Craptastic! Darnit!

I wonder if the electric stimulator AFO would allow me to drive (if it works and if they get me set up with one)

I think I'm mostly just hoping this isnt permanent. I've had numbness in the feet and legs before, and it's let up before. Knocking on wood that it goes away. I'm going to miss my car if it doesnt.

Erin, I guess I'm speaking from just my own point of view and maybe there are AFO's about that do a better job than the one I have now, but remember that they won't even order you one unless you fit their criteria. You may be worrying for nothing.

I know, I'm just sitting here, bored out of my mind and trying to at least be informed. I'm pretty much expecting them to just give me a bunch of physical therapy and an MRI or two and not much else.

I'm trying to keep moving around, basically so that I still can. I'm just bored and getting really really really really frustrated...and ticked off at unsympathetic family members who think that I'm faking this. (I dont think I could fake these kinds of symptoms)

I keep hoping this numbness is from the weird back pain I had the other day when I was bending over a lot and sorting thru some stuff in our store room. Hoping it's a pinched nerve, but I know it's the MS.

Now I know what the weird muscle spasm I had in my right hip about a month or two ago probably was. Woke me from a dead sleep, and hurt so bad that I thought I was going to throw up and pass out. Never had anything hurt that bad, even broken bones...It was right in the spot where a lot of this numbness is coming from in my hip. Probably some freaky MS thing that was a little hint of what was to come.

I just cant wait till Xmas is over. I'm pretty sure my Xmas is going to suck, even tho I know what one of my presents probably is. (I was the one who got it off the porch a couple of weeks ago.) I'm kind of excited about that present, but still not looking forward to Xmas as much as I was before.

I have bilateral AFO's. Mine are called Toe Offs. The orthotist wanted me to try the least supportive. I don't slap, slap, slap around when I walk. I use a cane or an arm when I'm out and about. They do make me walk decent and my feet don't feel heavy like they do without them. They are like 1/16" of an inch on the sole. Then the brace part goes up the front of my leg and they have velcro above the ankle and below the knee. They give me ankle movement, etc. They fit in my normal shoes. I have no trouble driving. My feet are not numb and so I can feel where they are. I do believe I could still drive a stick shift with them.

These help enough so that I can get around the house without a cane, etc. I use counters, door frames, furniture and the like. For now they will be O.K. My foot drop is not such that I trip over my toes when I walk without them.

At some point I know I will need casted AFO's. The ones where you cannot move any part of your foot, no ankle movement and you have to have a wide shoe. They would have to fit perfectly for someone with CMT. When I get to having to have those I will lose more muscle. The healthy ones will atrophy. Never mind that the muscles affected by CMT have atrophied. And of course CMT is progressive.

There are AFO's that have a flexible ankle joint that is Spring Loaded. This allows your toe to go down to work the gas pedal, but still provides the needed Lift to the Toes when walking. A friend here had one, not sure if he still does.

the physiatrist told me about that one the other day. He didnt have any pictures or examples tho. His office didnt have computers all over it like all my other doctor's offices have now. (kind of nice to actually talk to a doctor and not look at computer screens)

My right foot stiffened up a LOT! I guess spasticity is good for something. At least that helped my right knee not feel so weak. Feels like someone put a very tight plaster cast around my achilles tendon and the bottom of my heel. I'm walking like I've got a peg leg.

I had to get my mom to massage the achilles tendon. It was so tight earlier today that I felt like screaming. I'm trying to not have to suck down muscle relaxers like baclofen and valium. (valium is working better than baclofen...which is why I dont want to be popping them like Tic-Tacs)

I'm kind of scared that it'll get so bad that I'll rupture the achilles tendons. I did that to my left ankle back in 2001. I now wonder if that was from an MS thing that I just didnt know I had. My heel was numb back then just before the rupture, and I thought it was my shoes. Now it's making me think back to a few other weird things.

I know I'm boring talking about which supplements help spasticity, but let me remind you that a board certified neurologist first put me on magnesium many years ago. He said it would work as well as Baclofen and Zanaflex for me, and it did. He told me to find one which causes the least diarrhea, and i did. I now take over 1000 mg a day in divided doses, but now I need MORE to help. I take 1000 mg of calcium a day, NOT at the same time as the Mag (I take it between meals and it helps any acidity that might be in the stomach, too). I take 800 mg of D3 a day to help absorb minerals. I take Vitamin E complex and 100 mg of B1. I do the leg stretches the PA showed me (boy do those stretches help!).

Last night I slept without any spasticity or jerking. What a blessing.

I just had to put these things down even if you are not interested, because they might help if you try them. I know none of this is a perfect answer. I am still walking around without a brace. I did fall down stairs a year and a half ago and broke my kneecap, due to numb feet. They are less numb than they were, possibly due to so much supplementation and exercise. I don't know. I just keep trying.

I was originally ordered to have an AFO to the right foot due to drop foot, but I actually have drop foot to both feet. The doctor suggested the over the counter ones - didn't fit - were too tight, so I didn't wear it (mind you, this was back in August). My walking & balance has gotten worse - co-workers commented on my zombie walk as well, so now I'm wearing the Dorsi-Strap lite.

So far, so good - it took awhile to get it right inside of my tennis shoes, but I can definitely walk to the other end of the building at work without having to lean against the wall or sitting down to take a rest. Gives me a little bit of hope. There are extra straps with it to wear at home, but I don't wear them at home. Today was the first time I've gone shopping without the support of a cart, lean on my husband or put my arm around my kids for support since August & it was ok.

I tried to make myself something like the Dorsi-Strap. Dont have it perfected yet, and my feet just cannot stand my SAS sneakers right now.

I just ordered a new pair of Crocs (wont work with an AFO, I know) so that I can at least walk around out in the front yard without freezing my feet to the cement or ruining my socks. (yes, I wear socks with my Crocs!)

Love the internet. This week I've bought wrist weights so I can play games with my Wii and have something a little heavier than the WiiMote giving me some sort of exercise, and I got a new TENS Unit that came last night. That works so much better than the one my mom had, and now I've got new shoes coming. (ahhhh...Shoe shopping therapy!) I'd go nuts without my internet and my credit card.

I go to the physiatrist next week. I'm sure I'll have to carry my SAS sneakers with me if I'm going to get an AFO. Dont think Crocs and AFO's are compatible. Hopefully I wont have to do anything much more complicated than the Dorsi-Strap.