It is nice to finally be off that bumpy road

Well it’s been one year since transplant in Athens.  I think after I returned home I was saying to myself……”What in the hell did I just do?” 

I was definitely pretty weak and in no shape to immediately return to work. Matter a fact…..It took 4 months of hard rehab and then I was still pretty weak when I returned to work in February 2010.  How these people do it (return to work right away) I do not know.  I guess everybody is different.  

It’s been awhile since my last update and I apologise.  I have been working a ton.  In the last 40 days I have only had 2 days off.  Pretty much worked all of July as well. 

I’ve been feeling very strong. Even w/ all the working I’ve been doing, I always try to get a good hour to 1.5 hour…workout in at home.  Started lifting weights again and then I’ll finish on the elliptical for 20-25 minutes that same day. 

(Yes…….my life is that boring right now…..Work, exercise, sleep, eat…..hang with family………….Goto work…and do it all over again…….day after day……. 

I have not been to “Lokomat” training sine June.  I plan on returning in October providing I can find some funds.  I think I will do alright when I return as I feel with every month that has gone by…….I seem to be getting stronger. 

I know the CCSVI is all the rage right now in the MS community and I’ve been following it a little bit.  Not as much as I could be only because I’m so caught up in my own progress, getting stronger and uping the resistance in my training schedual.  I still feel like things are slowly getting better. Any free time I have right now seems to be on getting my financial house in order and submitting insurance claims.  So sorry bout the boring report. 

I sent an email off to professor Slavin the other day (Aug. 30, 2010) and here is that exchange: 

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Dear Professor Slavin,
 
A little over 11 months since the MSC procedure….all is well….and I could not be happier.
 
This last weekend I did not work. Before that, I had worked 26 days in a row.  I used to work a lot of overtime to make extra money for the family up until the summer of 2008.  Then,…because of the MS fatigue….I was not strong enough to work weekend overtime and used my weekends to rest up for the next work week.  I missed a lot work time to MS fatigue in 2009. The Israel and then Athens trips took a lot out of me as well… last year.
 
Hindsight…I wish I could have seen more of those beautiful countries……But I was there for MSC and didn’t have a lot of energy for sightseeing.
 
Anyway….hopefully those days are behind me as I am much, much stronger now and getting stronger by the month. I’ve gained 15 pounds (muscle mass) and I now work all the weekend overtime I want.  I still have good energy after work to exercise.  I even started to lift weights again.
 
Unfortunately I have had to take a break from my “Lokomat” (gait/re-education) machine due to the cost involved.  Since my return from Athens I have used the “Lokomat” machine 110 times (between 40-50min sessions).  At $160.00/visit, you can see why I had to stop.  I have been fighting w/ my insurance company to help with some of the cost…..but so far I have got nothing out of them.  Once I get some more money…..I hope to get back to “Lokomat” training, but for now……I’m still exercising at home just about everyday and am staying strong.
 
A lot of people who I talk to on the internet, which have gone through your MSC procedure, all comment on the same thing.
 
We are all grateful for the lessened MS fatigue and everyone I talked too is so grateful to have that quality of their life back.
 
I went to a fundraising event this last weekend and ran into Dr. Jerry Nepom. I told him of how happy I was to have had the procedure done.  He again asked about the published work and I assured him that it was out there.  I have read the report but seemed to have misplaced the link on my internet browser.  Could you pass it along to me again?
 
Anything new on the horizon with your work in regards to MSC or something I may be interested in?  I know you have my cells just sitting around…..I wouldn’t mind doing this all again if you think it would be to my benefit. Of course, I would need some time to gather some money together. I think I am still making slow progress…..with the empathise on “slow”. Definitely I am much stronger than last year and I seem to be dealing with the heat better.  I even sweat now when I do my cardio exercise. Haven’t done that in a while.
 
Hope all is well with you and everyone I met at CTCI.  Say Hi to them for me.  Thank them for their hard work.
Thank you Sir as well.
Be Well
Todd Small 

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His response: 

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Dear Mr. Small, 

Thanks for your kind words. Attached please find some of our publications on the topic. 

As for the future, please note the following:
 
We have gained a lot of experience treating patients with multiple sclerosis with bone marrow derived mesenchymal stromal cells (MSC) and now also using adipose tissue derived MSCs which can be prepared from liposuction. Again, some patients benefit a lot while others do not. Rarely, patients claim disease progression but no complications thus far from the procedure itself.  When patients benefit, which seems to be the case in about 60% of cases – we know we have done some good. When patients do not report any obvious benefit, we do not know if this means failure or merely slowing or stopping the disease process. Only future will tell.
 
