June 2010


The "cake" would be "the cure"

 

Exciting times in the MS community.  CCSVI is all the hype and sounds very promising.  The researchers have now ran with it so I’m sure it will be a couple of years before we see a safe protocol put in place for normal MS’er to be tested and then treated with a safe procedure with minimal risk of re-stenosis. Some of the testing procedures available so far for CCSVI are prone to produce a “false positive” for the condition. 

More on CCSVI……the link is here: 

http://en.wikipedia.org/wiki/CCSVI 

I was in Dr. Kita’s office the other day and we discussed where we are with MS currently. This is my take on that conversation. 

Maintenance/Modifying Medication – If you have been diagnosed w/ MS…then you should be on one of these medications. Whether it is from a big name pharmaceutical or you have a natural plan that you follow……either way……you as an MS patient….have talked w/ your doctor and devised a plan of therapy in order to keep you stable. A plan to help the disease from progressing.  I personally am a big pharmaceutical guy. I take a drug called “Tysabri”. Some of the other big phama drugs and therapy’s available are Avonex, Beta Seuron, Copaxone, Rebif, Novantrone, Low Dose Naltrexone (LDN)…….to name a few. 

Conditions that enhance disease progression – I won’t go into all the conditions for the sake that I am not a doctor and am the least qualified to tell you what motivates the MonSter in all of us MS’ers……but I will talk to one condition that is getting all the hype right now and it is CCSVI (See wiki link above). It seems to me, and Dr. Kita agrees, that CCSVI is a condition that is not going to help your MS and also is not the cause of the disease. CCSVI is simply a blood flow/blockage issue in which a very high percentage of MS patients, that have been looked at for CCSVI, have in common. My hope is that a protocol can be quickly developed to detect and repair this condition in the MS’ers that it affects. The MS community needed this protocol in place yesterday

Myelin Regeneration (Repair) – Stem Cell. We’re getting closer but still not there.  I believe the procedure I had done worked to some degree and is slowly continuing to work. But how do we get the procedure I had done….put it on steroids?(Speed the repair….so to speak) This is the next step.  The study in which I took part in was effective in the fact that it proved to the world that this procedure can be safely administered and basically not kill anybody.  Now I think it is a matter of volume and further refinement. Meaning: “Which one of these little MSC’s is the magic Band-Aid?”  

  

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And lastly……”The Cure” – Let’s not lose sight of this……How do we turn our immune system off just enough so it will not attack us and eat away that Myelin? 

Immunology working w/ Neurology holds the answer I believe.  A while back a local Doctor I met last year got promoted. I received the following email: 

MEMO 

To:     VMHS/VMMC Boards, Benaroya Research Institute Board and Executive Leadership 

From: Gary S. Kaplan, MD, Chairman and CEO 

RE:      Dr. Nepom Named Director of Immune Tolerance Network 

I am very pleased to inform you that the National Institute of Allergy and Infectious Diseases (NIAID) has named Gerald T. Nepom, MD, PhD, as director of the Immune Tolerance Network (ITN), one of the largest government-funded clinical research networks in the country working to establish new treatments for diseases of the immune system. 

This is a tremendous honor and well-deserved appointment for Dr. Nepom, who presently is director of Benaroya Research Institute (BRI) at Virginia Mason. He will maintain both positions with BRI and the ITN, providing scientific oversight and management. The ITN appointment includes a $1 million management contract for BRI in 2010, confirming the institute’s international leadership role in immunology research. 

Attached is the press release with more details about the announcement. It will be distributed to the media and other audiences Tuesday, April 6. Please join me in congratulating Dr. Nepom and thanking him for his invaluable leadership in advancing science and eliminating autoimmune diseases. 

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Hmmmm……………..So what can our Immune systems tolerate??….Can we turn down the volume??…..Can we locate the mutiny in the Immune Army??  

I think I’ll try to pay Dr. Nepom a visit and see where we are at in all this. (Remember: Dr Nepom was the first doctor in Washington that I found that endorsed Professor Slavin’s MSC protocol). Dr Nepom then referred me to Dr. Kita. 

