Atrophy and braces: Please help me
 

Dearest Neurotalk friends,

I have progressing atrophy of my legs, and my ankles are turning in and my knees are knocking.

Has this happened to any of you? Should I try wearing some sort of braces to stop this?

I have also begun to resort to a walker when I am out and will have a long walk to the doctor's office or whatever.

I am feeling a bit desperate a this condition (Idiopathic PN, and Small Fiber Neuropathy) is changing my life now.

My knees are also hurting and I wonder if having my knee replacement will help at all with my walking?

As you can tell I am feeling discouraged.

I also recently read an article about the atrophy of the brain as a result of the loss of stimulation from nerves in the feet and legs.

What? Please let me get no worse.

Hugs, ElaineD

I was so hoping someone here would know about neuropathy atrophy and about braces.

Hugs, ElaineD

Hoping for you
 

to stop wasting. I lost 60 lbs (was fat to begin) and had to go to a walker. It was explained to me that conditions that involve muscle wasting usually have a "critical phase" that will run its coarse and stop. Mine was Amyotrophy. As far as braces I have no experience but remember that my Chiropractor was pretty savvy on motion,walking, etc. Maybe you could get some help thatway. Good Luck, Ken in Texas.

Hi, I probably started wear a knee SUPPORT about 20 yrs ago for right knee...I was still going to my gym into my mid 60's....I still wear a support daily and now I'm working with a magnetic support...not a brace per se, but supports.

Since hip replacement my knee is so worse hence the continuing knee supports and many topicals and joint supplements.

Then because of knee mess, foot/ankle is all worse so I wear supports on my ankle and topicals too.

I wear a back support and have been for probably 20 yrs too -- lower back issues have been a part of me for about 60 yrs.

I know our issues are different I think, but this is what I work with.

I'm doing all to do NO knee surgery, hip did me in and I fear a KNIFE to my body.

My main issue for me is Osteoarthritis.

This is my story, ElaineD... C

Thanks Ken. It just seems to be something that isn't posted about much....atrophy and braces. I know they do braces for foot drop, and I do have this.

The atrophy has occurred about 8-9 years after the neuropathy started. It is idiopathic (Probably related to my Immune Disorder).

I just don't want it to progress, but I feel so 'disabled' with the pain of my arthritic knees and the instability of my PN.

Oh well....I do my best. We don't 'get out alive' do we?

:)

Hugs, ElaineD

I use braces for foot drop and would say yes to your question of braces to keep your feet and knees in proper position. IMO I think it's worse for your whole body to have these things out if alignment, and will just keep causing more problems as other body parts have to compensate for the ones that are weak and unable to function properly.
I held off as long as possible before resorting to braces for foot drop, but now that I wear them, I am so glad to have them. Walking is so much easier with them, my gait is better, speed is better, the rest of my body is not so tired from compensating for the weakened calve muscles.
Google them and see what is available "off the shelf" I find these to be lighter and less bulky than custom made ones. I like the carbon fiber braces.

Hi Elaine,

I don't have PN but CRPS, a close cousin I suppose...and have survived multiple foot operations and major nerve damage. My physical medicine and rehabilitation specialist was opposed to me personally going into a brace except as a last resort. They help hold position but will contribute to atrophy since you are no longer doing the work yourself. I would council moderation and a PT consult. There must be exercises that you can do to help keep the muscles stimulated and the nerves getting motor signal. Consider doing aquatherapy so gravity is not also an issue. You can really get a lot of muscle work and stimulation in the water. I should know, I was non-weightbearing on crutches for nine months and on a scooter for a year.

Keep at it no matter what and don't give up hope. For the longest time all the reps I did on PT exercises seemed to go nowhere but they were preventing further loss. Eventually, oh it was slow, I did start to build some muscle back. It took months but sometimes stubbornness is a virtue!

I am sorry you are dealing with so much. We all know how exhausting it can be. We are here for you.
:hug:

Hi Elaine. I've begun to have wastage in my right leg and my feet seem to be caving in. I don't know about braces sorry but my friend who's a very experienced physio thought an exercycle would be a good idea. I can't sit on an upright one so am currently looking for a recumbent one, where you're in a seat with arms each side. Especially good if balance isn't too good or you have weakness. I hope you find the right solution for you. Good luck ( :

Probably should add, since exercise is good for preventing atrophy... I do not wear any braces when I exercise. Do you currently wear your foot drop brace all the time? I wear them when out and about, working, shopping, etc.
Are your motor nerves to certain muscles damaged from the pn? Mine are, that is why the braces are so beneficial for me. While it is good to stimulate the nerves to help with atrophy, which I do through exercise, it is hard to push through an entire day with damaged motor nerves. That was where the braces came in, they make it able for me to work, and carry on a normal life, where as without them my body was too fatigued.
Hopefully all this info will help you with your decision-----I hope you find some relief either way. You always have the option of both, exercise and braces. You do not need to wear them all the time.