As you may know, we are constantly pioneering new procedures for patients with MS and other neurological diseases as well. For your information, we are making continuous progress and recently developed new future methods to improve the outcome. 

In the laboratory, we can now trans-differentiate bone marrow and adipose tissue derived mesenchymal stromal stem cells to neural stem cells, motor neurons, dopaminergic neurons, astrocytes and oligodendrocytes that can produce myelin, and therefore we believe it may be possible to use such methods to induce re-myelination in patients with multiple sclerosis and like this improve the outcome using cell therapy.

We need to do animal studies to confirm the efficacy of out new patented procedure before we can get approval to apply our new methods clinically at the patient’s bedside. This is why we always keep frozen cells in our freezers, to be able to come back and possibly provide more effective treatment in the future.

Interestingly, adipose tissue derived mesenchymal stromal stem cells seem to develop much faster and much nicer as compared with bone marrow derived stem cells but we do not yet know which source of MSCs is more effective clinically.
 
In summary, what we can suggest now is one of the following:
 
–      Try treatment with adipose tissue derived mesenchymal stromal stem cells (MSC) which can be prepared from liposuction which in the laboratory seem to be most effective in transforming into neural stem cells and other cell types of the central nervous system although no one knows which MSCs are better, bone marrow or adipose tissue derived, yet getting similar yet different type of MSCs may provide another chance in case such cells are clinically more effective.
–      Do nothing now and wait until we finish investigating our new procedures in animal models and if such experiments will show benefit, get treatment using your own bone marrow cells we keep for future procedures, using MSCs pretreated by our new biotechnology.
________________________________________________________________________ 

Shimon Slavin, M.D.
Professor of Medicine
Scientific & Medical Director
The International Center for Cell Therapy & Cancer Immunotherapy (CTCI) 

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So there you go………..I’m feeling strong and am back to my old ways………cheating sleep,  working out hard and still………ALWAYS………tring to wriggle free from the confines of MS. 

Not cured…….but very stable…….HAPPY……..PRODUCTIVE…….and thankful for family and friends support and progressive science. 

Be Well, 

Todd 

******** Note: I had my 52nd dose of Tysabri on Teusday……I’ve enrolled in a new blood study that pertains to the J.C. virus.  I’ll be updating on that soon as I hear the results from Dr. Kita in about 3 more weeks.

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Walter Reuther (second from right) at the March on Washington, August 28, 1963

Happy belated “Labor Day” everyone.  Just as I wish my neighbor to have affordable healthcare………….. 

………I’d also wish him to have a decent paying  Job!!!!!!!!!!!! 

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I came across this article that I found interesting. If you are “Anti-union” as some of my family and friends are….you need not open the link. 

I found it interesting with such a high unemployment rate these days. 

From the article: 

     “Only 12.3 percent of American wage and salary workers belong to unions, according to the Bureau of Labor Statistics, down from a peak of about one-third of the work force in 1955.” 

    “Between 1966 and 1970, as Gerald Seib pointed out last week in The Wall Street Journal, the United States enjoyed an astonishing 48 straight months in which the unemployment rate was at or below 4 percent. No, the unions didn’t do all this by themselves. But they were important co-authors of a social contract that made our country fairer, richer and more productive.” 

The Link:

http://seattletimes.nwsource.com/html/opinion/2012804832_dionne06.html

  

    “……….organized labor is increasingly foreign to American culture. The union movement has always been attached to a set of values — solidarity being the most important, the sense that each should look out for the interests of all. This promoted other commitments: to mutual assistance, to a rough-and-ready sense of equality,…… 

….. to a disdain for elitist,……..”

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Unions have a history……and unfortunately, only the bad apples are remembered and so much of the good goes unmentioned.  Let’s hope our new-found “corporate greed rats” (Who plague health insurance and major pharmaceutical) suffer the same fate……..minus the “hit-man antics”.  Jail or public humiliation will do. 

Health and Prosperity All, 

Todd 

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Chicken Tax?

I know that was the first thing on your mind after reading that……LOL

Reuther (pictured above) and the 1964 Chicken Tax

 

U.S. sales of VW vans in pickup and commercial configurations were curtailed by the Chicken Tax. 

Reuther played a role in a historic episode during the early 1960’s, known as the Chicken War. France and West Germany had placed tariffs on imports of U.S. chicken. 

Diplomacy failed and in January 1964, two months after taking office, President Johnson imposed a 25 percent tax (almost 10 times the average U.S. tariff) on potato starch, dextrin, brandy, and light trucks. Officially, the tax targeted items imported from Europe as approximating the value of lost American chicken sales to Europe. 

