[Raglet]

It is rotated in two directions - the inside of the foot rotates upwards (therefore the outside rotates downwards), plus the whole thing is turned inwards in an equinovarus deformity (equinovarus is just a fancy name for club foot).

my big toe (which incidentally I cannot move due to nerve damage) is pulled upwards and tends to cross over my other toes. All my toes are clawed up, including my big toe. My other foot is affected in a similar way, but not so severely. My left side is always worse than my right.

Actually, it's not just my foot that is twisted, my leg is heading that way too - my knee cap is starting to turn inwards, and my leg seems to be following my foot. My hips are perfect, so the twisting is definitely not coming from there, just this other silly stuff.

Weird stuff.

My question: I have had lots of nerve conduction studies, emg's etc and none of them have been particularly painful. Oh those two points in the hand that they do last in the hand are a bit ouch, but nothing major.

This time, I had horrific pain in one area - the part that showed all the overactivity in my muscles. The neuro stuck a needle in about mid shin, and I got a horrific neuropathic type pain that went down to my big toe. That was when he said there was too much activity going on.

The pain really was extreme, it was like the mose severe neuropathic pain I have ever experienced. I know I have had the same thing done previously and it didn't hurt. Heck my legs are so numb that I don't even notice the little needle going in.

Any idea why it hurt like this ? I was busy asking other questions at the time, so although I told him it hurt like $#%#@$# I didn't ask what the heck made it hurt like that.

thanks guys

raglet

 

[peonyprincess]

Ok Raglet, I can attempt to answer one question but I'm not sure about the other.

In looking at the picture of the foot and leg honestly concerned me as I have seen what I think it could be. I did some reading on some other sites before I answered you because I wanted to be sure of what I was saying and that I might be able to steer you in the right direction.

What I am seeing in your leg and foot and them from your description of your knee sounds like a Muscle Atrophy Syndrome. MAS is basically the wasting or loss of muscle tissue resulting from disease of disuse. An example would be someone who might be bed bound that doesn't do any range of motion exercises and the muscle tissue starts to lose its muscle tone and strength. Basically, you don't use it, you lose it. I have seen it in patients that are para- or quadraplegic because they are unable to use their legs or even arms. You also my find it in people with other disabilities or birth defects.

Now, I could be totally wrong about what it could be. I know that you use a motorcart and I am not sure if you ambulate on your own or not. Regardless, you need to contact your physician immediately as this is not normal and if it is MAS, by early intervention, there may be a way to stop it. Again, I could totally be wrong, but please get it checked out ASAP and let me know. Meanwhile there are several sites that you can go in and check out for yourself, just look up muscle atrophy.

Good luck and thinking of you,
Nancy

 

[Raglet]

hi Nancy

thanks for your post, but sadly it is not lack of use. I wish it was. I go to the gym three time for a week for an hour each time (rowing machine, cross trainer, reclining bike plus resistance training) and I also walk my dogs for 40 minutes a day. I am not fast, as I walk with a walker or two crutches, but I definitely walk the whole time while they run around the dog park off leash like a couple of maniacs hahaha. So I do lots of exercise - actually I think I get more exercise than most people who don't have anything wrong with them. I do have nerve damage in my legs due to sensori motor axonal neuropathy, so I definitely have some loss of function (eg foot drops on each side) but no muscle atrophy. Actually my muscle function is the opposite - I have way too much activity in my muscles as measured by the emg. I think that coupled with the nerve damage is what is pulling my foot and leg so out of shape.

I wish it was lack of use - then I could just work on it and get the function back. I just keep loosing more function despite all the exercise I get. I have had zillions of doctors looking at my feet, which is why I have just had the repeat nerve function studies.

but thank you for taking the time to think about it an post, I really appreciate it.

cheers

raglet

 

[KidsPT]

Hi Raglet,

I don't know that I can answer what caused the EMG to be so painful for you this time (they are typically painful unless you don't have sensation), but I did look at your picture of your foot and wanted to let you know it looks just like patients I work with that have spasticity (I am a Physical Therapist). I work with kids and a lot of them have botox treatments for the spasticity in their feet and hips to help their AFO's fit better and improve their gait. It is successful in the majority of them. For the ones that are particularily tight at their ankles and knees we will do serial casting after the botox injections to increase the ROM/reduce the contracture. It might be something to ask about if you cannot get your ankle to a neutral position. Good Luck to you and hope this helped a little.

Nancy

 

[lazylegs]

Hi Raglet,

My big toes keep trying to cross over the other toes. One day in yoga the instructor zeroed in on the feet. One of the movements was to stand and lift the toes upward. After doing this every day since then I found the counter stretch is enough to pull the toes back into their proper positions. Since you can't pull upward with your own toe muscles I wonder if standing (the body weight does make a difference) and doing it with your hands would work.

Also my ankles tend to get really stiff. Applying heat and then rotating them in very large circles in each direction helps keep them looser. There again you would have to do it with your hands.

I had a similar surprise when I had my reflexes tested this last time. The last 4 years there has been no reflex response in my arms or legs. On my last visit I explained the latest symptoms to my neuro. Instead of sitting directly in front of me to check my reflexes he stood way back. My leg just shot out like a bullet. He said that is normal when the muscles is overactive.

