No wonder there is so little being done about Neuropathy!

Sorry I did not follow through on my promise. I took Tru Niagen for 6 weeks and saw no difference in my neuropathy pain, and I gave up at that point. Perhaps it takes longer to make a difference.

I should add that I am exploring other options. Specifically, I have a genetic mutation referred to as SDHB Ile127Ser, and my doctors are going to do a test to determine whether it is causing mitochondrial dysfunction which would trigger an inflammatory response and lead to neuropathy. Also, I am going to have my whole exome sequenced (all 20,000 genes) to try to find a cause of the neuropathy. I've previously had 72 genes tested and they all (except the SDHB) came back normal, so now we're getting out the big guns. Getting an exome sequenced costs <$1500. The hard part is getting a doctor to determine that it is medically necessary.
Margaret

The reason is simple. Big pharmaceutical companies are fearful of a cure or great general relief procedures like the one I am practicing ,Neuroplasticity , will be successful without the use of ANY of their products. I am progressing without the use of any, repeat, any pharmaceutical products

WHAT EXACTLY IS IT AND WHAT DOES IT DO

Hi @jesfactsmon
I have experienced the effects of Neuroplasticity for Ataxia (balance) problems. I staggered when I walked and bumped into walls, and required a cane to prevent falls. My doctor sent me for Physical Therapy (at a local hospital well known for Rehabilitation for severe accidents and brain injuries called Mary Free Bed in Grand Rapids, MI) for Balance and Gait Training. The DPT (Doctor of Physical Therapy) I worked with explained that you can retrain the brain through PT. I used bands to strengthen my ankles and muscles in my lower legs, used balance devices and stood in a corner (to keep from falling) while practicing balancing on one leg at a time. I also did calf stretches on a wedged board that is similar to doing calf stretches before running where you are leaning towards a wall from a few feet away with one foot flat on the floor. I also stood in front of my kitchen sink with the cabinet door open so I could touch the toes of one foot on the shelf for stability while balancing on each leg to improve my balance. It worked and my Ataxia improved where I could walk without a cane.

@jusfactsmon
Re: Neuroplasticity Training
I forgot a couple of other exercises I did to restore balance during PT for Ataxia was to do heel to toe walks between the parallel bars to catch myself if I fell and walking up and down the PT small stairs (4 or 5).

Hi Barry @user-che214927 I would agree with you as I also believe In neuroplasticity and prefer it over medications. Unfortunately the reality is people want a quick fix despite side effects from medication(s). Most people would go for an easy fix and not be patient as you have been. You are remarkable at your age to be so determined and consistent with the exercises. I wish you well. I know you will persevere! Go for it!

Hi @njh I have imbalance issues as well and found physical therapy and neuroplasticity to be very helpful. PT had me do the same exercises plus practice walking backwards and forward. Besides using stairs I also did exercises with a stepper as used in step aerobics. Because of my imbalance I was in a wheel chair at first but slowly after practicing neuroplasticity I am now using a quad cane. An uneven surface such as a lawn is very difficult for me but everyday I walk( with the quad cane) in my backyard which has inclines and declines, very challenging. I find the walks have become easier. I plan to continue improving my balance through neuroplasticity. Part of my imbalance issues are from double vision( i.e. diplopia or strabismus). I will be having the corrective eye surgery in the coming new year. I also believe in neuroplasticity. Keep practicing balance exercises for your brain to relearn. Perseverance will lead to improvement. Don’t give up! Wish you well.

Hi @avmcbellar
I’m happy to hear your balance was improved by Physical Therapy for balance …which retrains the brain through Neuroplasticity. I also had vision problems for several years from Fuchs Corneal Dystrophy and Cataracts in both eyes which was resolved in 2014 with DMEK Corneal Transplants in combination with Cataract Surgery. Within a few weeks I was very fortunate that my vision was returned to 20/20. During those years with vision problems it affected my balance too.
I had ghosting after the surgery while my eyes healed, which is similar but not as bad as double vision…but it affected me. I wish you the best possible outcome for your eye surgery and I hope it helps your balance too.

Thank you so much @njh I am glad you eliminating the ghosting and your vision was restored. Besides our ears I believe the eyes play a major role in achieving balance as well. The eyes send a signal to our brain for proper head placement. I have a difficult time in controlling head movement since my eyes can’t focus on the same image. Did you experience that also? I get the nausea associated with motion sickness. It seems when I practiced neuroplasticity( for 4 months daily) to correct my vision, my motion sickness got worse. My bad eye was slowly shifting to align to the other eye. As a result I felt it more in my ears. It has now been 5 months since I have stopped the daily eye exercise routine. My motion sickness has returned to normal i.e. prior to the start of the eye exercises.
How is your balance? Do you still require a cane for walking?