In retrospect, audio tapes from the Johnson White House, revealed a quid pro quo unrelated to chicken. In January 1964, President Johnson attempted to persuade Reuther not to initiate a strike just prior to the 1964 election and to support the president’s civil rights platform. Reuther in turn wanted Johnson to respond to Volkswagen‘s increased shipments to the United States. 

The Chicken Tax directly curtailed importation of German-built Volkswagen Type 2 vans in configurations that qualified them as light trucks — that is, commercial vans and pickups. “In 1964 U.S. imports of “automobile trucks” from West Germany declined to a value of $5.7 million—about one-third the value imported in the previous year. Soon after, Volkswagen cargo vans and pickup trucks, the intended targets, “practically disappeared from the U.S. market.” As of 2009, the Chicken tax remains in effect. 

“Wikipedia”

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I’ve always wondered when VW would bring a pickup to US market……..NOT!!!!!! 

Working this weekend and things are still good.  I need to update but today……………

UW vs. BYU

(4:00p – pst)

Dawgs:

Go Dawgs!!!!!.......

vs.

 

It's the BYU Cougars.......right???????

Hmmmmmmm……………….

Danny………….you guys may want to re-think that whole mascot idea.

Be Well my Utah Buds,

Todd

““If one step or ‘piece of research’ of an E.S.C. research project results in the destruction of an embryo, the entire project is precluded from receiving federal funding,” wrote Judge Lamberth, who was appointed to the federal bench in 1987 by President Ronald Reagan.”

Maybe the women who donate or sell thier embreyo's......need to attend church more often. God forbid what they might do......actually help someone?

Sorry I’ve been away……all is well.  

“So how has your summer been Todd…….?” 

“well…….um….oh..um…………I worked a lot of overtime?” 

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Currently on my 22nd day of 26 days in a row here at work.  Not real fun…but still catching up on bills and stuff.  I’ll update a little later…(no real changes)….definitely much stronger than last year. Couldn’t have pulled these long work periods off last year. 

 I came across this article in the NYTimes Monday. 

   

Thought I would share: 

http://www.nytimes.com/2010/08/24/health/policy/24stem.html?ref=health 

Embryonic Stem Cell holds a world of promise for the inflicted. Many of us that are still young and that could benefit to lead just a little better quality of life.  Maybe even save government from taking care of the sick. 

Don’t kid yourself…..the world has already passed us by when it come to research in this field. 

It’s called your tax dollar hard at work……..or not. 

Be Well 

Todd 

"Life"...........just trying to make the right moves

Well hopefully everyone had a good 4th of July 

The family and I were on vacation the last week of June.  We traveled down to Salt Lake City for “Mormon Mania II” (a visit w/ Julie’s cousins).  We timed it just perfect……when we arrived in Utah they had just had their hottest day of the year so far (94 deg.) I think one of the days we were there it was 88 deg.  The rest of the time it averaged 92 – 97deg. 

Still wouldn't want to be let out here........

MS people like me love the heat……..NOT!!!!!!! 

Actually…..I did very well compared to just one year earlier when the family and I were in Israel with very similar temperatures. 

Last year in Israel my activities were limited to a tiny air conditioned hotel room, the lobby and assistance in and out of the hotel pool.  We only ventured out once in the 8 – 9 days we were there to site-see and on that particular day……I spent most of my time in a wheelchair. 

Utah this year was much different. Everyday I went along with everyone and although we brought the wheelchair……..we never used it.  The heat this year did not totally wipe me out and I was fine on most days. No long naps half the day this year from heat fatigue.  I kept up with everyone and to top it all off……the air conditioner in the house we were staying was broken.  The house was very warm all day/night long and I did OK.  Little did people know…….this was a huge test for me and I passed! 

The difference -Stem Cell…….

  

…..nothing more/nothing less. 

  

People returning from Slavin’s stem cell protocol in Israel have all commented on how the MS fatigue has lessened in a big way for them. Giving them their quality of life back.  I have reported on this for months now.  And now…after this last vacation……I can honestly say that my:

Heat intolerance has greatly improved!

I’m also seeing a difference here at work….the shop is also not air conditioned.  It was 94 – 98 here in Seattle this last week.  I missed no work due to heat and I also have not used my cooling vest yet this summer……no need for the vest……this is another huge MS win for me.

  

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Thank you Danny, Kelly, the kids, and the hundreds (just kidding) of other Tilby clan that welcomed us to their beautiful homes and city. 

The kids and I had a great time and I promise to educate my wife in the art of getting out of her street clothes and into a bathing suit before attempting to ride a “jet-ski”. 

……I know, I know..the thing wasn’t supposed to tip over……right? 

Good times…….Much love to all of you…..and I’ll start thinking Lake Powell 2012. 

