Peripheral Neuropathy Improvement?

I have peripheral neuropathy in my feet. The front 1/2 of both feet are always numb. The discomfort/numbness can go up as far as my knees. I usually walk with a rollator because I do not always know where my feet are or where they are coming down. I have fallen down stairs and even broken a leg. That was before Betsey (my walker) and I became best friends. This is definitely hindering my tap dancing career. I have hopes that there may be some improvement over time with my therapy. Has anyone been helped in this area? Thanks for your sharing.
Lynda

piglet14 wrote:I have peripheral neuropathy in my feet. The front 1/2 of both feet are always numb. The discomfort/numbness can go up as far as my knees. I usually walk with a rollator because I do not always know where my feet are or where they are coming down. I have fallen down stairs and even broken a leg. That was before Betsey (my walker) and I became best friends. This is definitely hindering my tap dancing career. I have hopes that there may be some improvement over time with my therapy. Has anyone been helped in this area? Thanks for your sharing.
Lynda

I have Charcot-Marie-Tooth, a peripheral neuropathy, though not as bad as your good self, or my mother (mom is 85, deformed feet, deaf, starting with walker). I'm 55 and have just partial numbness in my feet, some body aches. I've seen no positive effect from sleep apnea treatment, unfortunately. Only progression for me.

Piglet - have you tried Alpha Lipoic Acid for your neuropathy?

I've seen this discussed at length on a diabetes forum I'm a member of. Some people get great results, while others aren't helped at all or minimally. It does like a while to build up in your system and you may have to experiment with doses, but IMHO it's definitely worth trying.

I don't have numbness in my feet, but do have that sharp burning sensation and the ALA has reduced that to a point it's hardly noticeable.

Cheers,
xena

xenablue wrote:Piglet - have you tried Alpha Lipoic Acid for your neuropathy?

I know I'm going to give it a try. I also heard that Benfotiamine may be useful. I've only looked in one drug store for both, they didn't have it (Target) so will try Walgreen's or just order on-line.

Max, I'd be very interested to hear whether it helps your condition. I didn't aim my post at you, because I thought Charc-Marie-Tooth being an inherited condition may behave differently. The ALA certainly won't hurt (although it might be wise to check it on drugs.com for any interactions if you take other meds), so definitely worth a try.

One of he guys on the diabetes forum had extremely severe neuropathy and the ALA reduced his symptoms to the point where he has no problem at all with his feet and legs.

Cheers,
xena

Yes, I know I was somewhat replying out of turn, but you mentioned a substance that I was intending to try, thanks. I"m hoping I can find something that can slow the demylination... I have very little pain, thank goodness, though recently a new symptom, like I'm walking in wet socks. LOL.

piglet14 wrote:I have peripheral neuropathy in my feet. The front 1/2 of both feet are always numb. The discomfort/numbness can go up as far as my knees. I usually walk with a rollator because I do not always know where my feet are or where they are coming down. I have fallen down stairs and even broken a leg. That was before Betsey (my walker) and I became best friends. This is definitely hindering my tap dancing career. I have hopes that there may be some improvement over time with my therapy. Has anyone been helped in this area? Thanks for your sharing.
Lynda

Reply,

I came down with PN in the soles of my feet 2.5 years ago when I also got the OSA. The numbness does not go above my ankles.
I did rehab for 4 month (walking on obstacles) and also Anodyne radiation to the soles. It was mainly for Balance while walking (especially in the dark.)
It did help in this regards.

The experts are here:

http://vestibular.org/

I take daily 300 mg Gabapentin (generic Neurontin) which also helps sleep.
I have yet to try taking tablets of Metanx suggested to me by a Podiatrist.
So far, most helpful for me is walking, at least half mile daily, preferably over uneven grass (golf or soccer fields,
In the soccer field, during the week days, I walk over the marked straight lines, and try not to lose my balance).

p.s. we lose our balance b/c we don't get feedback from our soles, and so we rely only on our eyes.

Have you tried MBT shoes? They're amazing - built with a rocker in the middle, but not the 'cheap' Sketcher's kind - these are the originals (but get them FROM MBT, not somewhere else, because China recently flooded the market with crappy knockoffs). Actually MBT recently kind of shut down, but many dealers still carry them and the guy who invented them has started a new co. The shoes are VERY expensive, but.. I literally have been wearing one only pair of the shoes every single day for 8-9 years now, the first pair lasted 6-7, I'm on the second, and got a third pair recently to hold for when mine wear out (takes forever!!) and I can no longer find them on the market... They take some getting used to, feel unstable at first, but do magic things for your feet, back, legs, everything! http://ca.mbt.com/Home/Benefits.aspx

piglet14 wrote:I have peripheral neuropathy in my feet. The front 1/2 of both feet are always numb. The discomfort/numbness can go up as far as my knees. I usually walk with a rollator because I do not always know where my feet are or where they are coming down. I have fallen down stairs and even broken a leg. That was before Betsey (my walker) and I became best friends. This is definitely hindering my tap dancing career. I have hopes that there may be some improvement over time with my therapy. Has anyone been helped in this area? Thanks for your sharing.
Lynda

Hi Lynda!

I learned to do two things.

1. To download and view my CPAP data in SleepyHead and check my minute volumes, periodic breathing, and flow waveform for signs of CO2 maintenance issues.

