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