Hi Rosy,
I certainly can understand how you feel and what you have been through. I also have idiopathic small fiber PN and have had it for over 20+ years only bothering to get it diagnosed in 2016 because of the numbness seemed to be spreading faster. I don't have pain so have not needed medications but have spent a lot of money on many things that have not helped. What got me started looking at nutrition as the answer to at least slow or stop the progression of the numbness was a book by Dr. Terry Wahls – The Wahls Protocol. She has an amazing story that you can read here: https://terrywahls.com/about/about-terry-wahls/.

Full disclosure ☺ — The group is working on their own product to be available sometime in 2020. This came about because many of us really have a problem taking so many pills – 22/daily. The new product will combine some of the supplements into about half of the number of pills which hopefully will make it better and the cost should be about the same – around $6/day.

I honestly don't know if the protocol will work for you even though it has helped myself and many members of the group. It is definitely worth a try if nothing has helped you in the past. I don't believe it's an overnight thing where you start taking the supplements and the next day your symptoms are gone. I think it does take awhile and you have to stick with it. I didn't see any difference until after 2 months on the protocol when my numbness seemed to decrease. I haven't had any progress since then but it also hasn't gotten any worse for me which is what the neurologist told me would continue to happen.

Hoping you have a great weekend also. ☺

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I haven’t posted in awhile deciding to wait until I’d progressed further with my visits at Mayo which started two weeks ago. For those of you who knew I was going, just know I’ll post more when I know more.

But I wanted to weigh in briefly on some of the recent posts about scams and the Protocol group.

It seems that John and other MayoConnect mentors wouldn’t be recommending treatments such as The Protocol or Myofacial etc if there wasn't evidence behind the treatments, albeit somewhat anecdotal.
After all their names are associated with Mayo Clinic, which has its ethical and medical reputation behind this blog site.

We all have to make our own choices about what to try and not, and yes it’s exhausting and can be very disappointing. But the value of a blog like this is to share information and learn options (conventional and unconventional) that our “regular” docs might not know or support yet.

Let’s keep trying and sharing and give our docs the good feedback so they can get on board. Maybe eventually they’ll be able to push the insurance companies in the right direction too. 😉

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Yes. My name is John S. I have tried a lot of things. I am going to try the stimulator. Has any body tried this, and did it help?

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Perhaps myofacial release to help release tightness in the fascia and get blood flowing. Some self manipulation as well. Gravity may help which I learned here in the forum… If you are able to lay on the floor (or your bed) and pull your legs straight up to rest against the wall. As much of a 45 degree angle as possible so blood flows down. I do a number of these things for my aching, cramping, numb legs. Can't go wrong with Tumeric either like @johnbishop said. All the best to you. I hope something brings a bit of relief.
Rachel

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Thanks. I have just started to investigate the John Barnes method of myofascial release for my progressive myelopathy. It looks promising – without throwing another prescription drug (complete with unwanted side effects) at this ongoing problem. Does anyone know if there is a mfr therapist at the Mayo Clinic – Rochester. MN?
One year ago a spinal angiogram and a PET scan of the body both were negative for an underlying etiology; two spinal taps also showed normal results. My latest MRI of the thoracic spine still shows the white line (a long segment of "signal abnomality") with no relief of constant numbness in lower extremities. Neurologist recommends a "steroid sparing agent" (this after a 5 month course of a 60mg daily regimen of prednisone) for a 6 month period: mycophenolate (CellCept). This drug comes with a long list of side effects. I do not want to go through another period of potentially seeing no benefits but experiencing numerous risks (this drug comes with a "black box warning.")
I am scheduled to see a PT at Mayo in a few weeks. I am hoping I can get one who knows the mfr therapy.
Any advice or other suggestions are more than welcome.
Thanks for listening.

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@margottaylor, First and foremost, thank you for checking in about your November Mayo visit. I know it is often more challenging to wait without knowing than it is to deal with the outcomes. It is wonderful that you want to share your information with Connect members so that all may benefit. Knowledge is power, especially as we deal with many roads to travel on what for many of us, is a new and bewildering journey.

Secondly, thank you for the cogent manner in which you reiterated the mission guidelines that every mentor and moderator are committed to maintaining in their efforts to support and foster quality of life for members. May you have a day of comfort and ease. Chris

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@upnort I was also looking for an MFR therapist in the Rochester area but specifically wanted one that was an MFR Expert trained by John Barnes. The Dan Abraham Healthy Living Center on the Rochester Mayo Clinic Campus has massage therapist that list myofasicial release therapy but I have no idea if they have really taken any of his classes. @artscaping sent me the name of an MFR Expert from Onalaska, WI – Heather Hammell who I have been thinking about seeing for some help with lower back pain. You might want to ask the Mayo therapist at your appointment as they may have contacts.

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Thank you so much. I shall seek and find!

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I have also heard so much recently about The Protocol. What is it, and where can I find information (blog?) that might be of help to me in my continued search for some answers to my progressive myelopathy?

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Hi Rosy,
I certainly can understand how you feel and what you have been through. I also have idiopathic small fiber PN and have had it for over 20+ years only bothering to get it diagnosed in 2016 because of the numbness seemed to be spreading faster. I don't have pain so have not needed medications but have spent a lot of money on many things that have not helped. What got me started looking at nutrition as the answer to at least slow or stop the progression of the numbness was a book by Dr. Terry Wahls – The Wahls Protocol. She has an amazing story that you can read here: https://terrywahls.com/about/about-terry-wahls/.

Full disclosure ☺ — The group is working on their own product to be available sometime in 2020. This came about because many of us really have a problem taking so many pills – 22/daily. The new product will combine some of the supplements into about half of the number of pills which hopefully will make it better and the cost should be about the same – around $6/day.

I honestly don't know if the protocol will work for you even though it has helped myself and many members of the group. It is definitely worth a try if nothing has helped you in the past. I don't believe it's an overnight thing where you start taking the supplements and the next day your symptoms are gone. I think it does take awhile and you have to stick with it. I didn't see any difference until after 2 months on the protocol when my numbness seemed to decrease. I haven't had any progress since then but it also hasn't gotten any worse for me which is what the neurologist told me would continue to happen.

Hoping you have a great weekend also. ☺

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Well said Chris and I love your new photo!

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Thank you Rachel @rwinney. I really didn't think anyone would notice the photo. This one is just last year not last era. That's my first step-grandson. Go figure that one. Must be because I know his grandfather very well. I think of you frequently, and how helping others seems like a spark that charges your engine.

Have a lovely sleep. Chris

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