Living with Neuropathy - Welcome to the group

Hello @trwee, @johnbishop has asked me to respond to you about the efficacy of including CBD in your medication regimen. First a question....if you are taking almost the max dose of gabapentin....would that be close to 3600 mg a day? How many times a day to you take the medication and how many mg in each dose? There may need to be some adjustment of dosage and time that it is taken. Please let your neurologist or other provider know about your experience with the medication. I take 900 mg at bedtime and it lasts through the night. CBD is a cannabinoid with documented good results for pain and discomfort. You can purchase unregulated CBD with a maximum of .05% THC online. That format is from the hemp plant. My experience is that CBD alone just doesn't work for me and I also prefer CBD culled from the marijuana plant. I do find tremendous pain relief from a 2-1 tincture. That means 2 parts CBD to 1 part THC. That level of THC makes all the difference. I use one dropper in my coffee at breakfast and another with tea at dinnertime. It is very important that you do not use any marijuana product on an empty stomach and that you do not combine it with any form of alcohol either before or after using it. It is also important that you purchase the product from a reputable dispensary. The medical marijuana industry is going to great lengths to extract the purest and best product. It gets better and better. I work with a knowledgeable coach employed by the dispensary. You do need someone to help you select appropriately and who can help you evaluate the results before moving forward. My best to you. Do stay in touch on Connect.

A normal EMG is very typical with small fiber neuropathy. As John mentioned, a skin punch biopsy or as I had last year at Mayo, a thermoregulatory sweat test (TST) .

Hi John, Thanks so much for your response. I take the following meds/supplements: Prednisolone 30mg, Aspirin 75 mg,
which I am looking forward to. it has taken months to get this appointment as I live in the D3 1500 mg, GI Probiotic Supplement, Omega 3 w/Vit D, Magnesium Citrate 200mg, Organic Raw Bone B Complex 360 mg, Propranolol 20 mg. None of which I saw on the list (which was very helpful by the way! )

I am not on statins, but should be. My cholesterol is very high and I have the same conversation each month with my GP about staring on Simvastatin; I refuse to start taking it now with al the other issues.

As mentioned my bloods are taken every 8-10 weeks and my sugar levels have always been within normal range.

I have an appointment with a Neurologist on the 21st of this month, which I am looking forward to. It has taken a couple months to get this appointment as I live in the UK and had to beg for a referral under the NHS. ( I am an American Expat living her with my husband. )

Thank you so much for the response... It is good to know I am not alone!
Melissa

Hello, Thank you that was a good tip... I will be asking the Neurologist about both, when I see him/her on the 21st of this month. Many thanks, Melissa

Hello all -- I finally put all my notes together for the Saturday, August 4th meeting of the Minnesota Neuropathy Association. I'm attaching a PDF version with links to websites with more information on what was presented. The meeting was very informative and I learned a lot -- it's too bad I have a retention problem. Hey...that's why I take notes!

Speaker: William Hoffman of the U of M Medical School
Topic: Stem Cells and Regenerative Medicine: A Revolution Picks Up the Pace

John

Hello @johnbishop . Thank you for this amaizing information , and for educating us on What to expect in the feature. Do you have any idea when those new stem cell treatments will be available ? Many countries seem to be ahead of us, and a lot of people are going to spand their money outside the USA. That’s going to be a loss for us ? Can patients with trauma neurophaty or idiopathic be more fitt to try the stem cells , since it’s not autoimmune or diabetes ???

Thank you for the updates! !!

Best to you !!

Hi @marinelastef -- You are welcome for the updates. Unfortunately I'm just a passenger on the stem cell treatment research journey. It's really interesting and promising stuff but for neuropathy I do not think it's close...just my opinion based on what I've read and researched. I think when we see clinical trials followed by clinical studies on stem cell treatment for repairing or regenerating nerve cells that will be the first signs of real hope. I believe I heard the speaker at the meeting say that all of the big pharma money for research is going into stem cell treatment clinical trials for cancer because it has the greatest promise.

Who knows though...that's why I keep reading, searching and learning whatever I can. Also helps me meet my daily goal - learn one new thing every day. What's great about that is I am an old guy and sometimes the new thing I learn is something that is not really new. I just forgot I had read it before ☺.

Have a great weekend!

John

Hi John, please go to You Tube and take a look at Dr. Michael Johnson’s video briefings on stem cell treatments for neuropathy and the many studies he identifies for this treatment. Dr. Johnson runs a treatment facility in Appleton, WI. Some amazing stuff.

@johnbishop , if I’m not mistaken, Mayo already has clinical trials on repairing nerve damage. I found out that the trail is formed by 10 patients with nerve problems. That should tell us that they have the formula but not everyone is privileged to try it. However, I think that people with neuropathic trauma have no guilt in their illness, therefore they deserve what was taken away from them to be granted .

Thank you John for being our advocate !!

Hi Robert @robertclark,

He does make it sound good and it would be amazing but I'm pretty skeptical. No FDA approval, no studies, lots of money. Then there is the Better Business Bureau rating of his business which adds more doubt for me. To coin a phrase from one of the sites, "it's like the wild west out there with stem cell clinics".

Optimal Health Stem Cell and Wellness
-- https://www.bbb.org/wisconsin/business-reviews/chiropractors-dc/optimal-health-stem-cell-and-wellness-in-appleton-wi-1000025371/alerts-and-actions

Selling stem cell claims via sponsored TV news – “horribly wrong” health news
-- https://www.healthnewsreview.org/2016/07/selling-stem-cell-claims-via-sponsored-tv-news-horribly-wrong-health-news/

Be Aware of Seven Questionable Clinics
-- https://www.medscape.com/viewarticle/874296_4

It would be great if someone who tried it could share with us. It would be great if it was successful in nerve regeneration.

John