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Lost Ability to Move Legs or Walk?

Discussion in 'Neurological/Neuro-sensory' started by Dale, Jul 26, 2009.

  1. Dale

    Dale

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    Has anyone else lost the ability to move their legs or walk? The first time it happened to me, I was in my doctor's parking lot. I turned off my car, opened the door, and couldn't move my legs out of the driver's area.
    After sitting there for quite a while and honking my horn for help, no one heard me, I was finally able to pick up each leg with my hands and put it on the ground, then straighten my body. Then slowly shuffle into my doctor's office. When I told him about it, demonstrated it, I got "the stare," and no response.
    It's happened quite a bit since then, but now that I am over the freak-out effect, I either just stand or sit where I am or kind of shuffle to a safe place. Pretty weird, huh?
  2. Jody

    Jody Senior Member

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    Hi Dale,

    Welcome to the forums.

    My gosh, that must have been scarey. I haven't had that particular experience, but I know there are other folks who have had -- I guess it would be a form of temporary paralysis? -- in various parts of their body.

    Lovely reaction from the doctor, wasn't it.

    Does this happen to you often? Does it take long to pass?
  3. Cort

    Cort Phoenix Rising Founder

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    I have heard of that before - it almost seems like a spell comes over you. I know someone (Dan Moricoli at MECFSCommunity) who loses the ability to speak clearly. He goes from a robust speaker to someone whose vowels stretch on and on. He goes from walking to having to use a cane. It almost seems like a stroke but it does pass.

    I know someone without ME/CFS who was having anxiety attacks; one day he couldn't get out to the car - could not move his body.

    It really sounds like the system short circuits - blows a fuse temporarily. It could happen to everybody to some degree- instead of not being able to move at all they can't move correctly or easily; the circuit's just blowing at a different level.

    Glad to hear you're handling it so well. I hope others can chime in.
  4. shiso

    shiso Senior Member

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    I've been sick with ME/CFS for about a year now, and one of my most dramatic symptoms is my diminished ability to walk. About one month into my illness (when I still didn't know what I had, could still walk and hadn't experienced cognitive problems yet), I was in a museum and suddenly couldn't continue walking. I had to sit, rest, and drag myself into a cab home.

    Since then, I've had trouble walking. I can now walk for up to about 20 minutes straight on average (if it's slow walking with stops and rests, I can walk for longer) but after that, it's like my brain can't get my body/legs to keep going. It's not fatigue or anxiety that stops me; my body just won't move forward after a certain point. It must be neurological (?)
  5. Jody

    Jody Senior Member

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    Hi shiso,

    Welcome to the forums.

    That is a dramatic symptom, and a most disturbing one I'm sure.

    I'm afraid I have no answers. A few questions, though. :)

    When you found you could no longer walk, did your legs go out from under you? Were you still able to stand? Were you light headed or dizzy? Any numbness or tingling in your legs? How did your head feel? (Besides shocked, I mean.:))

    Certainly could be neurological. Unfortunately, like with so many aspects of CFS, it's hard to say for sure whether it is or whether it's something else, or both. **sigh**

    Have you come across any treatments, supplements or whatever that have helped you at all?

    You are early in the CFS journey and from what I understand because the condition is so new, you have a good chance of recovery. And though there are a LOT of frustrations in the medical, research, political realms, it is also true that more is known than there was, say 17 yrs ago when I first got sick.

    You wouldn't believe the nonsense and vagaries out there at that time. Or going back 20 - 30 yrs or more, as some of our members do, the treatment they received was predominantly ... bizarre.

    I hope you will find many ideas here that will help you to come back to health again.
  6. Freddd

    Freddd Senior Member

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    Hi Dale,

    Well, 8 months ago I developed footdrop and an inability to control the lower half of my leg or to feel where it was. This kind of loss of motor control is often caused by subacute combined degeneration. I also would suddenly loose control of the muscles in my leg and just drop. It coulod happen sudenly with either leg. If it is subacute combined degeneration, you would likely have paresthesias and developing numbness, sore tight muscles and other symptoms. It doesn't come out of ther blue. It's involved wioth the demyelination of the posterior colomns of the spinal cord caused by methylb12 deficiency.

    Since then I have regained full control over my feet, toes and legs. I know where they are and have normal motor control over them. I can trust my legs and everything to work well enough I'm redoing a roof this summer. I've healed it with an agressive methylb12 injection series. Smaller amounts healed most things but not that. One man I know has been able to get up out of a wheelchair, discard the walker and orthoses that were prescribed for his condition with similar b12 therapy
  7. shiso

    shiso Senior Member

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    Thanks a lot Jody, for the warm welcome and encouraging words.

