Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
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. 😉
@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
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?
Liked by John, Volunteer Mentor
Hi John @johnsticco4 — @jimhd has mentioned using the BR Burst Stimulator in the following post which is in the
> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN) discussion:
— https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/?pg=14#comment-340935
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.
Liked by John, Volunteer Mentor, Jim, Volunteer Mentor
@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.
Well said Chris and I love your new photo!
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?
Liked by John, Volunteer Mentor
@upnort – I posted my story and about the protocol of supplements that helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
You also want to read a recent post by @glenncrawley describing what has helped him in detail and contains a lot of great suggestions on an approach to dealing with neuropathy:
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/?pg=129#comment-342475
Thank you John for all your info about The Protocol. I placed my order today and I'm all excited to begin a new transition into a happier and healthier lifestyle. I'm looking forward to 525 with less pills to take but I need to start now. 🙂
Liked by John, Volunteer Mentor
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
@montieth
I have used a combination of essential oils for years that I concoct myself. I would be most interested to try your formula also.