I know you are not going to like this comment, but I have to say it.

Can you find another form of exercise besides the bike?
I ask because the recumbent bike at the gym I go to was awful on my feet and left ankle!

I think LP refers to lumbar puncture. (this can reveal MS or autoimmune factors, and sometimes they test for B12 in too)

I would love to dump the bike, but for me it seems to be the best choice.
I am open to other sugestions though.
My Lumber Puncture didn't show anything helpful.

Many people have been on this board and its predecessor who have used water therapy, swimming and water aerobics
successfully.

And one of them was a DOCTOR (a midnight ER physician who also was a bicyclist). He claimed it was a "cure" for him!
That was about 5 yrs ago. But some here do use swimming
to help.

Yes I have allways loved swimming & will get back into it when it gets to cold to cycle. But I don't find it works my legs & ankles as hard as the cycling.

If you have a professional bike fitting service, get it done again if you have not had it done already. I have bad neuropathy. I used to do sprint tri's. My autonomic nervous system was affected and now I can not run at all due to the hypotension. I was completely unable to bike last year, but this year, maybe with the IVIG treatment, I perhaps can get some exercise.

Anyway, your proprioception could be off, and you should have your pedal stroke looked at. Keep in mind you won't feel your feet getting sore or things rubbing holes in your skin....and your hands likewise.

Wishing you tailwinds.

Cycle :Wheel:lops

Thank you cyclelops.
I have a farely new good quality bike with full suspension.
It is set up for my build & no-one else uses it.
I usually do about 12 killometers on a run, mostly off road, so the body gets a fare veriety of movement.
My PN is not severe enough to prevent me from doing everyday things.
Just makes them feel a bit awkward.
If people ask me how it feels, I can't really explain it.
A classic example is doing up the buttons on my shirt cuffs.
Instead of doing it by feel I now have to have to put my glasses on to see what my fingers are doing.

I agree about pool walking or can you even just walk outside or in a mall? I know for me they told me though I have PN and RSD so am a little different how key range of motion is and strength training so I am wondering if you would benefit too from something like that. In addition hand excersises. Have you ever worked with a PT person?

Just a note: denture cream use has been linked to neuropathy. Long-term use of denture cream results in exposure to large amounts of zinc, which can cause neuropathy. Exactly what "long-term" use amounts to is an open question at this point.

I have created 2 other threads on this subject, you can do a search for them if interested, or PM me.

MrsD, since my B12 was last tested at 690, would I still benefit from a supplement?

How I wish I had access to a pool. I have read not only on this site, but from other people, just how much swimming has improved their condition.

I think that 690 is suspect, altho it does fall in the low-normal range.
B12 supplement wouldn't hurt, and you might benefit from it.
You cannot overdose on B12- excess is excreted, just like vit C.
In the Methyl form (methylcobalamin) as opposed to cyanocobalamin,
it is more readily absorbed by the body.
I take 1000-2000 mcg (1-2 mg)of methylcobalamin per day, sublingual.
It has brought me up to 1100-1200 when last tested.
I've been taking it daily for over 7 years.
I get Jarrow brand form iherb- it is fairly inexpensive, if you get a 3 or 4 mo supply.

My tread mill and recumbant bike are gathering dust. After much whining and begging last June my husband bought me the Catalina Swim Spa for my birthday, it was on sale for 17,000.00. He is in the trades so pouring a 10 inch slab of concrete into the middle of our back deck was pretty affordable. We keep it at 100 during the winter months and about 95 from now through summer, maybe lower if it gets real hot. My point is I bought the foam workout set with flatation belt and dumb bells and incorporated what I learned at warm pool therapy into my workout at home. My spa is 8x16, with half of it being a hot tub if you put in the divider, we never do. It has 3 river jets you can swim into but I end up being swirled around the pool with my grandkids having a blast. After battling pine needles and the like we started closing it in last fall, saving up money for the windows, so it will be my dream room....Did I mention that for 150.00 a boom truck put it in place in under 15 minutes? When my husband balked at the price I mentioned it was half what we paid for my pickup and wouldn't you know who spends the most time in there now??? Also I can run in there, in place of course, but it's possible to buy a treadmill if you so desired. I have no regrets on this expense plus with a letter from each of our rheumatologists it made for a pretty nice tax writeoff, it's been a lifesaver for both of us.

The main reason I revived this thread was to get some feedback on the progression of my PN. Hopefully from someone who has been through this stage or has a similar case to me.
I realise it can be different for everyone but was hoping someone may be able to advise me on further progression.