    The walking thing is weird and limiting. It definitely feels like a brain thing; my legs themselves don't go weak or numb or tingly; there's just a refusal to move after a certain point. I can will myself forward a little after that point, but it's really challenging. I also have a mild case of POTS, so I get light-headed sometimes, but it's separate, I think. My way of dealing with it is staying within my limits and not walking to the point my body stops me.

    Agreed that so many symptoms seem hard to explain. Other than my main problem (fatigue, fatigue, fatigue) I have a lot of the brain type symptoms to varying degrees (some mild): sensitivity to light, sleep disorder, POTS, some cognitive problems, and headaches.

    I haven't really come across helpful treatments yet, though I've felt marginally better than when I first got sick. I've been trying the Martin Pall antioxidant protocol that I buy online from Prohealth, but I can't really tell if they are helping.

    I'm in Japan, and their approach to treatment here is very minimal (vitamins, sleep meds, rest) - nothing close to the range of treatments that people seem to try in the States and Europe. I'm originally from the States so I'm considering going there for treatment, but so far I haven't come across any one treatment that's popped out at me to merit the travel and the haul. We'll see...:eek:

    I can't imagine how things must have been 20 years ago! While a one size fits all cure seems distant, I am staying hopeful that I'll come across something promising that might help. Thanks again for the encouragement! :)
  8. Angel

    Angel

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    an island in Florida
    can't walk experiences

    I have this on occasion, but it is always a posture response. Sometimes after I have had a long drive, when I get out of the car, I can't put all of my weight on my legs, or walk. I have to just stand there and eventually I can put the weight on the leg in trouble, and walk as if nothing was wrong at all a minute earlier.

    I have found that robotic massage on the iliacus and psoas muscles has all but eliminated that problem.

    On occasion if I have therapy on my back, and I've been laying on my stomach, I cannot sit up or walk. This has actually happened a couple dozen times in a couple of years.

    Usually I cannot move my hips, and if I just keep working at it, eventually I can slowly roll over and can start to get into a sitting up situation. From there it may take 5 more minutes to be able to sit up straight and begin to put weight on my legs.

    Maybe another 3 -5 minutes later I can walk, but have a lot of pressure and pain in the lower back. Twenty minutes later I could probably dance, but at that moment, if there was a fire, I'd be in trouble.

    I do take vit B supplements, so I don't think it is a deficiency problem, but a problem from past injuries to the back.
  9. bettine

    bettine

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    Hi all,

    I don't know if this is a comfort for you or not:

    In the year leading up to getting full blown ME, I found myself unable to carry on walking a few times and had to sit on the street for a while before walking on. And the first year of really being sick and developing all the symptoms, I couldn't walk at all, or stand long enough to take a shower. Something felt very wrong with my legs.

    But after a year it got better, and I started to be able to walk again. So maybe the same will be true for you, that it will get better ............

    I regained the being able to walk completely, and it stayed like that.

    Ofcourse not everybody is the same, but don't loose hope that it might be a passing symptom.
  10. Jody

    Jody Senior Member

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    shiso,

    Maybe you will come across some helpful tips here on the forums.

    The upside if we can call it that, about having such huge variation in each individual's own syndrome of symptoms, is that there are any number of suggestions you'll find, ranging from particular vitamin supplements, to dietary changes, to alternative therapies, conventional medicine, naturopathy, homeopathy, energy treatments, you name it.

    Some of them just might make a difference for you. Here's hoping. :)

    Angel,

    Long time no see. :)

    That sounds tough. I haven't heard of robotic massage. Can you tell me more about it?

    Bettine,

    So this not being able to walk is not as rare as I thought. Here are 4 of you who've experienced it. It would be nice if we knew the cause and cure to this strange symptom.
  11. bettine

    bettine

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    Hi,

    well, the thing is: back then (early nineties) I had a neurologist who "believed" in ME, and many patients went to him. He was great.

    Among other tests, he did an EMC and something was wrong, he said it looked like some sort of infection of the muscles in my legs. He considered taking a biopsy, but then decided against it, because he didn't want to make any damage with invasive surgery (though very small, I would think, for a biopsy). If I had known all the problems and things that came up later with doctors not believing anything is wrong, or with getting disability pensions, I would have insisted more strongly on taking the biopsy.....

    By the way, this is also to tell you that sometimes things, doctors etc. were not always so bad in the '90's. Over here in Holland, at least, it was better than it is these days.

    Even doctors who didn't have a clue about ME, would at least give you the benefit of the doubt. Right now, they are very clear on it: you perpetuate your symptoms yourself, and CBT and GET is the answer. Very difficult.
  12. Lisa

    Lisa Senior Member

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    Hello Shiso!

    Sorry to hear about the walking trouble.

