I went to my cardio doctor and he checked my pulse at my ankles and he only got a faint pulse !
I go back in December for an ultrasound on my legs !
If this has been my problem with peripheral neuropapthy, I'm going to really be pissed off a lot of doctors that should've known how to treat this !
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. 😉
A few years after being diagnosed with pn, I went past tingles and numbness and developed toe aches at night. I started taking R Alpha Lipoic Acid nightly and that aching disappeared. Feet and hands still warm and tingly. I have a patch of about 4"x 10' on my upper leg which was numb, then itchy, then burned and finally graduated to what I would imagine a cattle prod feels like. Made me say ouch out loud. I started with Myofacial Release treatment and, wow, that pain disappeared immediately. It's now been a couple of months and I'm starting to have twinges and will have another treatment. I was very excited that it worked so well. The therapist really seemed to know what she was doing and explained it to me as she went along (it is odd). And, also, Medicare paid for it! I had a Morton's Neuroma years ago - is there maybe some connection with pn? I find this forum to be very helpful. Thanks everyone. Susan
Chris Trout, Volunteer Mentor | @artscaping | Nov 8, 2019
Good evening @susan4567, Welcome to Connect. As you may know already, I can share my experiences with you. However, I cannot diagnose or prescribe any treatments. I noticed your post because the words Myofascial Release treatment jumped right off the page at me. I am an advocate for MFR as well as a recipient of weekly treatments for several years. With small fiber neuropathy (SFN) and chronic myofascial pain syndrome CMPS, I am a very needy patient, It makes a huge impact on my daily living and my emotional state of mind. When the tingles become needles it is time to seek treatment.
My friend, a nurse, has had fibromyalgia for many years. At this point, her legs felt like Pinocchio's, very stiff, and she was unable to touch them.
After a treatment while on a visit here, she discovered her legs for the first time in years. She can touch them without discomfort.
I also like the fact that you can do quite a bit of MFR at home. I use the cranio cradle and the foot supports with the knobs on them to keep feeling in my feet so I can drive. Is that all you are doing to maintain a pain-free existence? Are you using some medications regularly? Have you found any other help with your symptoms?
Thanks for sharing. I am going to put you on my waiting list....as in waiting for more information. Have a peaceful sleep. Chris
A few years after being diagnosed with pn, I went past tingles and numbness and developed toe aches at night. I started taking R Alpha Lipoic Acid nightly and that aching disappeared. Feet and hands still warm and tingly. I have a patch of about 4"x 10' on my upper leg which was numb, then itchy, then burned and finally graduated to what I would imagine a cattle prod feels like. Made me say ouch out loud. I started with Myofacial Release treatment and, wow, that pain disappeared immediately. It's now been a couple of months and I'm starting to have twinges and will have another treatment. I was very excited that it worked so well. The therapist really seemed to know what she was doing and explained it to me as she went along (it is odd). And, also, Medicare paid for it! I had a Morton's Neuroma years ago - is there maybe some connection with pn? I find this forum to be very helpful. Thanks everyone. Susan
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.
Hi @upnort . Will you please let me know if you find a MFR therapist at Mayo when you go in a few weeks? I’m scheduled to see PT there in January and would ideally like someone trained in MFR. many thx and good luck. Margot
Hi @upnort . Will you please let me know if you find a MFR therapist at Mayo when you go in a few weeks? I’m scheduled to see PT there in January and would ideally like someone trained in MFR. many thx and good luck. Margot
I am type 2 diabetic and the neuropathy is increasing. My question is can a person have neuropathy in the ear? The sensation is very similar to what I experience in my hands and feet.
@amazingteal I have a similar sensation and pain in my left ear. Neurologists at Mayo in Rochester literally spent decades trying to treat this with meds. They finally diagnosed it as left auricular neuralgia. I get an injection every 3 months that blocks the nerve delivering the sensation and pain to the ear. I say every 3 months because for me I get relief for that time period. They are actually surprised that this works for that long.
Hopefully this gives you some insight.
Hi @upnort . Will you please let me know if you find a MFR therapist at Mayo when you go in a few weeks? I’m scheduled to see PT there in January and would ideally like someone trained in MFR. many thx and good luck. Margot
A few years after being diagnosed with pn, I went past tingles and numbness and developed toe aches at night. I started taking R Alpha Lipoic Acid nightly and that aching disappeared. Feet and hands still warm and tingly. I have a patch of about 4"x 10' on my upper leg which was numb, then itchy, then burned and finally graduated to what I would imagine a cattle prod feels like. Made me say ouch out loud. I started with Myofacial Release treatment and, wow, that pain disappeared immediately. It's now been a couple of months and I'm starting to have twinges and will have another treatment. I was very excited that it worked so well. The therapist really seemed to know what she was doing and explained it to me as she went along (it is odd). And, also, Medicare paid for it! I had a Morton's Neuroma years ago - is there maybe some connection with pn? I find this forum to be very helpful. Thanks everyone. Susan
@susan4567 It's great to hear that myofascial release is working for you. I am a believer in MFR and have been doing this therapy for a few years and it has benefited me a lot. It is my treatment to work through the tight layers from thoracic outlet syndrome, and it has helped break up surgical scar tissue that causes tightness.
