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