PoNS Therapy May Stimulate Nerve Regrowth

[diggstech]

I have been looking for more information on this and finally I found it so I thought I would share. PoNS (Portable Neuromodulation Stimulator) was developed to help repair brain damage for veterans injured with traumatic brain injury. It is being tested on people with MS, especially the PP (primary progressive) form where the key to improvement is to grow new nerves and make new nerve interconnections.

My own doctors have applied for a permit to run a clinical trial here in Chicago but they are waiting for the local Institutional Review Board to approve it (I think there is some concern about making sure users don't burn their tongues). They tell me it will cost me $1000 (no drug company is subsidizing this) but I think it's worth trying.

I cannot post links yet so you will have to Google "Pons therapy stimulates the tongue to treat ms" or "Train the Brain" to find the articles (one is on Slate).

This could be an important treatment due to the fact that it requires no surgery or implants of any kind. You would still have to be on some kind of DMT (like Tysabri) to stop the MS inflammatory process, but neither Tysabri nor other DMT regrows nerves, so for a PP person that's the other half of the equation to regaining function.

How did I find out about this? From a trivial article about Montel Williams, the tv personality 6 months ago in Parade (no kidding). Apparently he has been PP since 1999 and is a real fitness freak so he was determined to regain muscle function and being a veteran sought out the trial in Wisconsin. You never know where useful info is going to come from.

[dalechilders51]

Diggstech, intersting concept I'll look at it. Thanks for posting it. Take care Dale

[JerryD]

diggstech,
Thanks for the info. I am PPMS, so I will be looking and asking and everything else i can do to find out about this. I am sure if I say this stuff to my neurologist, he will have a good chuckle. i seem to do that to my other 'specialists', also. I had a consult with my cardiologist today and we disagreed on my supplementing with 5000 iu's of vitamin D, i told her that daily. I told her that, in truth, I was actually taking 7000 iu's. She told me that 'she didn't want to muck with something that seemed to be working' ! I then asked her to run a blood test for vitamin D level. We'll see.

[diggstech]

JerryD,

I am PPMS also. I also take 5000iu of VitD3 daily, my doctor actually recommended it because when I was first diagnosed with MS, blood test showed I was D3 deficient. That said be careful about taking too much. If your blood level hits 150 then you may suffer toxicity effects, you can definitely overdose on D3.

BTW, nothing wrong with asking your docs about treatments etc. You have to be proactive. Its not that they don't care, its just that they are really busy. In the clinic I go to, it can take 4-6 months to get an initial appt. So when I have my appt with the doc every 6 months, I make sure and make a list of questions and concerns I have so I don't miss anything during the exam. Take care.

[Seasha]

PoNS!

A friend just told me about the PoNS Therapy and was excited about the research being done. Here is more information that I found http://www.heraldnet.com/article/201...VING/703059973

If you scroll down to More Information it links to a pdf file (TrainTheBrain), it tells of a success story of a collegiate tennis star confined to a wheelchair now back on the tennis court!

It sounds very promising!!
I want one

[JerryD]

If PoNS is virtually harmless and it makes you feel like it is helping you and it can be regulated by the FDA, I don't expect to see it in use in my lifetime.
Thinking this way, gives me a lot to look forward to. Same thing goes for Mesenchymal Stem cell therapy.

[Dale76]

Any updates?

I recently had a friend copy an article about PONS from Mclean's & that led me here.

I see it is an old thread, I would love to hear from anyone who has tried this device. I have found a fair amount about it online but it is all from the med field side of things. I want an honest MS patient's feedback. Anyone try it yet?