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Don’t get me wrong CCSVI is a great discovery and will help many when properly implemented. All that I’m saying is…..Eliminating CCSVI is not the end all…….and we need to stay focused on the “Cake”. 

Be Well 

Todd

.............pouring gasoline on the fire!

Made this crazy comment yesterday about liking the spasms that I have been getting in my legs and how I have this idea that the spasms are the movements that I need to walk correctly. I sent an email off to the boys at CTCI and this is how that went.

My Email:

Dear Dr. Slavin and Dr. Gesundheit,
 
I’ve been reducing the amount of Baclofen I’ve been taking. About every other day I will take 20mg of Baclofen. Some days I can go two even three days w/out any. This is a greatly reduced amount from earlier in the year when I would take 60-80mg/day. 
The spasms that I have recently in my legs are not really that bad.  And in a way….”I KIND OF LIKE THEM”!!!!!!!
This may sound really weird but the spasms that I have……are the bodily moves that I am usually unable to make.
For example:
You lay on your stomach and do a hamstring curl. (Meaning bring your heals off the table and try to touch your butt.)
Normally I am unable to do this but when I have a hamstring spasm……no problem….my legs quickly come up from the table and touch my butt. Before visiting Israel last June…..I was unable to do this hamstring curl at all……now…..the spasm gives me hope that all is not lost with that movement or that possible repair may have happened.  I’m not sure what to think but am hopeful of some possible future control.
Are these thoughts wishful thinking or could possibly some nerve regeneration be going on here.
I also have spasms in my tibula’ (spelling?) muscle that brings my foot to a right angle. (I have foot drop in that foot)
Also spasms in my hip flexors that raise my knee up.
Just wondering. Be Well,
Todd Small

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  Dr Gesundheit’s response:

Dear Todd:
Good to hear from you!
According to your baclofen reduction and your description I share with you that there is indeed place for optimism of further improvement! Patients reported symptoms as you did and it was actually the beginning of further improvement!

Thanks

Benjamin Gesundheit MD PhD
International Center for Cell Therapy & Cancer Immunotherapy Ltd

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So there you have it.

Hope for some of us MS’ers is like pouring Gasloine on the fire.  Now back to work!

Be Well

Todd

 

Finals are done.....School is out.....Baseball has ended.....and things seem to be settling down at the Small house......Time for Vacation.

Sorry I’ve been away…….things have been crazy around here. Beside the above mentioned, Julie has been putting in quite a few work hours and I have now recovered nicely from that bug (sickness) I acquired over the Memorial Day weekend. You could say that I’ve had some catching up to do around the house and in the gym.

You always wonder when you have MS and get sick……but  I seemed to have come out the other side of the illness rather unscathed.  I was a little weak the following week but now seem back to normal.  I just had a very productive weekend and Father’s day and now the family and I prepare to head out to Utah for “Mormon Mania II” ( A visit to Julie’s cousins) at the end of the week.  We’re hoping to hit up Yellowstone N.P. on the way back from Utah(I’ve never been). Traveling w/ the wife’s family is always a comic adventure…..I assume this trip will be no different.  I’ll put up some pictures as I get them.

An update:

Besides being bit by a bug (Sick) Memorial Day weekend….things have been relatively stable.  I had a physical last week and the Doc and the cholesterol check said things were fine…..”See me in a year or before if things change”…..he says.  The reason I saw him in the first place were 3 fold:

1) I’ve never had a regular GP….fixed that. He’ll work closely with my Neuro (Same Building)

2) Needed a physical….Done.

3) I took a fall about a month ago and have had swelling around my left ankle this whole time. It comes and goes w/ any activity and a good ice pack for twenty minutes will make it go away till the next activity. Still…I was concerned because things had not gotten better.

The doctor was convinced that it was a torn ligament due to the bruising (internal blood collecting) I described below the ankle at the arch of my foot when it happened.  That “bruise” is now gone but the swelling remains.

