Low Dose Naltrexone LDN was mentioned to look into. I am still pursuing this, and have looked at some interesting data. would love to know about others using this with ms.
Let me hear of people's experience with this ldn, and the home compounding sounds much more affordable, as then you could zoom into the proper doseage, instead of using a compounding pharmacy, for those inclined to make items.
I was in a Trial using real Biotin in large diseases (vitamin b7) I found myself measuring precise amounts of a pure white pure Biotin powder daily, with a precision scale. I had to stop trial early due to thick blood from H63D genes they found by endocrinologist, as biotin was used in one of the test on thyroid glands. I was referred to the cancer center.
The Cancer Dr found the HFE gene, two H63d genes mutated, causing Iron overload. I have for 17 phlebotomy done.
https://rarepatientvoice.com/everchangingms/ is a good starting point for Rare diseases, or any. They do paid studies for research.
I make my own Quinine, to obtain 22 mg per serving, to help muscle spasms. So this process of compounding Naltrexone 50 mg into 50 mgl of water sounds quite simple.
I am currently on about twenty five medicines. A Sharp pain in My back and zapping thru My fingers brought me to these new Drs, from My GP. I was inbetween Botox injections into My neck muscles and calf muscles in both legs. They had not happened for six months.
The Head Professor, at UC Davis who injects the Botox was still a month away. My last Neurologist took a medical leave of absence, so It had been six months to get into the expert, and this Dr was the expert.
The New Dr, had a student with him. A guided computer to help show how deep and into the muscles, the botox needle needed to go. The needle which was about three inches long was effortlessly injected, as the muscle names flew softly from the professor, as I heard the machines crackling sounds diminish as injections were happening, some deep, some shallow. Some requiring more botox, as the needles he had were pre loaded with Botox. My calves and both sides of my neck were done.
I do miss My old Neurologist, and his small staff. He had a lot of knowledge, and our discussions were always worthwhile, with my notebook full of questions. His scrybles, deciphered only by a few, shows My eight years of history with him. Some notes transcribed. I do hope to see him lecturing somewhere on the circuit to ask him questions. He was a old timer, without the need for a computer, with a office full of papers, and a staff of two. One gal made appointment the old way in a book with pencil she had folder of Drs notes, and prescriptions written out.
My online pharmacy, did not like their fax. Refused, and would leave messages for Dr at 2am. I finally found a way around this, as this was creating too much work to keep refaxing, and time talking to them. On my part was a good hour every refill, for days on end. Drs office, was even more frustrated. The Fax Machine, huge size for medical office, did not talk to the upgraded Hal 2001 , which was now standard for insurance companies. This generated computer errors, and call backs, but no human could fix, or know that was the problem, or relay such.
My fix, was to mail in the Drs prescriptions. That old fashion step got me My meds prescribed.
Now into new Drs... The Botox helps tremedously. I look forward to it, kind of a oxymoron, but that's how some of the pain gets relief from.
My other Dr is into mindful meditation.
I hope to keep adding to this page with your help of links, youtube, and others to try.
He has a MBCT class in August, but it's now going to be virtual, due to covid-19. Matthew is trying to get me in, but for now, here are some links I have found.
LDN
https://ldnresearchtrust.org/what-is-low-dose-naltrexone-ldn
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
How to be your own compounding pharmacy directions
https://altarp.com/how-to-prepare-low-dose-naltrexone-ldn/
Search Facebook for LDN
Other groups
Facebook private group on interested Clementine Fumarate
Clemastine Fumarate / Metformin / Off Label Drugs For Multiple Sclerosis
https://www.facebook.com/groups/699183567291955/
MINDFULL MEDITATION
I was first introduced to this from Lindsay Wagner, https://lindsaywagner.com/
who played the Bionic Woman. My Partner, Wil, is a big fan of hers, and Wil has a few of her look alike dolls in his collection from the Bionic Woman.
We went down to Monterey, CA. For a seminar on mindful meditation. It was held in Monterey. Wil found a unbelievable deal and instantly booked a great deal for a weekend at the
ASILOMAR CONFERENCE GROUNDS. https://www.visitasilomar.com/ We had a building to ourselves, and the ocean right there. Work didn't matter, as we put in for the days off regardless. We made our own food, so not to disturb conference they had.
This is when I was being mid diagnosed with Crips. Chronic Regional Pain Syndrome
Lindsay was in Monterey, just minutes away from Asilomar. A quite quaint Expensive Town, that you will feel out of place in without name brand expensive apparel on.
We sat front row, perhaps the only two guys, but standing room only before she came out in a flowing soft cotton outfit.
The year was 2011
We bought her CD ,
Lindsay Wagner on "Quiet the Mind and Open the Heart."
lindsaywagner.com
https://m.youtube.com/watch?v=1yX8ePlf-Pk
https://www.pinterest.com/pin/533676624567062205/https://www.pinterest.com/pin/533676624567062205/
https://www.elevatedexistence.com/the-bionic-woman-lindsay-wagner-talks-meditation-holistic-healing-and-shifting-perspective/
Other mindfulness sites of interest
https://healthstoriesproject.com/5-self-care-tips-for-chronic-illness/
https://palousemindfulness.com/MBSR/week0.html
The MS Trust has a few to start with.
https://www.mstrust.org.uk/a-z/mindfulness
I have been invited to join a study group put on by the University of Washington on MBCT, or CBT training, or by the flip of a coin, just a care group for eight weeks.
This is funded thru the National Multiple Sclerosis Society.
https://www.nationalmssociety.org/About-the-Society/News/MS-Trial-Alert-Investigators-Recruiting-People-wit
https://multiplesclerosisnewstoday.com/2019/01/31/ms-patients-sought-test-alternative-chronic-pain-treatment-methods/
I asked them specific questions my new Drs had, of continued appointments with them, and joining their group in August, overlapping the study. The Dr I spoke to in Washington, did not see it as a problem doing the MBCT training at UC Davis also. The parameters.
This will all be by zoom platform, University of Washington platform, phone and email, with 6-7 per group. A Total of 240 participants, with 80 for MBCT training, 80 CBT training and 80 in care group...no help. So hope to have coin flip for MCBT. July 29-Sept 16, with follow ups.. Meeting two hours weekly.
Thanks for reading
JoeY
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