PN: Current research?

Ray,
I don’t know if you’ve visited the “INF" section of this website about the research/treatment being given at Loma Linda University and Medical Center in Calif. Their claims and testimonials, though limited, make it sound too good to be true. Which we usually need to be careful of. But LL is a highly respected, legitimate medical university and I want to believe that they would not risk that reputation by running a scam. But you never know.
https://connect.mayoclinic.org/discussion/nerve-treatment-anyone-tried/?pg=1#chv4-comment-stream-header
I am hoping to go to Loma Linda for the initial evaluation and treatment using the INF, Intranural Facilitation Therapy. https://lluh.org/services/neuropathic-therapy-center/blog/what-you-need-know-about-intraneural-facilitation-inf

I live about 7 hours away in the Silicon Valley area of Calif. But I starting to have the numbness balance issue on and off, some days pretty bad. I'm having some issues trying to get someone to drive me there since I’m getting leery of my driving abilities, and my circle of friends is now very limited, since about 7 of my close friends have left Calif in the past few years. But that’s another story.

So since you were talking about research, I thought I’d send this to you. Have a great 4th! I enjoy you writings.

Dave

Hi, Dave

Thanks for this information and the links. Tomorrow when I've more time, I'm going to look carefully into this. You're right, I doubt Loma Linda would risk its reputation on something they didn't fully believe in, which makes their involvement all that more fascinating.

A Happy Fourth to you, too, Dave!'
Ray (@ray666)

I ordered Nooro NMES today, Check out their Website. Seems to be to good to be true. Has return policy.
I have Neuropathy about 4 years. Good luck, will report my findings after trying it.

Wonder if a go fund me would work. You got people who say they have a splinter in their vbig toe and end up with 200k

Good morning, gba (@gba)

Please do report your findings.

When I read what you wrote, "Seems too good to be true," I smiled. There are so many "quick fixes" out there, especially online, I find I'm telling myself "Seems too good to be true" a half-dozen times every day!

Good luck!
Ray (@ray666)

Good morning, Ray
You might also check out two others, Walkasins and scrambler Calmare. Both have good reviews.

How many of you with the numbness and balance issues are still able to drive? Does the state take away your license or did you voluntarily stop?

@dpso - I'm asked same question by family and friends, and I drive fine. Since I have PN with bilateral drop foot, I was prescribed AFO's made by Ottobock which eliminate the slapping of the foot and provide me with much better balance. I can feel the pressure of the gas peddle and pressure on the brake. I think the AFO's help a lot. I also don't drive more than 90 minutes without getting out and walking around for 5 minutes. Also, hand controls might be an option. From what I've read, good idea to have a certified dealership for that made vehicle install the hand controls. Ed

I have enough feeling and security to know I’m lifting my knee/foot and can feel the pressure against the pedals. However, I only drive in daylight for the added safety of knowing I can glance down at my foot. As for state driving requirements, I believe there’s been a checklist of questions when transferring states 3 times, but none that I had an answer for that had them questioning. I think the only thing they deny is if you can’t pass a vision test, which might be be increased to every 5 years vs 10 yrs when we hit a certain age.

Hi, dpso (@dpso)

I've no problem driving. Of course, I'm unaware of numbness, although the EMG insists I've got some. I'm only troubled by poor balance––poorer at some hours of the day than others. Something Michael J. Fox said in his latest memoir, No Time Like the Future, about one of Parkinson's more curious effects, has stuck with me. Fox said that as challenging as it is for him to walk a straight line on a flat surface, he has far less difficulty going up and down stairs. He believes something is exacting about the "geography" of stairs that tells his brain, "Put your right foot exactly here, now your left foot exactly here, now your right … " I suspect there may be a similar exactness about driving that (at least for me) temporarily clears away the inexactness I contend with when I'm simply trying to walk down the street.

Ray (@ray666)