Thanks Bob. I think it is important that I take B12 for sure. I am also concentrating on the supplements mentioned in the stickys. Hearing how some have shown impovement and healing from taking their supplements, and taking good care of themselves gives some much needed hope...

I have had idiopathic PN for 20-30 years, I am 62, however it was not formally identified until 11/05 during a work up by a phsyiatrist (spelling may be off a bit), an MD specializing in physical medicine. This work up was pre-surgical in nature for severe stenosis. He was trying to sort out exactly where the spinal cord was most restricted as the stenosis is effecting far more vertabrae than can be safely operated on. At the time my left foot was not sensing pressure and the right foot was not far behind, as expected my balance and walking ability was severely impaired. I also, leg pain and leg sensory problems. The laminectomies releaved many of the symptoms of neurological impengement and I rapidly regained much of my balance and feeling in both feet except the toes. Since then the idiopathic NP as has gradually accelerated. By 3/2008 it had progressed up both knees and feeling on the skin is gone on large areas around the knees, by 6/2009 I noticed that I was dropping things, particularly really smooth things like plates, the communion wafer at church, glass wear etc, it had jump to my arms and by 9/2009 it had enveloped all my epiderm up to my jaws. Since then there is no place left that does not have the NP, my entire periphery is effected now. I have seen two neurologists and another French physiatrist. All four MD have independently examined me, each in considerable detail and came up with same diaqnosis, plus the neuropathy has extended into nerves that control my leg muscles, it is no longer strictly peripheral. To avoid using a walker I went to White's in Spokcane, WA and got knee high boots fitted. Snugg leather boots, tighly sinched plus four years of PT have kept me going with no little difficulty. For me NP is very fast moving now, my neurologists point out that I am a long way down the road (perhaps 30 years) most folks have onset in their late 50s and don't get to where I am until they are 80 or 90. I don't rightly know if that is true or not as my daughters' soccer coach is much younger than I but is in much worse condition. This NP frequently remits so people improve, next year you might accomodate and feel significantly better. Through PT I aggressively try to accomodate the advances, it is not easy.

Here are my questions, to any of you that are a long way down this road, are you having trouble sleeping, or needing excessive sleep. I tend to require 12 or more hours per day and I still feel I am in stuper. I am on a host of antioxidants and vitamins and neurological meds. As this progresses I seem to require enormous amounts of sleep. Also, low pressure systems really excite the problems. Only thing I get from my MDs is that most people are not doing as well as I am at this stage. Has anyone found these sleep problems and how are they accomodating them, besides sleeping all day

Don't get dscouraged, everyone thinks their experience makes them an expert. It is called idiopathic NP because they have not gotten very far in finding a cause or universal treatment. My MDs have me on loads of vitamins and other suppliments and we have tried the recent meds used for the conditions, they work for some, but not all, everyone is different. Its a trial and error issue. But don't forget Physical therapy and things like boots laced up to you knees. I found that a pair of $200-300 boots custum fitted for me allowed me to forego a walker and greatly reduce my dependence upon sticks. Physical therapy has focused on transferring my balance more towards vestibular and visual. But I have severe visual problems also, but it all helps. If you are uncertain about your neurologist get a second opinion or third, this is not a simple problem and it can get really awful as I am sure you are aware. I am headed for more spinal/neuro surgery to releave the neuropathy generated by stenosis etc, it is a long battle. Remember Medicine is more art than science when it come to diagnosis. And by the way everyones experience is important. I love my boots, I can walk again!

Thanks for sharing that with us Roy.
I'm sorry I can't help you with your questions, yet.
I'm sure someone else will though.

I'm just starting to get another problem.
Don't know if it is conected to my others.
I am getting mild pain in my Coccyx.
It is tender all the time & can be uncomfortable to sit up straight sometimes.

The coccyx problem possibly could be related to change in gait, and sitting posture, due to pain in feet, legs, hips.

Fortunately I have no pain since I've been on the B12.
My gait & posture so far hasn't been affected.
Although if this problem with the Coccyx gets any worse I may have to sit differently.
My main worry at the moment is my right hand. I still have full use of it but it is getting very unfeeling. When I am typing now I have to look where my fingers are going. Also I find some Dyslexia coming into my typing.

Thought I'd better get back onto my own thread.
I am concidering adding Lipoic Acid to the B12 I am taking, in the form of Javenon.
As yet can't find any in this country.
Can get Alpha Lipoic Acid in 200mg capsuals.
Not sure if this suitable, so havent bought any as yet.
Another name has has just been given to me, Lephratax.
Looks worth concidering on google.
Did a search for it on this forum but nothing came up.
Anyone have any experience with it or know if it may help with my problem.