Connect
Connect
Like
Helpful
Hug
I went to my cardio doctor and he checked my pulse at my ankles and he only got a faint pulse !
I go back in December for an ultrasound on my legs !
If this has been my problem with peripheral neuropapthy, I'm going to really be pissed off a lot of doctors that should've known how to treat this !
-
Like -
Helpful -
Hug
2 Reactions@seniordon09, Thanks for the private message. I thought I would answer it here. Sorry to hear about your latest symptoms of a faint pulse in your ankles. Mayo Clinic has some information on peripheral artery diseases (PAD) here: https://www.mayoclinic.org/diseases-conditions/peripheral-artery-disease/symptoms-causes/syc-20350557
As far as clinical trials in Canada for neuropathy, you can find existing ones here: https://health-products.canada.ca/ctdb-bdec/search-recherche.do;jsessionid=11639C952BC8936DE7AC9A001984089E -- I just did a search using the term "neuropathy" to find the list above.
There is also a WinSanTor, Inc. clinical trial that seems to show some promise for PN -- https://clinicaltrials.gov/ct2/show/NCT04005287
-
Like -
Helpful -
Hug
1 ReactionA few years after being diagnosed with pn, I went past tingles and numbness and developed toe aches at night. I started taking R Alpha Lipoic Acid nightly and that aching disappeared. Feet and hands still warm and tingly. I have a patch of about 4"x 10' on my upper leg which was numb, then itchy, then burned and finally graduated to what I would imagine a cattle prod feels like. Made me say ouch out loud. I started with Myofacial Release treatment and, wow, that pain disappeared immediately. It's now been a couple of months and I'm starting to have twinges and will have another treatment. I was very excited that it worked so well. The therapist really seemed to know what she was doing and explained it to me as she went along (it is odd). And, also, Medicare paid for it! I had a Morton's Neuroma years ago - is there maybe some connection with pn? I find this forum to be very helpful. Thanks everyone. Susan
-
Like -
Helpful -
Hug
5 ReactionsGood evening @susan4567, Welcome to Connect. As you may know already, I can share my experiences with you. However, I cannot diagnose or prescribe any treatments. I noticed your post because the words Myofascial Release treatment jumped right off the page at me. I am an advocate for MFR as well as a recipient of weekly treatments for several years. With small fiber neuropathy (SFN) and chronic myofascial pain syndrome CMPS, I am a very needy patient, It makes a huge impact on my daily living and my emotional state of mind. When the tingles become needles it is time to seek treatment.
My friend, a nurse, has had fibromyalgia for many years. At this point, her legs felt like Pinocchio's, very stiff, and she was unable to touch them.
After a treatment while on a visit here, she discovered her legs for the first time in years. She can touch them without discomfort.
I also like the fact that you can do quite a bit of MFR at home. I use the cranio cradle and the foot supports with the knobs on them to keep feeling in my feet so I can drive. Is that all you are doing to maintain a pain-free existence? Are you using some medications regularly? Have you found any other help with your symptoms?
Thanks for sharing. I am going to put you on my waiting list....as in waiting for more information. Have a peaceful sleep. Chris
-
Like -
Helpful -
Hug
3 ReactionsHi Susan
So glad to hear you found relief with MFR! It's refreshing when something actually works. Take care.
Rachel
-
Like -
Helpful -
Hug
3 ReactionsHi @upnort . Will you please let me know if you find a MFR therapist at Mayo when you go in a few weeks? I’m scheduled to see PT there in January and would ideally like someone trained in MFR. many thx and good luck. Margot
Will do!
-
Like -
Helpful -
Hug
1 Reaction@amazingteal I have a similar sensation and pain in my left ear. Neurologists at Mayo in Rochester literally spent decades trying to treat this with meds. They finally diagnosed it as left auricular neuralgia. I get an injection every 3 months that blocks the nerve delivering the sensation and pain to the ear. I say every 3 months because for me I get relief for that time period. They are actually surprised that this works for that long.
Hopefully this gives you some insight.
-
Like -
Helpful -
Hug
1 ReactionI do....
@susan4567 It's great to hear that myofascial release is working for you. I am a believer in MFR and have been doing this therapy for a few years and it has benefited me a lot. It is my treatment to work through the tight layers from thoracic outlet syndrome, and it has helped break up surgical scar tissue that causes tightness.
-
Like -
Helpful -
Hug
4 Reactions