2. To do pulse oximeter guided breathing (a form of eucapnic breathing retraining) along with other special exercise to keep my CO2 levels up to where they shold be (breath less - enjoy life more) - which apparently does help me while using CPAP at night.

For you I think I should mention two good results:

1. A nasty toe nail infection has been clearing up and the new tissue looks great.

2. About a year after starting the above my need for CPAP pressure went from 15 cm/H2O to 8 cm/H2O - current AHI=0.83 with the thirty day average AHI=1.93.

FWIW

Todzo

I am overwhelmed with the wealth of good info to try:

xena- How much alpha lipoid acid? I will look on line to see if there is available research. Also, sounds like the diabetes forum is helpful- may I have their link?

Max- I have been taking benfotiamine (drugstore.com) for several months. If it's helping, it is not highly noticeable.

avi 123- Balance is, indeed, the HUGE issue and the root cause of my falls. I am taking 1200 mg of Neurontin daily r/t auto-immune issues. (fibro/ RA)- the walking is my aim also but I don't always manage to do it. I will investigate vestibular.org. Any port in a storm!

julie- I am ready for new shoes. I consider them the base of the body. Thanks for the MBT avenue.

todzo- I just put the SH software on my MACbook. I have the PR software on husband's PC. Now I have to figure out data transfer and interpretation. Original script is 14/9 cm H2O. I understand that on paper but I don't yet really grasp what to do with or about it. I believe Pugsy and all of you will help me with that. The exploration of eucapnic breathing - pulse oximeter guided breathing sounds promising.

THANK YOU TO YOU ALL. I will keep posting. I hope you do, too. A shared problem. Lynda

piglet14 wrote:I am overwhelmed with the wealth of good info to try:

xena- How much alpha lipoid acid? I will look on line to see if there is available research. Also, sounds like the diabetes forum is helpful- may I have their link?

Lynda,
I take 200mg of ALA a day - however my foot pain is minor and I have no numbness - YMMV - you will need experiment, possibly with much higher doses. As I said earlier - some people benefit from ALA, others don't - but this could also be perhaps because there should have been more experimentation.

I was Dx'd with T2 diabetes 2 yrs before OSA - and that forum is just as wonderful as this one. http://www.diabetes.org/ - just click on Sign In, then follow the instructions to register. I use the same name - xenablue - both places.

Cheers,
xena

piglet14 wrote:Max- I have been taking benfotiamine (drugstore.com) for several months. If it's helping, it is not highly noticeable.

OK, thanks. "Several months" should be sufficient to sense a difference, but maybe also it's intention is to slow the progression, not sure. I'm not sure when I might start trying it and ALA. I'll see if I notice any difference. Our neuropathies are likely different, even in only Charcot-Marie-Tooth itself there are many genes involved, so can manifest in hugely different ways, not to mention all the other forms of neuropathy.

I have peripheral neuropathy in my feet also, the front part of my feet are numb and they would burn all the time. My Podiatrist first put me on Lyrica and I didn't like it so he put me on Metanx Tab and that did the trick. My feet don't burn anymore and the numbness has been significantly reduced in my feet enough that I can get through the day fairly well. I am not diabetic so that part on the the web site doesn't apply to me. http://www.metanx.com/ I also have to wear socks at night cause I can't stand the feel of the sheets on my feet. You might ask your Doctor about Metanx Tab. It is a prescription drug and it's called a medical food.

squid13 wrote:I have peripheral neuropathy in my feet also, the front part of my feet are numb and they would burn all the time. My Podiatrist first put me on Lyrica and I didn't like it so he put me on Metanx Tab and that did the trick. My feet don't burn anymore and the numbness has been significantly reduced in my feet enough that I can get through the day fairly well. I am not diabetic so that part on the the web site doesn't apply to me. http://www.metanx.com/ I also have to wear socks at night cause I can't stand the feel of the sheets on my feet. You might ask your Doctor about Metanx Tab. It is a prescription drug and it's called a medical food.

Comment,

I have a vial (90) of Metanx that was prescribed by my friend the Podiatrist, but I have not started it yet. Good to hear that it works. I am delaying taking it b/c of the many Rx that I already take. I don't have burning in my feet. Only partial numbness in the soles. Once in awhile a a toe or other part of the soles hurt a lot for a minute or so. I also wear socks when I sleep. This is b/c of cold feet feeling. But the warms form the socks keep the fungus in my toenail too happy. Being a border line Diabetic (A1C = 6.3), I should go again to the Therapeutic Pedicurist who works for the Podiatrist. She cuts my fungal toe nails. I can't reach all the toenails myself, but I would not trust a regular (non medical) pedicurist.

squid13 wrote:You might ask your Doctor about Metanx Tab. It is a prescription drug and it's called a medical food.

Prescription food. That's novel. My sleep doc is a neurologist that does neural velocity tests so I'm going to talk to him later this month about my neuropathy and see if he "does that stuff" too. I'll ask him about his experiences with Metanx. My internal medicine doc officially diagnosed the peripheral neuropathy in me, but he says we should do nothing because there's nothing to be done, but from your experience there may in fact be things that can be. Tho I don't have pain from the neuropathy (I don't think... sometimes confused with blown L4/L5 disc, so not fully sure). Thanks.