Also normally when the doctor lifts my leg and drops it when I am laying down it just flops to the table like a wet noodle. This time the heel dropped and caught on the table and the knee was bent upward. I had no control and he actually had to push on the knee to lower the rest of the leg.

These spastic muscles seem to have a will of their own. Keeping them stretched and relaxed is all we can do. Maybe one of the treatments will relax your muscles enough that in time you could get you foot properly aligned.

Take care,
Lazylegs

 

[Raglet]

hi Nancy (Kids PT - we've got two Nancy's posting on this thread :lol:

Thanks so much for your comments - after the nerve conduction studies/ emg tests on Wednesday it seems spasticity is a hot contender as there is way too much activity going on in my muscles. If I really really concentrate I can relax the muscles my foot briefly, but as soon as I take my mind off it then it just jumps back into it's 'normal' position as in the photo. But, when in a relaxed state my foot sort of 'jumps' in a weird way, in the direction of it's regular deformity. It's like it is trying to get back to it's usual position. Actually it is a big like one of those bobble head things, my foot 'nods' in the direction it wants to go.

My OT put an ankle strap on my AFO on the left side which really helps, but my leg still fights it so it would be good if I could do something about that so I don't fight the splint. It would also be good if I could get rid of that hideous ankle strap, it is so ugly but I guess that is asking too much :lol:

My muscles up my legs are getting really tight and often painful, but I just get out cream and massage it which really help. There is one muscle in paticular on the left side of my left lower leg that really gets sore. I use peppermint antiflam cream, but I am sure that it is the actual massaging and working the muscle with my hands that is what is really helping rather than the cream (but the cream smells divine, so it is all good). I stretch my legs at the gym, but really, it feels like my legs are over stretched most of the time.

Lazylegs - I will focus more on making sure that I put my good through a good range of movement, at least when it is out of it's splint. It spends most of the day splinted so it is in a much better position. I have been wondering about getting a night time splint for it so it can be held in a better position while I sleep. When I sleep, my heel points up towards the roof and the top part of my foot around my toes lies on the matress, it is really weird. Maybe sleeping with it in a better position would help it.

thanks guys

raglet

 

[JoD]

Get yourself to the nearest Physiatrist

http://www.aapmr.org/condtreat/what.htm

Alex's physiatrist is our ace in the whole. He looks at the whole patient and not a single organ system.
One of the important things to know is if you can physically bring your foot back to alignment. If so that is a good thing. If not you may be looking at a CONTRACTURE
http://www.nlm.nih.gov/medlineplus/ency/article/003185.htm

Alex's spasticity is caused by brain damage from prematurity and other complications during the first 3 months of his life that he spent in the NICU. I know you have CNS involved lupus and I wonder if it effects if it effects the motor strip of the brain
http://pegasus.cc.ucf.edu/~Brainmd1/strip2.html

Alex is most in danger during his growth spurts ( I think your done with that, right:wink2
when his muscles grow slower than his bones.

As an infant/toddler,Alex was basically curled up into a ball that had to forcefully stretched out to do any sort of daily care. We did Botox when he was three. The first time lasted 8 months and did wonderful things for Alex...he took his first assisted step using a walker. The walker was the first time he stood as well. We tried Botox again but the effects wore off in 6 weeks,,,kid is weird and built up immunity to Botox

The severity of the spasticity was causing his hips sockets to form to shallow and the ball of the leg was being pulled out so he couldn't walk. We could have done lots of muscle surgeries, that would need to be repeated as he continued to grow but decided for a more permanent solution. He had SDR surgery when he was 4 years old. It was the most difficult and best decision we made for Alex. Ask and I will give before and after descriptions.
http://intermountainhealthcare.org/xp/public/documents/pcmc/dorsalrhizotomy.pdf

Other options that are long last but not permanent if the results are not good or if there is a reaction to the medication is the Intrathecal baclofen pump
http://www.thekittles.com/the_baclofen_pump.htm

So there are lots of options out there but first get yourself to a good PMR doc.

Joanne

 

[Raglet]

hi Joanne

I am not even sure that we have physiatrists, whatever they are. Are they a doctor or something like a physiotherapist (have a great one of those).

I will check out all your links when I have more time - just got back from doing the groceries and now I have to walk the dogs. I think I have some minor contractures as when my foot is in a neutral position it yanks up my leg, but I don't think it is anything too major. I spend most of the days in a splint which improves my positioning but it is still not totally normal (foot leg fights the splint though the extra straps the OT installed have really helped).

I have been thinking the same thing about my cns problems - my neuro thinks that the problems with my hand rolling up into a fist is caused by my brain, and I think that it's likely that my foot problems are too.

gotta go, my daughter is glaring at me, I booted her off the computer to check back on this thread. I will be back and read properly tonight.

thanks a bunch

raglet

 

[alexbelfast]

hi this is just a thought my little nephew ws born with hyrrocaphylis causing him life long learing difficulty
but he also has a problem with his muscles being to tight
but the dr has njected him with botox and i has loosened his muscles
so maybe look in to that