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Lately, I have been seriously busy at work…….we have a new plane (747-8)……and the shop has been getting a ton of new work packages that we have not seen before.  Good to be busy at work again, good for the income…….but bad for updating blogs and communicating with people. Sorry bout the lack of recent updates. 

I’ve also been: 

Appealing property taxes 

Submitting insurance claims for Lokomat 

Finding a new auto and home insurance group 

Trying to balance the “Small” budget while working 7 days a week. 

I did get outside and enjoyed some yard work with Julie and the kids the last few weeks.  The place is starting to look pretty good.  But always something to do with the never ending remodel. 

My working out schedule has been put on hold for a while.  I plan to return to “Pushing Boundaries/Lokomat in September or October but I also need to find some funding first……I’ll just add that to the never-ending “to do” list 

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I have been stretching a ton lately. About 2-3 hours a day. This is almost a workout in itself with the effort that goes into it.   The “good spasms” continue. Spasms that simulate mobility needs that I currently cannot achieve on my own.  These spasms make me very hopefully that I may be slowly seeing some nerve regeneration in these areas.  Mobility is definitely not lost in these areas as I had once thought just a year ago. Very exciting but also frustrating at the same time.  Spasms such as these have robbed me occasionally of some sleep but some hard stretching to the area can usually settle things down.  

Eventually some spasm episodes do not subside after lengthy attempts at stretching so I do have to reach for the Baclofen.  I have been on that drug for so long that many of my “good spasm” attacks that I get while trying to sleep can be associated to withdrawal from the drug as defined in the “Wiki” piece here: 

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

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the site partially reads:

“Baclofen Withdrawal syndrome

Discontinuation of baclofen can be associated with a withdrawal syndrome which resembles benzodiazepine withdrawal and alcohol withdrawal. Withdrawal symptoms are more likely if baclofen is used for long periods of time (more than a couple of months) and can occur from low or high doses. The severity of baclofen withdrawal depends on the rate at which baclofen is discontinued. Thus to minimise baclofen withdrawal symptoms the dose should be tapered down slowly when discontinuing baclofen therapy. Abrupt withdrawal is most likely to result in severe withdrawal symptoms. Acute withdrawal symptoms can be stopped by recommencing baclofen.[16] 

Withdrawal symptoms may include auditory hallucinations, visual hallucinations, tactile hallucinations, delusions, confusion, agitation, delirium, disorientation, fluctuation of consciousness, insomnia, inattention, memory impairments, perceptual disturbances, anxiety, depersonalization, hypertonia, hyperthermia, formal thought disorder, psychosis, mania, mood disturbances, restlessness, and behavioral disturbances, tachycardia, seizures, tremors, autonomic dysfunction, hyperpyrexia, extreme muscle rigidity resembling neuroleptic malignant syndrome and rebound spasticity.[16][17]

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I sort of feel like a “Junkie” reading that but the fact remains……..I’ve taken Baclofen now for 12 years…some years ,  high doses. To stop dosing all together, like I have been trying…… may not  be in my best interest. Stem Cell has made my body reaction more sensitive to the medications I take. No longer do I need the high doses of Baclofen to control things. Now just 10 – 20mg/day.  Many days  I have taken no Baclofen at all and got away with just stretching out good. This is where I want to be w/ this drug.  I have said before that I believe this drug inhibits nerve conduction.  

Baclofen has never helped w/ the leg stiffness(not spasm) issue that I have had for some time.  I am now taking 4mg of Tizanadine (4mg/day) to hopefully help with that.  So far I have seen a little help w/the stiffness. The drug does make me sleepy so when I dose at night it is hard to guage the effect.  It’s still early. I’ll keep reporting my results w/ this drug as more time passes. 

 Tysabri is tomorrow and I’m ready.  The “TY tank” feels a little low.  It’s been a hard month of heat and travel. I usually get a “pick me up” right after my monthly “TY tank top off”. 

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Handling it

 All in all……..It’s great to have some of my life back.  Gone is the everyday burden of the disease.  Yes…I’ve been slacking at the workouts cause I’m currently up to my ass in paperwork. A necessary evil we all get stuck with every once in a while.  I’ll get through this paperwork nightmare shortly and get back to my workouts I just thought that since it was hot outside I’d sit down and try to balance the federal deficit which is similar to the Small’s budget…..Good luck w/ that one Todd……LOL 

In the last six months (post stem cell)…..I’ve been getting back to my old ways….family life and futures planning. 

“Life’s chess match”…..so to speak. 

 

Kind of like a normal…Non-MS person. It’s a nice feeling not to worry bout health stuff……A very, very nice feeling. 

Remember…….we all have our crosses to bear……some are just a little heavier physically. 

 No worries right now. I got this.  

Be Well, 

Todd

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