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  #31  
Old 11-01-2016, 12:30 PM
Suebee Suebee is offline
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Location: Houston, TX
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Larry, thanks for biotin info. I haven't started biotin, I think because of small obstacle of ordering on line and put in caps, which has some cost and unsure if it will benefit me. i find it hard to jump in with both feet. I follow posts here closely about how others like it. But the science you cite gives me something to hold onto. i will keep watching.

With regard to insurance coverxge for FES- i have a major insurer and pretty good coverage. i reviewed my contract and in a nutshell, my insurer considers FES experimental or unproven for mobile MS patients. (it lists conditions FES is approved, and strokes are approved for FES). i was perturbed and checked out other major insurers to compare coverage. But several other insurers had similar language for FES coverage. i am going to take a shot in the dark and guess coverage at a FES clinic run by a MS expert with "unpublished" data supporting its use in MS patients might be clearing the way for insurance coverage. i will contact Gary's clinic and inquire about cost/coverage FES for me and protocol they use for out of state patients (i am in TX). i will report back to you all what i find out. i recall there are 2-3 other places in the US that do FES for MS. in the meantime, Gary- keep us updated on your progress and general thoughts about it. we wish you best of luck!

TM, would also love to hear more about what muscle groups you worked on, how much time a day and week, and if you combined it with deliberate contraction or exercise.

Let's get FES more assessible!
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  #32  
Old 11-02-2016, 06:17 PM
garyp garyp is offline
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Default Latest report

jjmagpin - you asked "...how did you find out about the site that provided the FES sessions?"; was word of mouth in a support group that I attend.

Suebee and others following this post: Have had two more sessions this week, Monday afternoon and this morning (Wednesday). Have two more sessions to go (next week).

Some results: I play indoor soccer for an hour about once per week. Played last night for the first time since starting FES...and was curious if I noted any difference. I played better last night than I have for a while This is possibly because the temps and dew point are now much lower than they were over the summer (I do play over the summer months) so don't want to jump to a conclusion - it could also be because I was just having a good night, which happens from time to time. But, I did (as did my team mates) notice that I played better than I have in a while.

I am participating in FES in part to see if helps me with long distance running I do over the cold winter months. The mild spasticity I have kicks in after about 10 miles or so which really constrains me and takes up a lot of energy.....I have a goal of running a marathon (call me crazy) this winter, and want to see if FES can give me enough relief from this issue to help me achieve longer distances. Will be mid-January before I know that, as by then will be at the higher distances. That though will depend on how quickly it gets cold here on the US east coast - the sooner it gets close to freezing point the sooner I will be able to begin longer runs to build up to a longer distance.

Suebee - am curious as to what you hear back from the clinic I go to as far as insurance and how they justify to insurance companies using this technique on people with MS who are still able to walk independently.
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  #33  
Old 12-15-2016, 06:00 PM
garyp garyp is offline
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Suebee et al:

My apologies for not reporting back sooner on this.

My planned FES sessions completed a couple of weeks ago - wanted to provide some time between the last session before reporting in to allow things to settle down.

The good news - I am most definitely stronger. I sensed that myself anecdotally, was just more stable - and when I play indoor soccer am accelerating faster and making few subtle errors. My last session with the therapist was another full evaluation - a variety of physical tests such as walking on your tip toes, running forward, running backward and many others. My overall score was higher than when I started.

The not so good news - have noticed that while I feel stronger, my muscles are fatiguing faster. And I am feeling more physically tired after exercise.....and have had a few instances where by late in the PM at work I feel like I would just like to lie down and go to sleep (this has not happened for sometime before now).

I am going to continue as normal for the next few weeks to see if the muscle fatigue and occasionally feeling very tired late in the day reduce and go back to normal.

The reason I did FES was to help me with the distance running I do over the cold winters. Will be getting to the longer distances within the next few weeks (is finally consistently cold enough here on the east coast of the United States) so will report back some more when I reach that point to see if I conclude that FES did help with distance running.
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  #34  
Old 01-23-2017, 10:11 PM
garyp garyp is offline
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Suebee et al:

So, for my last post - expressed that while I was definitely stronger my muscles were fatiguing more quickly....and that I would report back again after I hit the longer running distances as the winter progressed.

I am pleased to report that the muscles fatiguing after exercise has gone away and returned to normal.

I am also pleased to report that I have been able to reach longer distances better than in previous years - ran 21 miles about 3 weeks ago now, which I don't believe I would have been able to do last year.

So, FES has definitely benefited me.

Next objective now is to reach my goal for the winter of running a marathon (which is the reason I did FES to give me a little more endurance in the legs) - planning to run one this Saturday in Peninsula, OH. The only thing that would stop me is that I wish it was going to be a little colder this weekend - as of right now the forecast is for 31F as a high during the day, and 24F overnight Friday into Saturday. There are other marathons in the coming weeks - but looking at longer range forecasts no sign yet of a colder front coming in so this Saturday maybe my best opportunity

Let me know if anyone has any specific questions on my FES experience.
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  #35  
Old 01-24-2017, 06:49 PM
Suebee Suebee is offline
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Gary,
That is wonderful news! Congratulations and good luck on the marathon.

I guess I'm curious as whether the clinic explained if it was targeting fast twitch fibers or slow twitch or both. Did you notice if you received different strength of zaps and duration in one sitting? Was the FES restricted to major muscle groups or included tandem smaller ones. Did you do exercise while getting stimulation? And will you be able to do maintenance FES with home unit? Thanks for all your info!

