Netflix series!
I’m sure many of us are frustrated with medical opinions, diagnoses, recommendations etc. Very interesting new series called “Diagnosis“ on Netflix. Might appeal to those of you who wonder about the causes, treatment, next step etc. I am only halfway through the first episode and it is very engaging!
Interested in more discussions like this? Go to the Neuropathy Support Group.
Get the audiobook "Diagnosis" narrated by the author Lisa Sanders...Just as good!
John, thanks for helping mentor this group. Just joined. Have had PN in my feet for about 10 years, getting progressively worse. Trying to get off/reduce very high dosage of gabapentin of 3,000 mg/day. Would like to learn more of your supplemental vitamins etc especially omega 3/6 ratios. Thanks, Terry
Hi Terry @terrydclaar, I posted my story and how I found the supplements I take along with some caveats earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. All of the supplements I take I order through the links on the closed Facebook groups website - http://solutions2pnpd.com/products/. The Facebook group link is http://www.facebook.com/groups/spnpd. For omega 3/6 oils it's both plant and fish. I take 4 tsp of Carlson LIQUID Fish Oil (800 EPA/500 DHA) - 2 tsps in the morning & evening. The plant based is 1-1/2 oz daily in the morning of Manitoba Harvest Organic Hemp Seed Oil (2000 mg Omega-3, 8000 mg Omega-6).
If you are interested in trying the supplements I would recomment joining the closed Facebook group. The have a lot of files on the different supplements and you can search the group for topics on questions you may have.
Hope this helps! John
Good morning John
Curious if you have altered the protocol ever or continue by the book? I'm getting closer to starting it independently and piecemealing my supplements. Neurologist agreed to discontinue my b12 injections (will save $) and go to oral supplement then test my levels in a month.
Thanks
Rachel
...PS: No can do liquid fish oil! I will totally gag! 😣☹😞
Haha !!!!!!
Hi Rachel @rwinney - I continue to follow the protocol of supplements which I've been on for 3 plus years. My neuropathy symptoms of numbness haven't gotten any better like they did after the first 2 months of taking the supplements but they also have not gotten any worse which is sort of what the neurologist told me would happen. I do only have numbness for a symptom though.
I have added a few supplements to help with my overall health and inflammation, joints and heart - liquid CoQ10, liquid turmeric and AREDS 2 eye vitamins.
@rwinney that's what I thought about the fish oil until I tried the one they recommend for the protocol - it's lemon flavored and not fishy which was surprising to me. I also found out they make it in an orange flavor but I like the lemon better.
https://www.amazon.com/Carlson-Omega-3s-Norwegian-Wild-Caught-Sustainably/dp/B001LF39RO/ref=dp_ob_title_hpc
Psst...it's only 2 tsps morning and evening ☺ and I can't eat fish at all - comes up faster than it goes down.
I too take CoQ10 and liquid turmeric and I was just questioning the combination of adding the others. So, good to hear. Thank you!
Fun fact...when sharing the protocol with my neurologist, his reply was that can he only recommend whats medically proven best and fda approved for treatment although, he did perscribe B12, ALA and Acetyl L Carnatine.
Ok, now I'm challenged and I'm no punk so you've inspired me to go for it! 😁
How soon on the protocol did you yes improvement in the severity and progression of the numbness? I, too, am only numb with some tingly for symptoms(no pain). Was the improvement a gradual process to a final point at two months ?