Hi there

I noticed today when I was out shopping for a new walker (which i think I have chosen woohoo) - anyway, I saw some coccyx cushions. They had a wee hole to position one's coccyx over. So, if you get to the point where sititng becomes difficult, then maybe you could invest in one of these.

I am not sure what part of NZ you are from, but I found these in Auckland so I am sure they will be available all over the country.


cheers
raglet

Hey thanks for that, but I'll be trying my hardest to avoid having to get one.

Holy Smokes....that is expensive!

I believe iherb.com ships to New Zealand.
http://www.iherb.com/info/shipping/ShipNZ

You'd do better with r-lipoic acid (improved Alpha lipoic) and benfotiamine IMO.

Thanks mrsD, I'll sorce some of that.
Any thoughts on the Lephratax.

I don't get a good feeling for the Lephratax.

When herbs are used, they are NOT used in milligram amounts.
All those herbs listed are teensy amounts. Any active ingredients, which I don't have the foggiest as to validity, would be in there in ultra teensy amounts (microgram perhaps).
http://lephratax.com/ingredients.html

I just don't think it is worth the money. I haven't had time to search all the ingredients.

You can search at this location:
http://cms.herbalgram.org/herbstream...onE/index.html

Commission E is the world gold standard on herbal extracts.

Thanks for that.
Found a NZ supplier for "Doctors Best, R-Lipoic Acid" & have ordered some.
$45 for 60x100mg.

I know how you feel.
 

Whoa!
Man can I empathise with you. I am a 52 year old male who started having problems about 3 years ago. Problems started in my right hand - numbness and burning and pain got so bad that after 2 hours of mousing (right handed machine designer) that I felt like throwing up and then started gabapentin - 900mg/day. Diagnosed as occluded ulnar nerve and had double surgery on my wrist (2" cut) and inside forearm (6" cut thru muscle) to cure the problem. Worked for about 6 mo. and then all problems came back progressed up past my elbow. After about 12 mo. it appeared in my right foot and started with the big toe going numb and then the whole foot followed (with shooting pain from the toe back to the heel). Next the left hand on top up to the wrist and left big toe and top of foot up past the ankle (all within about 6 mo. time).
I am now taking 1200mg gabapentin 3 times a day to control pain but if I miss a dosage pain in feet and right hand reminds me - aldo have burn thru even with this dosage. I was diagnosed last week with Small Fiber Polyneuropathy at the Cleveland clinic. I also have hypertension (160/100)
that is partially under control (was 240/110). A little anti anxiety medicine helps as well. Good luck and keep a posoitive attitude and I have found that sharing with others helps quite a bit - I used to keep it all inside but that is not the way to go.:D

Hi Kevin
Sorry to hear you've joined the club.
Sounds similar to me.
I found the pain stopped after I started on the B12.
Not saying it cured it, but thats when it stopped.
I have got pain relief but don't use it at all.
Was any cause for your Neuropathy found.

I see it's been 4 Months since I updated this thread.
Well the 60x R-Lipoic Acid went through the system un-noticed, so I've put them on hold.
There has been no noticable changes in my symptoms in that time.
I am still fortunate that I don't have any continuous pain. Occationally I might get a servere cramp like pain in any of the effected areas, but it only last a few seconds.
Regarding driving with an effected right foot. I can feel pain, moisture & temperature but not pressure. So I have a few problems driving a vehicle with a manual transmission.
Anyone else been down this road? (no pun intended)

Numbfoot
I have been suffering from idiopathic peripheral neuropathy for about four years. As a general rule the ideopathic variety of peripheral neuropathy does not get worse.
I have not seen any posts about how family members have reacted to the chronicity of this invisible condition?

Just an update.
I am a few months late replying to the previous post.
My family is very understanding of my condition.
We are fortunate that we are not directly reliant opon my income.
However I do still manage to generate a few dollars.
I have also taken over the cooking & have even managed to turn out some cookies & cakes.
My condition seems to have stabalised & hasn't changed much in the last 6 months.
I still take the B12 every morning.

peripheral neuropathy
 

I have PN and am 46. Mine is from disc in my cervical spine that are pushing on nerves and disc in my lumbar spine along with spinal stenosis that are pushing on nerves. It can be very painful at times. I take amatriptyline 75mg every night it has helped me very much with the nerve pain in my arms and hands at night.

i have a lot of muscle spasms in my legs, i lose all feeling in my legs and feet when i walk very far. I have started using a cane because i feel so unstable at times.