    I have been doing a supplement program similar to what Marty Pall's formulas provide. About two years ago I ran across his work. Back then, he didn't have his own formulations out in the same way he does now.

    Also at the time, Dr. Grace Ziem worked with him to develop a supplement program she would advice MCS/CFS patients to follow that was based on his work. http://www.chemicalinjury.net/html/chemical_injury_treatment_ingr.html I focused on tailoring my supplement program to vitamins/dosages listed in part 3 of her treatment only as I could not afford the nebulized glutathione or b-12. Everything I used was purchased from a supplement store, not compounded at a pharmacy like she suggests.

    Anyways, I wanted to let you know that the antioxident/NMDA calming program did seem to work for myself and my partner Jeremy. At first it became noticeable about 6 months after starting it and realizing that not only had we stopped our downward slide but we seemed to be slightly better.

    Another year after that (18 months total) and I would estimate we had regained about 10% of our energy/wellness. Considering we started the supplements at around 20% or less total capacity, 10% improvement was absolutely AMAZING for us.

    Long story short (too late, lol) - try to give the anti-oxidant supplements about six months to see if they do anything for you. If you get feeling worse then disregard that, but as long as you can afford it and are not getting worse then you might try giving it some time.

    With the anti-oxidants it can take awhile to see the difference because you are fixing things from the route of not letting them get as broken by free radicals/toxins as they otherwise would, thus allowing more progressive healing to take place. But who knows? Maybe you'll get a lot of zip, bang, wow types of stuff going on with them! :D

    If you do get some zip, bang, wow happening then please let us know here. I am very interested in finding out how effective his personal formulation is. If after six months you still have nada, well then we will know something about his formulas from that too. :)

    Good healing!
    Lisa :)
  13. Angel

    Angel

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    an island in Florida
    robotic massage

    Hi Jody:

    Sorry I disappeared for awhile. Rough week...


    Yes, I can tell you about the robotic massage. would you like that to be a new thread? There is a lot of information about it.

    Basically it looks at the musculoskeletal system as a series of cables (muscles) working to operate a variety of levers (bones). When one of the cables shortens, it affects the entire system and causes pain in the joint and in the muscles, and the tissue surrounding that joint.

    TIf the muscle is hard, it is shortened. If you move against a shortened muscle, it hurts. Range of motion is lost and the shortened muscle has lactic acid in it that causes it to be tender to the touch. If you move quickly or are pushed quickly against a shortened muscle, you will tear the muscle or dislocate the joint.

    The lactic acid andwaste products in the shortened muscle cause chronic pain and skeletal and neurological disorders.

    The robotic therapy lengthens the shortened muscles ridding the muscles of toxic waste and restoring normal blood flow, allowing the muscle to relax and lengthen to its normal state.

    The robot was developed by an engineer in Florida who has Fibromyalgia. You lay on a table. The robot arm comes down from above and applies pressure to the tightened muscle. It is very sensitive. If the muscle tightens and fights the robot, the robot backs off a fraction of an inch. If the muscle lengthens and relaxes, the robot pushes a fraction of an inch more.

    For me they started off on the iliacus and psoas muscles. As the robot lengthened those muscles, I could feel all of the muscles in my back readjusting. Over time, certain chronic pains and muscle weaknesses lessened or disappeared.

    An example would be getting out of the car and standing there until I could put weight on my leg. I don't have to wait anymore. Now I just get out of the car and walk.

    I had a lot of chest pain, but it wasn't a heart problem from a muscle problem. Lengthening the Pec major and minor muscles relieved that pain.
    Working on them and also areas on the top of the shoulder by the neck reduced certain types of neck pain and headaches.

    Foot pain was relieved by the robot lenthening the muscles in the calf and bottom of the foot.

    The robot can be purchased as a portable unit, a joystick unit or a professional unit for a Doctors office. Prices are $2,500, $7,500 and $21,000.

    My Doctor initially sent several patients to another clinic to try this therapy. I could tell by the end of two treatments that it would be of help.

    Eventually he purchased two units and I began therapy. In October I tried to do therapy 2 - 3 times a week, and I progressed very rapidly. I have experimented by skipping a couple of weeks, or by going only once a week. I don't have good results then.

    He would like me to do therapy every day. The reason is, you only work one body part at a time. I would love to have one at home and have a month long concentration of daily therapies to build upon and see just how much progress I can make.

    Initially the movement of the muscles lengthening causes some discomfort. After several therapies any discomfort during the treatment ended, and it only helped to reduce my pain level and increase my activity level.

    Obviously my goal is to have my own unit so I don't have to waste time driving (45 min one way) pay for gasoline, and spend energy on the whole experience of getting to the appt. Tampa Bays traffic leaves something to be desired...