Do a search for Dynamic Bracing Solutions. They deal with neuropathy
 

This was recommended to me on another forum:

Dynamic Bracing Solutions

Does anyone know about this technique?

Hugs, ElaineD

Do you have a rx for braces, and a professional you are working with who will order and fit them for you? I used Hanger for mine. They are popular here in New England, not sure if they are where you live.
Looking online will give you an idea of whats available, other than custom--which in the place I went, are mainly a hard plastic brace.
Most of the carbon fiber braces I found online need to be ordered and fitted by a licensed bracing professional.

I am just at the very beginning of this idea, notherngal. Is Hanger a company?
I'll Google an see.

Thanks!

Hugs, ElaineD

yes, it is a bracing and prosthetic limb company

Waiting for braces!
 

Dearest Neurotalk Angels,

So I saw the braces specialist the week before Christmas. What an experience! I put on a pair of 'sample' Foot Ankle Orthotics in my size and was walking so much more easily right away!

The technique is moving my body slightly IN to the front of the braces, which is like the stance for downhill skiing. My balance was so much better, and I could turn easily.

Now I'm just waiting for the final detailed RX to be approved by my Neurologist (who took a week off between Christmas and the New Year) and then my braces will arrive and I'll be fitted.

These aren't the fancy fancy ones from Bracing Solutions, that have to be molded to fit me exactly. The reason I didn't order those is:

1) they cost $20,000 for a pair and are NOT covered at all by Medicare. The ones I'll order are $1,400 a pair and ARE covered by Medicare.

2) The fancy braces take 6 months of hard work to learn to use since they require a great deal of adaptation to use properly. And the FAO braces are 'put on and walk'.

3. I can always graduate to the fancy braces if I decide they're worth the money.

If I were even 20 years younger, of course I would consider the braces that would let me run, ski and dance again. But at 73, I'll settle for walking, at least for now.

I'll keep you posted, of course.

Happy NEW YEAR!

Hugs, ElaineD

Hi Elaine,

I'm very happy to hear the braces are going to work for you. What a great way to start the New Year!

Cliffman

The braces are in, but I can't get them for another week and one half because we are away on vacation. I had hoped to have them in time for the vacation...but I can wait because I MUST of course, :)

I'll let you know how much they help me with the severe problem I have with walking due to my PN.

Hugs, ElaineD

Hi Elaine,

I I'm new to this forum and was surprised when I read this post. I didn't realize small fiber PN could cause muscle weakness and loss of bulk muscle ?

Do you have muscle fasciculations along with your muscle atrophy in your feet ankles and calves as well ?

I've had fascis for over 15 years and had 3 EMG's back about 12 to 13 years ago and they mentioned I might have small fiber neuropathy. I never followed up with testing once I had a clean EMG. So here I am 15 years later and I'm seeing muscle weakness in the feet and calves.

I recently had a knee replacement due to years of sports injuries to the knee and I can tell you the rehab has been rough. I'm still without a DX of anything other than benign fasciculations. If you have muscle weakness in your legs I can tell you the rehab will be a long road and painful. I'm still walking with a cane when I leave the house and its been 7 months since the surgery.

Have a good day,

Ken

Generally--
 

--small fiber neuropathy will NOT result in muscle wasting/weakness; in fact, since small fibers subsume the sensations of pain, temperature and autonomic functions, and not motor functions, one of the distinguishing characteristics of small fiber syndromes is lack of motor symptoms.

That having been said, many of the conditions that can result in small fiber syndromes can have effects on muscle as well, but in those both the small fiber and muscle problems are secondary to the condition (i.e., diabetic amytrophy and neuropathy, mitochondrial syndromes).

And, the very fact of the symptoms can lead to people wanting to move less, be less active, and to be more fatigued more easily. That lack of use is more likely to result in muscle atrophy than the neuropathy itself.

AND--there are neuropathies that are primarily small-fiber with some large fiber component, in which deterioration of motor nerves can result in muscle weakness and wasting.

I have profound peripheral neuropathy in my feet and legs.

I have small fiber neuropathy in my arms, hands, fingers, face, lips and tongue.

The pain, tingling, burning, stabbing and itching of SFN is controlled fairly well with 3600 MG of gabapentin.

Regards, ElaineD