I was able to get my orthotics, all of them, covered by insurance and I do not have diabetes. I have substantial, generalized neuropathy including AN. So far, so good. What they likely won't cover for me is any immunosuppressives as everything keeps coming back with no inflammation....the nerve biopsies were quite abnormal 4 years ago and now the muscle biopsy-abnormal....so it is hard to NOT have a case for the orthotics.

I think it depends on your policy.

I have seen all kinds of splints and braces covered...however, they usually have a 2 year rule...AND...some of the better activity orthotics are not covered in full. Also, I think you will need the PT or OT referral for recommending the orthotic or brace and for fitting....One of the braces I looked at cost roughly $5K...for one. I can not imagine my insurance covering that in full.

It is likely best to call and confirm coverage, as you can get 'sold' an unreturnable device, and be stuck with a bill.....medical supply companies will often do that.

That happened with my fracture 'coil' and boy there was a fight over covering that as well....insurance did finally cover it, thank goodness. But the doctor got very fed up with the whole situation. Docs dont like to fight insurance companies and will simply discharge you or refer you on..

That said, I have seen patients have to fight for wheelchairs when they can no longer walk.

Hi there - 8 years later and wondering if you got more information on the slipping sensation you described in the Neurotalk support website. I have recently experience the same thing, my feet feel like ethey are slipping out from under me as if on ice (but nothing is actually happening). Getting frustrated. Neurologist so far cant find anything to cause this (nerves seem okay and MRI shows a few pinched nerves). He has given me back exercises to do and I am just starting those. Did you get conclusive information on what might be causing this sensation?

Welcome lisachip. :Tip-Hat:

Hi lisachip,

Has it really been 8 years? Wow.

The "conclusive" thing is tricky. What's conclusive for me is that I no longer have the problem. I know that the reason I no longer have it is that I've been using a LOT of methylcobalamin lozenges ~ enough to equal close to a B12 shot a day.

I didn't use that many last summer when I gave up eating GMOs and began eating only organic food, and no longer washing veggies from my garden before cooking. My reason for not washing was that I'd learned that B12 comes exclusively from microorganisms that make it. And, those microorganisms are plentiful in the air and soil.

I put a chart on my website about the difference in nutrition in nonGMO vs GMO corn. Pretty startling.

Then, last winter I forgot that the main reason I wasn't using as many methylcobalamin lozenges was that I was supplementing with microorganisms from my garden. No garden veggies all winter, and by spring my peripheral neuropathy had come back. Major burning in my right thigh. But the slipping feeling had not returned. So, overall, Happiness.

I am still convinced that if my low vitamin B12 had been treated earlier I would not have to use a walker today.

To be clear, my nerve problems were made worse by living in the condo that had hydrogen sulfide in it. If doctors hadn't kept telling me I didn't need more B12, then possibly I would have used more while living there and protected my nerves enough so that I could walk today without a rolling walker.

It's important to keep notes when you use B12, so that you can clearly see how it's worked for you. It does not work the same for everyone. My need for a shot a day to get rid of peripheral neuropathy and the slipping feeling may be twice as much as you or someone else needs. Keeping a record of how B12 works for you will help you see how much is the right amount for you.

In terms of balance, I've wanted to use a balance disk for ages, but I don't have enough balance to do that.

However, my cousin recently sent me an exercise which is very useful. All you have to do is stand on one foot without holding on to anything, for as long as you can before you lose your balance. For me, if I could fast, I can get up to about 12, rarely 18.

Karen

Karen,
I just read you 8 years old thread about your neurological symptoms and your long struggle. Good to hear you have found a way to keep your B 12 under control.

David, thanks for all the instructions regarding exercise.
Exercise is important, but --Oh-- such a thing to find time. I think one has to be strict, and make a strict schedule.

This is the first time I have heard someone describe some of the same symptoms I have had.
The way I feel the symptoms are: Especially during stress, exhaustion and tiredness, I feel as if the ground I am standing on is vibrating as if there was an earthquake.
Sometimes when I am sitting on a furniture, it feels like the furniture is vibrating and shaking.
When I get out of a car after having been driving, when I step down, I feel as if I am still "moving" in the same direction as the car was.

Sometimes I have the feeling of dizziness and unsteadiness when I walk in large open spaces.

Often my legs feels really heavy and numb, sometimes I stumble and drag my feet a little.
Sometimes it feels as if there were a rubber band around my knees when my legs feel heavy.
I have explained this feeling to neurologists but have not gotten an answer.
When the doctors are examining my balance and walking, it is not always the same.

Karen,
I just read you 8 years old thread about your neurological symptoms and your long struggle. Good to hear you have found a way to keep your B 12 under control.
David, thanks for all the instructions regarding exercise.
Exercise is important, but --Oh-- such a thing to find time. I think one has to be strict, and make a strict schedule.

This is the first time I have heard someone describe some of the same symptoms I have had.
The way I feel the symptoms are: Especially during stress, exhaustion and tiredness, I feel as if the ground I am standing on is vibrating as if there was an earthquake.
Sometimes when I am sitting on a furniture, it feels like the furniture is vibrating and shaking.
When I get out of a car after having been driving, when I step down, I feel as if I am still "moving" in the same direction as the car was.

Sometimes I have the feeling of dizziness and unsteadiness when I walk in large open spaces.

Often my legs feels really heavy and numb, sometimes I stumble and drag my feet a little.
Sometimes it feels as if there were a rubber band around my knees when my legs feel heavy.
I have explained this feeling to neurologists but have not gotten an answer.
When the doctors are examining my balance and walking, it is not always the same.

Hi Synnove,

I'm glad that sharing my experience is helping you because my experience is similar to yours, regarding how our feet feel, and that disturbing sense of movement, when in fact there isn't any.

Regarding exercise, I think one big reason people who are sick gain weight is that it's hard to even walk when there's so much chance of falling.

I just weighed myself this morning and luckily have lost a pound, doing minimal exercise. I mean Minimal.

I'm feeling really sad today, because of Wells Fargo, so this is going to be short.

Karen

The same symptoms.
 

I have the same symptoms. I went for ice cream last night and almost fell three times. It is very scary I just joined today and it is wonderful to find a group who understand this strange malady. I have numbness in both feet but am lucky to have no pain. Clara

Welcome CLARA BOYER :welcome_sign:

This response has a potential solution to this problem.

I exhibited all the same symptoms as described by many of the responses here. It started a week ago and I lost all confidence in my left foot - specially when transitioning from carpet to cement or wood. Or from dry cement to wet cement. The sensation would occur multiple times a day.

I took Methyl B12 shot, and it completely alleviated the problem. There are various places in major cities in the US where you can get a shot for $40 to $50. Taking the pills are not as effective as an injection. It appears there are also sites that provide you the information and Methyl B12 to give yourself the shot. You can also ask your doctor for a B12 shot.