Once again, congratulations and good luck!
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  #36  
Old 02-13-2017, 07:37 PM
Suebee Suebee is offline
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Default tongue electric stimulation for MS

I wouldnt expriment with this tongue electric stimulation at home even though the limited trial says it improves rehab and cognitive of MS patients. Strange too i think that the one of the first trials especially for MS is the tongue.
link to good overview of how it works http://www.dailymail.co.uk/sciencete...e-balance.html

link to marketing of device/ trial 2017 http://www.heliusmedical.com/images/..._2_7_FINAL.pdf

Last edited by Suebee; 02-16-2017 at 07:24 PM. Reason: add links
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  #37  
Old 02-13-2017, 07:53 PM
garyp garyp is offline
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Join Date: Oct 2010
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Default Responses to Suebee questions...

Sorry for the delay in response Suebee...read it, intended to respond but then completely forgot about it. Can I blame that on MS cognition issues

To answer your questions as best I can...

Fast twitch vs. slow twitch - sorry, not sure which if any of these two were targeted, but will ask at my next session sometime in March (I think)

"different strength of zaps and duration in one sitting" - no, was all consistent across one sitting.

"Was the FES restricted to major muscle groups or included tandem smaller ones" - in my case, major muscle groups including glutes, quads, hamstrings etc..

"Did you do exercise while getting stimulation?" - yes, rode the recumbent bike that was a part of the machine. The level of resistance though did increase from session to session - started off with low resistance in the first session, then increased to a much higher level in subsequent sessions.

"And will you be able to do maintenance FES with home unit?" - that was an option, but for now elected not too pursue.

And as far as an update on Marathon - did run one in OH a couple of weeks ago now. The winter has been relatively warm this year - so was not as cold as I needed, so ended up taking about 7 hours vs. the 4.5 to 5 I had expected. But, I finished!
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  #38  
Old 02-16-2017, 07:24 PM
Suebee Suebee is offline
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Thanks for the info Gary!
My guess is that it your clinic has "standarized" its delivery of the FES to maximize the benefit in a visit period. I'm guessing that this was likely determined by the goal of the majority of MS patients in the clinic, i.e. regaining walking. I think if you cleverly put out some observations you've made about your muscle strength vs. endurance on your runs, and your hypothesis that you need to work on endurance (fast twich?) that your Doctor could tweak the frequency or muscles targeted to "customize" the FES even more for you. Good luck with this, it is so encouraging to know you did get some good results!

FYI, I haven't posted info about the clinic's insurance coverage because in truth I dread spending several hours on the phone with my insurer inquiring about my policy. I do it enough.
But I will call the clinic and my insurer let everyone know how FES is covered by my US private health insurance,... i just have to get my "endurance" up.
If it is covered, I would consider an FES vacation (fun!) and maintenance at home.
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  #39  
Old 02-18-2017, 07:45 PM
AMFADVENTURES AMFADVENTURES is offline
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Love this thread and genuinely appreciate you guys keeping it going, in fact, my level of interest has increased due to a recent setback that has left me particularly weak.

Suebee, here is a link to what I thought is a good, short explanation of the difference between slow twitch and fast twitch muscle fiber types. https://www.acefitness.org/blog/5714...-muscle-fibers
You will see there are actually 3 types of fibers, 1 slow twitch (type I) and 2 fast twitch (type IIa and IIb). In most cases a muscle is composed of all 3 types although, depending on the specific muscle, one or another type will likely dominate. Also, one of the significant differences between muscle fiber types is the unique chemical reaction required to activate each fiber type.

Since fes is an electrical impulse generally discharged into a larger muscle group, I suspect it would indiscriminately target all three muscle fiber types. The question in my mind is, when a muscle cell is stimulated electrically, is it causing the cell to contract from the normal chemical reaction or is the cell contraction a direct response to the electricity thus by passing the chemical reaction? In either case the cell would likely become more robust from the exercise but in the latter case (direct electrical contraction) the cell would not adapt to an increase in the chemical reaction requirements. That might explain Gary's muscle fatigue following his fes treatment. The fact he overcame that fatigue may simply mean the fes enhanced cells did eventually adapt to the increased chemical demands being placed on them. Horribly interesting if you're into this kind of stuff although possibly irrelevant here.

At any rate, as I started out by saying, I've recently suffered a significant setback in terms of strength and fes is one of the things on my list to aid recovery. I know of a sports trainer/physiologist who may have the equipment and knowledge to undertake fes therapy. He may not be as expensive as a physical therapist because he runs his place like a studio, multiple clients doing different exercises on different equipment all at the same time, each for their own particular concern. But before I do that, I'm going to try some basic orthotics (from amazon) to address some of the weaknesses, specifically one or more AFO's and possibly a wrist brace.

One more thing Gary, I'd be interested to know if you find the gains from the fes therapy to be self sustaining over time? Oh, and also, congrats on completing the marathon!!!

Last edited by AMFADVENTURES; 02-18-2017 at 07:57 PM.
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  #40  
Old 02-24-2017, 05:22 PM
jjmagpin jjmagpin is offline
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Join Date: May 2015
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Default Touch Base

OK...it has been some time since I have been able to comment on the site. I would like to start by saying....I hate you people! (LOL)...just as I think that I am starting to make some progress, I hear that Gary finished a marathon, AMFAdventures did this...SueB did that....
you guys rock!
Gary..I have run 2 (marathons)...20 years ago, a 1/2 and a bunch of 10 milers..(use to love it) they were all a big deal for me and I certainly did not have MS at the time...dude...I am unworthy...
AMFadventures/SueB...without you guys posting about FES, I would not have found a program that Brock University is doing....please keep posting this stuff...it is a big/big help....and this doesn't even include all of Dave's travels!
OK..I am done being nice...back to my old self
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