I do not have insurance and i have been denied disability but have not stopped trying. i have a hearing sometime this spring or summer coming up again.

Its an awful feeling to have this.And feeling like i am never going to be able to get any help.
i get really discouraged with it all at times.

it feels good to just see others here who do understand.

Thought I should update this thread I started.
PN has now progressed into my hands. Problems with temperature control & holding on to things. Trying to do up buttons is awkward. Still no pain fortunatly. Don't know if that is a result of taking the B12 but are not going to stop just to find out. In fact are going to up the dose from 1000 to 5000 & see if it helps.
During the latest tests they found I had prostate cancer so had to get that chopped out last year. Now any woman is safe to be with me.
Just sitting here on my hands pondering what to write next.
Once I got the all clear from the cancer, my wife & I started a new business which keeps me busy & takes my mind off my problems. So I will chug away at that as long as my health permits. I know, if I just gave up & sat around feeling sorry for myself, then I would probably go down hill rapidly.

LYRICA for Neuropathy
 

I have been diagnosed with Idiotatic peripheral neuropathy about 4 years ago. I have numbness in my feet and a heavy burning sensation from my feet up to my knees. My doctors have given me all the tests but nothing indicates why I have this condition. Last year he tried me on gabapentin. I was on an average dose for 8 months and it did absolutely nothing to relieve my pain. I discontinued taking that medication. A few months ago he started me on Lyrica and I felt almost immediate relief. I take 3 50mg tablets a day and I can honestly say about 70% of the burning sensation is gone. However, I still have the numbness in my feet. Nothing seems to work for that. As far as I am concerned I am very pleased with the relief I get with Lyrica. I wish it gave me more relief - i.e. my numbness, but it is definitely better than no relief at all. You might want to discuss Lyrica with your doctor.

I've been diagnosed with Idiopathic progressive neuropathy. I have lost about 80% feeling in my feet and am starting to have symptoms in my hands. The tips of my fingers feel like there are callouses on them and am starting to fumble with things. Walking on uneven ground can be crazy at times and embarrassing at others. The thing that most concerns me is the term progressive. I'm scared that it may move at an aggressive rate and I won't be able to enjoy time with my son (age 2) as I have with my 2 older daughters (ages 15 and 11). Time will only tell.....

Hi everyone. I have also been diagnosed with a idiopathic peripheral neuropathy. Im a 22 year old male from Sydney Australia.

I have tingling and electricity feelings going down my spine and paresthesias over my arms and legs with hot and cold alternating at times.

I just wanted to post so i can talk to others with this same problem.

My life kind of sucks at times, i have little friends and mostly keep to myself and family.

A lot of the times these symptoms make me extremely ****** off and agitated sorry to be blunt and feeling like i want to bash or destroy something when i think about it and i ask myself why me...

My symptoms have mostly stayed the same they are much worse in cold weather and keeping warmer with warmer clothing makes me feel better and i have less symptoms then.

:(

Sorry to hear that.

Your need for warmth.... were you tested for macroglobulins in the blood? This symptom is a sign of increased proteins circulating in the system, which react to cold temps with increased symptoms.

http://en.wikipedia.org/wiki/Waldens...roglobulinemia

Also you can look up cryoglobulinemia, whose symptoms are intolerance to cold.

And--
 

--if you've got tingles going up and down your spine, has the spine itself been MRI'ed or otherwise checked?

Problems with the brain and spinal cord can exactly mimic, symptomatically, those with nerves in the peripheral areas (one reasons investigations into neurological symptoms are often so long, expensive, and process of elimination).

I think you are right. I've been passed to four different neurologists in the same Neurology Clinic in a very prominent hospital in NC. None of them know what is going on. My general practitioner is first to admit he doesn't have a clue - that's how I got to a specialist. I will say that going into the hospital setting each time and seeing others there - I have felt guilty about complaining about my pain - at least I can still walk. But it hasn't gotten any better - just worsens over time. My biggest fear is that I will not be able to walk at some juncture.

That is how most of us feel in the beginning, but many have found that it isn't necessarily the case, with proper treatment, meds & supplements - by docs who are in the know & on top of the problem. If it weren't for that I'd be a bed-ridden basket-case. But now I work 6 days a week and can participate in most of the things I used to. Some life style changes are necessary, but you don't automatically have to be reduced to the status of an invalid.

Sue, I share your fears. I've been to six, and not only have none of them even come close to addressing the pain, but in four years, I've gone from an active, healthy person to someone who can barely climb one flight of stairs. The way it's going, I wonder how many more months I'll be able to do even that.

How is it possible that nobody can even tell you why?