Foot Drop and Other Fun!

[BOK2Bjan]

I am finding out rather abruptly lately, that I may have been in the watery depths of Egypt for a while.  Denial.  I am quite a bit sicker than I have wanted to admit.  Even though I have every diagnosis in the book, I still somehow think I can just keep on trucking.  The truth is, most days are spent in bed, and I STILL think I can do everything if I try hard enough.  This confession comes after finally bringing my right foot/ankle dysfunction to my internist's attention.  I've told him for years that my ankle is getting stiff, but this past week, the whole right leg began to hurt and feel semi numb to the point I was "loosing it".  It felt so tight and sore and yet I'd done nothing.  I tried to lift my foot toward my shin, but it wouldn't go.  I had my daughter push on the foot from the bottom and she said "are you pushing against me?"  I wasn't.  It wouldn't go anywhere.  I've been tripping for quite a while, but at first I blamed my shoes!

Well - when I went to get fitting for my brace, the rehab tech said I must have had this quite a while, and couldn't believe I hadn't been sent for a brace before this!  I wish I could get the walk aid - but no money, so I'll be thankful for what I can have.  My right wrist is messed up too, but I do the best I can.  Problem is, I'm noticing that my symptoms are progressing rather aggressively lately and I still haven't gotten my appt with the ms specialist at KUMed.  The referrals were faxed 2 weeks ago but no response yet.  I'm trying to see the ms specialist, a GI specialist, and a Pulmonologist who specializes in Pulmonary Hypertension (from my Systemic Sclerosis).  I need to get back on something right away it would seem.  Since the Copaxone and I didn't get along, I'm going to see about Interferon - one of them.  I'm concerned about all the pain I'm experiencing on top of all the pain I normally have.  My right leg, hip, ankle, really are bad.  Also my shoulders are becoming spastic.  I'm not going to list all my new symptoms, it would take to long and would depress me.  I will say my chest x-ray today showed worsening of fibrosis (from all the aspirating!!)

Does anyone out there have foot drop?  Or pain that goes down the leg that seems like it's in the bone?  I'm tired of hearing that I have so many different diseases, they can't tell which one is doing what.  I have found out more myself than my doctors have.  Then they just confirm with tests.  I should get paid!!

Sorry for my downer attitude.  I'm so tired of hurting and having things constantly go wrong.  I need to find a way to make some money too, and I can't imagine cause I'm sick the majority of the time and the rest of the time I'm in pain at the very least.  I'd love prayer from those with that bent.  Thank you in advance.

I wish everyone well.  I'm glad I can vent a bit to people who can understand.

Blessings, Jan

[BOK2Bjan]

Hi, thanks for that.  I've been worried about the shoe deal.  I know I will have some adjustments to make but I can't let my feet get hot due to having a rare vaso-spastic disorder - erythromelalgia.  Anyway, the swimming shoe is a great idea.  Thanks.

Jan

[melissabarnett]

hi my daughter has AFOS like your getting and she got shoes to go with them  they are a little heavy but she walks ok in them but if your feet gets to hot in them go to ant store that sell swimming shoes they are mesh and will give you the slip safty you need when walking out and about pluss keep your feet cool some what but when u go to buy them wear your beaces so u can get the right size my daughter waers a 3 in shoes w/0 her AFOS and a 5 with them on hope i helped

[LATW]

What I have found is when I swing my leg forward the AFO helps keeps my toes from hitting first.  It is not 100% effective but better that it is without them.

I do still tend to hit the ball of my foot first though.  But I have not have as much trouble with tripping.

When I sit in a chair my toes do tend to be raised because the AFO is still pulling my toes up.

I leave mine on until I get into bed as long as I don't get too hot in them.  They really help with spasms.  

I am sure you will be happy with them.


LA

[BOK2Bjan]

Hi, thanks for responding.  Mine isn't going to have a joint that allows for downward movement.  I couldn't do that either.  Yours sounds like mine is going to be.  He just said that I'd be able to move the foot up slightly IF I were able.  I'm not sure how that's going to work.  I'll find out!  I'm hoping it'll help the pain in the foot, ankle, leg, hip, ...I'm hoping for a lot from one brace! lol  Jan

[LATW]

Mine start at my toes and run up the back of my leg just below my knee.  I don't have a joint in my though.  I don't think a joint would work for me because I need that total support the solid piece gives me.  