    I have the goal, just not sure how to reach it right now. What I do know is that I have made a lot of progress with this therapy. The robotic therapy along with Prolotherapy are what allowed me to get off of the pain medications.
  14. Lisa

    Lisa Senior Member

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    A ROBOT!!! Neato! :D That is so amazingly cool!

    And I'm definitely jealous! I would love to have some robot giving me a massage - that is so neat! Technology amazes me. :D Now all you need is a shiny silver body suit and you'll officially be 'In the Future'! Totally Sci-fi stuff here. Its great! I'm a geek! lol

    Lisa :)
  15. Angel

    Angel

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    Hi Lisa:

    Yes, his trainer has named him Ernie. Initially I did feel like a guinea pig, but I've learned to keep an open mind. Some of the treatments that I have had in the last 20 years I thought were quackery, but the next day - -- oh my! Results!

    So, I have learned to open my mind and not be so skeptical. I have progressed a lot further than I had ever imagined with the robot.

    I believe my Doctor (the car accident injury Doctor) seems to understand my willingness to explore, coupled with the discipline to endure to prove to myself whether or not something will bring me to the next level of health.

    He has allowed me to be on the robot, or rather under the robot for 3 hours at a time instead of the normal 30 or 60 minute treatment, and often as I can drive down to the office. He jokes that if he would let me I would bring my lunch and stay all day. I would except then I would have to get up before noon! Not gonna happen...

    One day I had to bring my laptop in my roller case in because of a business meeting after therapy. The hot sun down here pretty much melts anything in your car.

    All of his staff were sure I had finally brought my suitcase and was moving in.

    A woman in the waiting room asked if I was a drug rep, nodding at my rollerbag. I said, "no, I'm a mortgage broker".
    She said, "Oh, so you have your clothes in there too!"

    About your man. I'd just marry him and pray that God will reward the two of you with a financial solution to make up the difference. You both look pretty resourceful to me...

    Blessings,
  16. Lisa

    Lisa Senior Member

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    Hello Angel!

    That's great that your doc lets you stay on the machine that long. Some time you should try bring a sac lunch, maybe a small blanket and pillow, and perhaps a stuffed dog or small (really small) potted plant with you just for the laugh. hehe :)

    I've certainly had that urge to blow caution to the wind and marry him anyways! I don't think I have enough faith in the universe providing for us if we did though. Sort of like, it provided us with the only decent case worker we have had and at just the right time - maybe that was it providing? A little too theological for me to really get a good grip on the ideas. But it did bring a smile to my face to hear/read you saying that. Especially the way you worded the first part "About your man." hehe, makes me giggle :)

    I'm just starting my foray into the more alternative healing arts. Been working on the EFT this last few days for the first time - having some interesting results. Also at the suggestion of a friend, I am trying to locate a decent acupuncturist locally to try and get mine and Jeremy's detox systems moving better. Both of these are the sort of treatments that push my comfort boundary for believing if they will work, but I'm closing my eyes and taking the plunge!

    Glad Ernie can help you out Angel. It really is completely amazing to me that we are now in an age when a robot is employed for such tasks. Just amazing.

    Lisa :)
  17. Angel

    Angel

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    HI Lisa:

    I like your idea of bringing a lunch. Maybe I'll call dominos pizza and have them deliver...

    I understand your caution, and caution is a good thing. I finally came to the realization that my "normal Doctors" did not have anything for me except drugs to cover symptoms, but none were interested in finding or reversing the cause.

    That is why I have gravitated towards the alternative therapies. They are what has moved me forward in health to reclaim what was lost. Just use your common sense and read alot.

    I do believe in God and through the years have prayed for guidance and direction in leading me towards treatments and Doctors that will bring healing to me. I believe he has done just that.
  18. Lisa

    Lisa Senior Member

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    LOL! I love that idea of ordering pizza Angel! That would be great :D
  19. shiso

    shiso Senior Member

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    Hi, Bettine,

    Thanks so much for sharing your story about your experience with walking. It is very encouraging to hear. I can walk a little further than in the beginning, so I'm hoping I will continue to improve, as I love walking and exploring...

    Hi Lisa,

    Thank you for your comments about the Ziem/Pall supplement protocol. I'm glad they helped you and Jeremy. I've been on the Pall supplements for about five months now. I haven't had any dramatic improvement, but they also haven't made me worse, so I'm going to stick with them for a while - I'll take even marginal improvement if I can get it. Will definitely let you know if I experience noticeable improvement!

    best wishes,
    Shiso
  20. Jody

    Jody Senior Member

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    Bettine,

    It was so much better when the doctors treated this like a medical condition (which it is).

    There is a ridiculous stigma surrounding CFS with many of them now.

    We will just have to get better in spite of them.

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