Although a torn ligament sounds horrible he was not concerned because I seemed to be getting around OK, the “bruise” (blood collection he says) in my foot was gone, and the fact that I’m not in any pain or discomfort. He pressed here and there around the ankle and nothing.  He says with normal people the healing from something like that can take 4-6 weeks.  “With you”….he says….”call me if things don’t change after ten”

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This last Tuesday was my 48th treatment of Tysabri. Everything was fine.  There have been 49 cases of PML reported since Tysabri’s re-introduction to the market place in 2006.  Dr Kita says there is a new blood test available this next month that has something to due w/ monitoring one’s PML risk. Hopefully a little more reassurance then.

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This last Friday was my last day at “Pushing Boundaries Gym” and “Lokomat” training for awhile.  The place cost a small fortune and I seem to be at a stalemate with the progress.  I plan to return to PB and “Lokomat” in August.  I receive partial funding at PB but at $90.00 dollars a visit you can see where I’m going here. 

Friday was my 112th time on the “Lokomat” machine and I’m currently in the process of trying to get some help from my insurance.  I currently am having 2 doctors write letters of medical necessity and then I will submit claims to the insurance and prepare for the long battle through and appeal process as I’m sure the claim will be denied the first time around.  I successfully won a battle similar to this back in 2008 when I received funding for my Bioness L-300 neuro-stimulator for foot drop.  $6000.00 to be exact.  We are talking about a little more money here w/ “Lokomat”….but hopefully I’ve learned a thing or two from last time and maybe…..just maybe…I can get some funds out of them.

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I’ve been tweaking my medication as of late…..cutting back actually.

Baclofen. 

The spasms that I have are not really that bad and in a way….”I KIND OF LIKE THEM”!!!!!!!

This may sound really weird but the spasms that I have……are the bodily moves that I am usually unable to make.

For example:

You lay on your stomach and do a hamstring curl. (Meaning bring your heals off the table and try to touch your butt.)

Normally I am unable to do this but when I have a hamstring spasm……no problem. Before Israel…..I was unable to do this at all……now…..the spasm gives me hope that all is not lost with that movement or that possible repair may have happened.  I’m not sure what to think and I’ve yet to report this to the doctors.  When I do I tell you what they think.

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Hopefully I’ll be able to round up some cash and continue with the “Lokomat” training this coming August or September.  Julie and I talked of a couple of car washes and maybe a bake sale fundraiser in July.  Until then…..I’m heading back to the pool which I have gotten away from since my return to work.  I think the pool will give the ankle some much needed time to finish healing.

Also….ever since the Memorial Day illness I’ve really needed to stretch more.  The pool is great for that.  My strength has maintained and the fatigue is a thing of the past (Thank God).  I think things are still slowly, slowly progressing for the better.  I’ve now gained a much needed 18 pounds since my return from stem cell.  Still working full time and enjoying being productive around the house on the weekends.

The positive numbers on the “Lokomat” progress reports don’t lie (The doctors loved them) and the tail of the tape at Pushing Boundaries says that I have gained 1” in circumference diameter around my thigh muscles since my return from stem cell last September.  I am confident of my return to “Pushing Boundaries Gym” for this fall.  Just taking a little financial and ankle healing break.

We’ll get this.

Be Well, Todd

"Hmmm.......you would think that the MS and I (gorilla) would have beat this "Todd" guy already?"

Well……I hope everyone had a good holiday weekend.  I know it was one that I would soon like to forget.   

It started off great….I would take an extra day off……stretch it out into a little mini vacation.  I had big plans……was going to get stuff done around the house…..a bunch of little pesky items that had just been bugg’in me for a while.   

Julie and I had stocked up on the groceries and we were go to go.  We were throwing a little party Saturday night.   

Then…….   

Something happened……   

Oh yea……   

I’ve got this disease……..   

“But I just need some rest”……I say to myself   

“Rest and I’ll be OK for the party” ……..   