Driving is not so easy.  I am signed up for driver rehab where I will learn how to use hand controls for my van.  That will be better that trying to drive with AFO's. I hope.....

It did not take long to realize how helpful the AFO's are.  I don't catch my toes and fall anymore. Yeah!

They also give me plenty of support so my legs do not wear out as quickly.  I can walk around the store as long as I have a cart to hang onto.

I still use the motorized cart as long as one is available but it is nice to know if I have to walk I can.  My knees hyper extend too. Blah..............life is not fun sometimes.

LA

[BOK2Bjan]

Thanks for the input.  I'm being fitted for an AFO but at first he was making one that fit just into my shoe, but then he decided to make one that goes up the leg to just below the knee.  It will wrap around below the knee and at the ankle, go down the whole leg and then have a joint like thing at the ankle and then under the foot.  So, although it will hold my foot at 90 degrees, it will allow me to lift it up slightly as I'm able.  He said I'd need two show sizes probably, as it tends to push the foot forward and the shoe feels too short.  SO - question.  I assume you can't wear it without shoes on?  I have erythromelalgia - a vaso-spastic disorder, the antithesis of raynauds, which I also have.  When my feet get warm, they swell, get HOT, and ITCH in a way that you want to cut your foot off.  They're much better than when I first got it.  I used to have to sleep with my feet in a bucket of ice water.  I was considering amputation, but it's a long story I won't go into.  I don't want to have to wear shoes all the time and I didn't mention that to him at the time I was being "casted".  I never think of everything when I need to.  I figure I'll wear it when I can, but I would love to have some relief from the pain in my leg and ankle - also my hip.

jen - I agree that those elastic things help.  I have them for about every body part.

Lulu - When you said you feel like your bone is going to snap - I get that too - my arm feels like it'll break when I use it too hard at times.  It's a weird pain!  And yeah, we're weird alright! lol

LA - what kind do you have and I'm encouraged that you're able to feel comfortable with them on.  That made me feel more positive about it.  I think my right wrist needs one too.

Thanks and keep up the feed back if anyone has more info on this.  

Blessings, Jan

[jensequitur]

I don't have an AFO - just a simple elastic brace that I picked up from Walgreen's one day when my ankles were hurting so badly.  But it really helps!  

[LATW]

Most days I am still in denial! ;-)  I think I want to stay that way.  Thinking I can still do whatever I want to do helps me deal with this.

I have foot drop and AFO's (braces) on both feet. They help me walk independently. without them I am unstable. I do go without them around the house at times but keep them on about 99% of the day.

What Jen said about the braces helping with spasms is so true.  When I sit and relax it is really good to have my braces on otherwise my calf tightens up and pulls my foot and toes along with it.

LA dx'd MS 2008

[Lulu54]

Hi Jan,
i seem to spend some time on the dark continent too - I float along on denial every once in a while and then the reality hits again and bam I'm back here.  

Is your foot drop evident all the time now?  My leg numbness and foot drop become pronounced when I am tired and/or overheated.  But it also seems to happen more easily these days.  

As for the pain in the bone, I get that in my *good* leg - the left one.  It feels like the bone is going to snap it is such a sharp pain.  But then it goes away.  

This MiSerable disease has so many variations of the symptoms it is hard to match them up with anyone else, but we can come pretty close.

Would there be any problem with calling the MS office and inquiring as to the status of getting your appt. set?  Don't assume that they are working on it - mistakes can be made and you may be waiting for a long time assuming they have everything they need.  I certainly don't mean for you to be pesky, but after two weeks I think its ok to call and inquire.

Keep us posted, ok?
Lulu

[jensequitur]

Hey, Jan - as you commented, we have very similar symptoms!  My right calf started to hurt last week, a few days after I bruised my toe rather badly.  I thought at first that it was a result of using the leg differently (limping around because of the toe) but Saturday I started feeling like I was going into a relapse.  The calf hurt so badly that it seemed to radiate up into my knee and the back of my thigh.  I also had a number of new paresthesia - my hands started to burn, and I got some new painful pinpricks in my hands and face.

I remembered this morning that I had used my ankle brace with some success for the spasticity in my foot, so I put it on this morning, and I think it's helping.  It seems to hold the muscles together at my ankle, and everything has to work a little less hard, which keeps from setting off the calf cramp.