no correlating studies. No replication of results from anyone else. Just one paper on the observation from an obscure vascular journal last year, and a few operations, apparently without follow-up testing and publishing. Since than, many people have jumped on the bandwagon and are considering flying to Italy to have an unproven procedure one. A procedure that actually is a high risk operation.   

Wait to see if anyone else can replicate his findings. The MS research community has been pretty open to researching the finding, and any kind of treatment at this point is wildly premature.   

A friend’s father is a neurologist. He was very generous with his time, and talked to me for about an hour on the phone shortly after my diagnosis (he lives in Utah). During the conversation, he commented, “If you think you’ve found a cure for MS, lay down and sleep on it. You probably haven’t”.   

Laurie   

**********************************************************************   

That was pretty well laid out I thought.   

Now….some may say……”Who is this Laurie.”  And “How could she possibly know all this?”   

Laurie is the real deal.  Her information is always quantifiable.  To prove this…I pose the same questions to Professor Slavin.   

In my email to Slavin…..You will also note an update to my rehab process.

Getting closer and closer......

***********************************************************************   

My email to Professor Slavin:   

***********************************************************************   

Dear Professor Slavin,
 
Still working hard……progress is slower than I would like but it is still progress and that makes me very happy. For the last month……I have put in eleven hours of work-outs in six days. Sunday’s are my rest day.
 
My current workout schedule:
 
Lokomat – 5/days/wk……M-F
Swim/walking and stretching in water – 3/days/wk……Teus.,Thurs., and Sat.
Core and leg strength 3/days/wk…..Mon.,Wed. and Fri. right after Lokomat.
 
(All training is one hour sessions)
 
I also stretch everyday for at least 1 hour a day.  I will be your poster boy when I walk again. 
 
I know that right now…I have the strength to walk.  It’s just that I lack the communication to my hamstrings, dorsi-flexors, hip-flexors.
 
The communication has improved tremendously in all of these areas since MSC transplant…..but when I tire….the nerve conduction fades quickly and I am then unable to move the particular body part very well.  I have seen much improvement with these areas when they are rested though…..so I am still hopeful for some future independent walking. 
 
My MS fatigue is obviously gone…….for that I am so grateful.  Before MSC transplant…..I was maybe working out for :20mins. 3/X’s a week.  So as you can see…..much improvement in the strength and endurance department. Thank You!!!!!!!!!
 
Questions:
In regards to CCSVI…..(Dr. Zamboni research, Italy)……does over 20 years of my exposure to metal dust in a machine shop atmosphere correlate into possibly increased iron levels in ones blood?
Or is the blood Iron levels that they talk about w/ regards vain blockage in CCSVI…….come from some other source.
I’m late in my education into the CCSVI issue.  I will soon have a MRI…I will be sending you a copy of those MRI results…..Is there something that I need to be asking Dr. Kita to be looking for w/ regards to the “Zamboni” research also?

Also……….when do we start to talk of another MSC transplant?………or not at all as long as I continue to see progress like I have been??????????
Sorry bout’ all the questions…….but something tells me that you more qualified than anybody I know to answer.
   

Thanks again and Be Well, Todd   

**********************************************************************   

Professor Slavin’s response:  (His response are in bold type) 

*********************************************************************   

“Dear Todd,   

Thanks for the update.  I am happy it goes in the right direction.   

As to your Questions:”   

You ask:……In regards to CCSVI…..(Dr. Zamboni research, Italy)……does over 20 years of my exposure to metal dust in a machine shop atmosphere correlate into possibly increased iron levels in ones blood?  

“No, no correlation with your disease.”  

You ask:……Or is the blood Iron levels that they talk about w/ regards vein blockage in CCSVI…….come from some other source.   

“No, and besides, no one knows if the theory is valid.”  

You ask:……I’m late in my education into the CCSVI issue.  I will soon have a MRI…I will be sending you a copy of those MRI results…..Is there something that I need to be asking Dr. Kita to be looking for w/ regards to the “Zamboni” research also?   

“Not in my opinion.”   

You ask:……..Also……….when do we start to talk of another MSC transplant?………or not at all as long as I continue to see progress like I have been??????????    

“Certainly not as long as we see progress.  In the future, we believe our ability to regenerate lost functions will be much better, so unless urgent, I think it would be better to wait.”  

“Slavin”  

**********************************************************************  

So there you have it………Professor Slavin agrees w/ Laurie……….”no one knows if the theory is valid.”……he says.  

So I guess when it comes to CCVSI…………..Patients may just be in order.  

Be Well,  

Todd

Advertisements