Physical problems have gone downhill in 3 years

[Siddy1]

Well I am experiencing all the walking/standing problems on Quix's list in a past post -and more!   In three years, with SPMS I have really gone downhill from weakness in the left arm/hand to almost not being able to use it. Then my left leg/foot has gone from heaviness in the left leg to severe footdrop (even with an AFO) to hardly being able to drag it around and   my best feature was that I could stand for long periods of time - well that has diminished to 5-10 minutes and then I need a chair. By that time  I am so tired that it takes an hour of sitting to energize me enough for another 10 minutes.

I get around by holding on to furniture, but give me a wide open space and I will fall.  Since my past falls have been disastrous, no open spaces without a walker for me.

I have a friend with ALS (Lou Gherigs) and she is at the same stage as I am.  She also has no appetite, just like me, except she is losing weight and I am gaining for some reason.   There are so many similarities between us I keep wondering about my dx.  Apparently ALS patients do not have 0-bands and have more rigidity or so I am told.
Marcie

[Quixotic1]

I forgot.  They do have specific nerve stimulators to assist in foot drop.  These go over the muscle that pulls the toes up, the tibialis anterior.  But, not everyone will benefit from them.  Hanger Orthotics owns one of the companies that makes such a device and periodically has clinics to evaluate the appropriateness of them for people.  I believe Hanger is nationwide.

If the hip flexors are a major cause of the problem, tho, the muscle stimulator may not work.

Q

[Quixotic1]

I do not think the electrical muscle stimulator is the next step.  That is, unless you are absolutely certain of whcih muscles you need to stimulate.

Remember that no amount of artificial "strengthening" is going to be of use if the motor nerve to that muscle never arrives.  You could be Mrs. Atlas and if there is inadequate nerve signal arriving from the CNS, then the muscle will not move.

Now, that said, there may be muscles that can be drafted to help carry some of the load.  I believe you need a good Physical Therapy eval to determine this.  They can help you determine if the stimulator will/might  work and show you exactly where the lectrodes should be.  You could do yourself harm if you inadvertently strengthen the wrong muscles which could further hamper your stride.

Quix

[frecks]

yes i have a ele chair i use it outside inside i just hang onto everything i also have a used scooter and lift in my van so i do go our house is a rental so i dont use anything because the landlord said something about it its hard ive been thinking about you so glad im not in this alone. do you know is there anything that helps with balance? friends are a god send id go crazy if i didnt have my friend lori to talk to we help each other well my daughter needs something hope you can read this have a good day becky

[Siddy1]

Thank you, Becky, for your kind words. I really hope you are not doing as badly as I am. My heart goes out to you as you are so young and with 2 children to care for it can't be easy.   I have an electric wheelchair but am afraid once I get in it, that will be it.  Besides which our house is not wheelchair friendly and negotiating the doorways is a hard.    Do you have a diagnosis of MS?    

[frecks]

my nme is becky im 41 and you and me have a lot in common i walk (shuffle) haning onto everything if not i fall  i feel like im going downhill also  keep your head up i will pray for you

[Siddy1]

Thank you so much for your reply.  I do pop in from time to time and read up on the board. I am sorry to hear that you are having the same foot dragging problems.  Nothing like taking your confidence away. My attempts at exercise are futile and I feel much worse afterwards so I've hit that on the head.

I am right handed and everything  that is happening is on my left side.  So far my right side does not seem to be affected.  I feel like the left side of my body does not match my right side in size or appearance.  My left arm is so bad I bought an electrical muscle stimulator  but now I have it I don't know where to place the electrodes.  I am wondering if I would do damage if I put them in the wrong place.

As far as paresthesias is concerned, on some nights my  feet burn for about an hour when in bed.  I also get restless leg syndrome in the one leg.  I get out of bed and stand on a cold floor and that seems to do the trick.  I get the odd  twitch in my seemingly nerveless toes but rarely do I get a lot of tingling, pins and needles, or muscle spasms.  

I think the hip flexor weakness is right on the ball.  I remotely cannot lift that leg when sittying or lying. I usually end up lifting it to the place I want it to be.  When walking I can lift it ever so slightly - about 2 inches.  

I would be interested to learn how the Dragon Naturally Speaking works out for you as it sounds very interesting.

Quix I do wish you all the best and thank you for the wonderful help and encouragement you give to others.

Marcie

[Quixotic1]

Hi, there, good to hear from you, but I wish things were going better.  Even though progressiven forms of MS are always said to have paraparesis (weakness in the lower half of the body) I have heard from several who have a hemiparetic pattern.

I wanted to say that if you have foot drop even with an AFO, I suspect you have developed severe weakness of the left hip flexors.  these are the muscles that lift the knee up while you are standing.  If you can't flex your hip high enough, the foot on that side will drag, even wearing the AFO.  Another way of checking it is while you are sitting.  It is almost impossible to lift the knee off the chair.  I also have this problem and my foot dragging is getting worse.  I find I have to rotate the foot outward and it still drags.

There is little way this would look like ALS.  ALS presents symmetrically.  It is purely motor.  The brain has no or very few lesions.  There is significant muscle wasting and then fasciculations within the shrinking muscles.  The hands and feet show the most and earliest atrophy.  From what I remember of your history, it does not sound like ALS, but I can see that both diseases might reach a point that looked much the same in both people.  The difference then is the progression in ALS.

Do you have paresthesias?

I hope to see you more often.  I'm sure that typing is a problem for you.  Are you right or left handed?

This week I am loading a software package that will allow me to speak all the commands to move through the internet and to dictate my posts and the articles I want to write.  I need this when my right arm and hand (my dominant side) are too weak and too painful to type.  I will keep you posted on how well it works.  The package is Dragon Naturally Speaking 9.0.  It is not terribly expensive.

Good to see you are still with us.

Quix