[Raglet]

I took a photo of my feet today. Actually, the one wearing a black sock I 'positioned' so you could tell which direction my body is pointing in (it actually points inwards like my other foot, but to a lesser degree).

Today I lost some more strength in the outer side of my left foot, which means the strong inside of my foot pulls my foot way off line as there is nothing to pull against on the other side of my foot. My doctors tell me limbs are kept in place by the muscles pulling against each other. This is due to my motor neuropathy, coz the nerves that send the impulses to the muscles are basically dying off.

Well, my left foot is now so distorted that it pulls and cramps up the side of my leg and is really uncomfortable. For the first time today my AFO (ankle foot orthotic) is no longer enough to hold my foot in position, so I guess I will have to go the next step and get a more substantial brace for my leg.

here's the picture ....... drumroll ........ I pulled up my jeans on one side so you could see that leg/foot and how it twists .....

oh well, not much I can do about it - my hands are going the same way too, it's definitely a ******.

sorry to me moaning so much lately - I am seeing my rheumie on Monday, so I will let her know that my foot has got worse then, and get her to refer me for a more substantial brace.

raglet

 

[lazylegs]

Hi Raglet,

My right hand has been doing the same thing for about a year. The doctor says I have lost muscle on the left upper side of the arm so the right side has more pull. I don't feel anything in the hand but the shoulder pain wakes me up at night. During the day I force the hand in the opposite direction and it helps stretch the muscle on the outside of the arm. Putting that arm behind my back forces the shoulder into another position that helps also. Heat helps relax the stronger side somewhat too. I wear a brace but as time goes on I will need something more rigid because the muscle is stronger than this flimsy brace.

Good luck with your appointment.

Take care
Lazylegs

 

[Raglet]

I have the same thing in my hands too, and my fingers are curling up into a fist as the nerves going to the extensor muscles are pretty caput. Actually weakness in my hands is the oppposite to my feet - my hands are being pulled outwards, but the twisting is in the same direction as my feet - the rotational twist is in the same direction as my feet (outerside being twisted down under my hand/foot). My thumb is being pulled in under my hand. I got what I am calling my 'spiderman gloves' from my physio on Monday which help me unroll my fingers which are really helping with the keyboard. I use resting splints at night to try and maintain good position, but they don't seem to do much.

The unremitting cramp in up the side and back of my leg is pretty annoying but not much I can do about it because it is being caused by the position of my foot. I guess they will need to give me a stronger brace that will properly position my foot, but my understanding is that it will have to come up above my knee to do that. I currently just use foot drop braces (I have a foot drop as well) that finish just below my knees, but although that is still working on my right leg in terms of positioning my foot, it just doesn't work on my left leg anymore. I think I probably need to look at a night time splint as well for my foot to keep it in a good position. I am worried that it will end up in a position where walking is impossible - well walking already is pretty hazardous.

oh well, again not much I can do about it, once I loose more function I never get it back. I will just have to wait to talk to my rheumie on Monday though I will try and book an appointment for the splints sometime next week. Not much point seeing my neuro, all I can do on that score is wait until the nerve conduction studies.

cheers

raglet

 

[JoD]

Raglet,
When I looked at your foot. I noticed your big toe was hyper extending. My son has spastic quad CP and uses a walker for short distances. He wears articulated AFO's, so he can bend at the ankle
There came a point where he was complaining about knee pain and after about 2 weeks he could no longer stand. We were at the brace maker for another reason and asked if they would look at his AFO because of the pain. Turns out his big toe was hyperextending ( it always has on a on and off basis but it had become continiuos) The brace maker but a peice of velcro around the front of the brace ( toe area) to force the toe down. It took another week before he felt comfortable standing but he is doing just fine now. Who would ever imagine a big toe could hold so much power over the entire body!
Joanne

 

[Raglet]

Jo - so great to talk orthotics ! I love it.

My toes are actually hyperflexed rather than hyperextended, although I know that it does not show up well in the picture. My big toe sticks up above my foot because it is bent and my foot itself is rotated (outer edge towards the floor, inner edge up off the floor). Because the big toe only has one joint it doesn't curl downwards as much as my other toes, which gives it the hyperextended appearance in the photo. Boy is this hard to explain in words :lol:

The nerves that keep my toes extended are all shot to pieces - actually I would love to be able to extend my toes, but those days are long gone. I have toe crests that I wear under my toes to keep them extended when I wear shoes, but not for my big toe. Actually I have very little movement in my big toe at all. I notice a big difference when i have my toe crests on, as then my toes can actually have some meaningful contact with the floor.