But…….…   

But……   

But nothing………I wasn’t in control of the body this weekend………My MS was.   

MS and a little 1000 pound Gorilla on my back in the form of a flu bug or something.    

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It’s weekends like this last one…when all off the positive attitude……..all the fight……comes into question.   

As of late…..I had felt real strong…..convinced myself that things were changing a little for the better. Working hard and working out harder. Letting work go on the weekends and getting stuff done around the house. Happy w/ the small progress that I was making.   

Just when you think things are starting to go your way………….that’s when MS bites you in the ass.…….Hard.   

I was fighting off a little stomach bug or something this last weekend.  And when you have MS like mine…….and you get these pesky little flu bugs……things then get a little complicated.  MS people have weak immune systems to begin with….coupled with the fact that the immune system is always suppressed with one drug or another. 

When you need to call on your immune system to work that little extra……..MS proptly gives you the middle finger and tells you………..”Have a nice day”.    

Bodily systems shut down……Faculties cease to work properly (literally)…..and the ability to move is severely hampered by the fact that your body is incapable of multitasking.  Basically, your immune system is unable to fight whatever is going on inside you. Leaving the rest of your body immobile while things get sorted out.   

Trips to the bathroom and up the stairs can take up to an hour while you figure how to relax your body to move that next step up or how do you make it to the toilet that is just ten feet away w/out losing it.  Thank god for handrails and washing machines.   

The smartest thing I could have done this weekend was to stay in bed.   

“But……..I took an extra day off……”………………I say to myself.   

“But…..It’s a holiday weekend…….”   

“But…….I have all these simple little things I need to do……….”   

“But I had stem cell and I should be able to handle stuff like this now………..”   

 REALLY TODD????   

Come on DUDE!!!!!!   

………Shame on me……….I should know better.   

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 You always wonder when things like this happen:   

”Will I be able to bounce back”………..   

“Did this little setback take something from me mobility wise?”   

Answer is:…….we don’t know…..I’m sure I didn’t help matters by continually trying to push through it all the entire weekend.  

Example:

“I’m just going to run to the store real quick……I just need a spark plug for the lawnmower.”

Simple enough.

And then………all of a sudden…….you pee yourself in the middle of a Home Depot and the MS screams at you once again………..   

“Do you hear me now TODD????!!!!!!!! “   

Extremely embarrassed….You go home broken a little bit.  definitely defeated.  But then you wake up ask to yourself:    

“What the hell am I doing?”   

Go home…….hop in the shower and into bed.  The party Saturday night was tough………all of your friends partied right under your nose………you were to sick to come downstairs……just to even say hello……..Julie kept asking me all day if we should cancel…….I kept thinking things would pass…….they did not.  I’m sorry that I missed everyone….Sorry that Julie had to go it alone….I was just to weak to come downstairs and even say hi.  Good friends that have done a ton for me and my family. Friends that I don’t see very often. I was upstairs bummed out. It was a bad night and one I’d like to forget.   

When you have MS and the flu………….it’s a whole different animal…..or do we say the MonSter?   

A MonSter inside you w/ a 1000 pound angry gorilla on your back.   

Yeah……weekends like this last one are frustrating, disappointing and sometimes extremely embarrassing……but what are you going to do?  The MonSter kicks my ass a lot……he wins a lot of our fights…….but on the few days I do win…….I win big. 

Sadly……no ones sees it….the little victories are all your own……you can tell people and you wonder what they think when they don’t see a miracle. My victories are small and they are what keep me going.  Maybe I can lift my knee one inch higher today than I could yesterday.  All I’m saying is that you got to believe me and little things like that………unless you live it……are huge to me and give me hope. So take me for ice cream or something……..LOL. I will slowly put the mobility peices together….there are many…….and it is just taking a lot longer than I thought.

I like my fight w/ the MonSter………I wouldn’t have it any other way.   

Maybe it’s a control thing.  When you fight…you get to decide on how,what, where, when.   

Better to fight….than to have never fought at all……I say.   

Be Well   

Todd