I definitely know about how one little bit can much up everything else - with me it's my hip - my twisted foot does in my hip. Go figure. But one toe doing in a knee, wow, that is pretty amazing ! Glad you got it figured out for him.

AFO's that articulate sound like a really good plan. I am interested in checking out the carbon fibre AFO's for my other foot, because then I wouldn't have a slab of plastic wrapped around my heel, which would be really great.

Actually I just remembered that over summer I found some sandals that because of the way the straps are arranged they strap my big toe down. It made an enormous difference, and I could get away with wearing them minus the AFO provided I put up with the foot drop. My foot wasn't quite so bent then. Just strapping down that toe made a big difference, so I guess that's like your son's experience with that big toe. With me the strap eliminated the flex in my toe, and held it in contact with the sole of the sandal. When I wear shoes, the top of my shoes shoves my big toe into place to some degree and that helps. But my toes are pretty useless in terms of balance - no feeling for one thing, and they are pretty hopeless at 'gripping the ground'.

cheers

raglet

 

[JoD]

Jo - so great to talk orthotics ! I love it.

My toes are actually hyperflexed rather than hyperextended, although I know that it does not show up well in the picture. My big toe sticks up above my foot because it is bent and my foot itself is rotated (outer edge towards the floor, inner edge up off the floor). Because the big toe only has one joint it doesn't curl downwards as much as my other toes, which gives it the hyperextended appearance in the photo. Boy is this hard to explain in words :lol:

Unfortuntley it makes a lot of sense...one of those times I wish I had no clue. It does sound like just keeping the toe down straight will give relief. I just read about the carbon AFO's. They sound interesting. My dad wears the AFO for drop foot as well so I've seen those up close as well. You might want to look through the cascades catalog to see the different versions and the what type of condition it might treat.
http://www.cascadedafo.com/index.cfm?pageID=2143
I'm sure they make them in adult size.
Alex could not wear the hinged AFO's until he had SDR surgery. His tone was so high he popped out of every AFO no matter how restrictive. The SDR allowed him to sit by himself for the first time as well as take his first independant steps ( using a walker) at age 4. He also had adductor ( or abductor ...I always forget which is which) muscle leagthening surgery about a year later to prevent his hip from sublexing. Neither were easy surgeries but the results have been remarkable.
Joanne

 

[acard]

Raglet,
I am just so sorry that you are having such a rough time.
I don't know a lot about what is going on, but here for you just the same!!


Hugs,
Becca

 

[Zoi]

Raglet,

I'm really sorry to hear about your foot troubles...

I don't know anything about orthotics either, but wanted to send loads and loads of hugs your way! Keeping my fingers, eyes and toes crossed that the progression of things will be halted somewhat with your recent rituxan/cytoxan/pred treatments... :grhug::grouphug2:

:flowery:

Zoi

 

[Raglet]

Update on my foot woes ......

well I made it into orthotics today, and we tried various solutions. But in the end, what worked best of all was sticking with the same splint but putting in a extra strap on that goes around my ankle. It straps my foot into the splint better, it doesn't totally stop my foot deviating but it reduces it. The next step is a splint that entirely imobilizes my ankle, and we really don't want to do that unless there is no other way as that would obviously really interfer with my walking.

So, I think this was a good solution. Actually, the strap looks just like that one that goes from the heel and then around the ankle in the picture JoD posted. We can also add a toe strap if necessary, I want to avoid that as the straps are quite bulky and they need to fit in my shoes.

Life is looking up, I borrowed a friends car today so I am now mobile again (can't get my walker into the car though as it's a wee convertable, but can't complain & am just using crutches instead).

cheers

raglet

 

[Jirel]

I found the explaination very interesting - I'm sorry to get so interested in something that I know must be a real B**ch to deal with. It makes me wonder about the times when my big toe on my left foot cramps and goes straight up in the air.

I think you have more than enough problems and hope they can at LEAST find all your stuff in your car. You have enough to deal with already. Good luck.