Avenues of MS research everywhere!

My own research into increasing variety of movement.

New news, apparently… not the same old news!

Quite often there’s not much to report in MS research or what there is to report is all the same shape – either ineffective or carries the potential of life threatening side effects but… there appear to be a handful of avenues opening up!

A family friend from the US sent me this link last week the way concerned friends do. It’s nice to know that folk care and are thinking about you which can give as much of a lift as anything from a blister pack or bottle.

This article was referenced in the Newsweek article and it prompted me to buy some

  • Tavegil/Clemastine, an OTC (over the counter, no prescription required) antihistamine. It was the only molecule tested (out of a 1000 in their lab) that had any effect on the growing of a myelin like substance on little glass pyramids or something like that (yes, science is strange) but perhaps it will help my body regrow some myelin?
  • I’ve been using phospholipid complex since December (mentioned here) and enjoying a poached egg yolk every day to try and support my brain by giving it building blocks for the last few months.

Interestingly, to an utter non-scientist like myself this page describes part of the reason as to whether there might be a useful effect.

I’ve been signed up to be contacted and perhaps get enrolled in the SMART trial. It will be trialling three existing treatments that were developed for other conditions and, I believe are now out of patent so there is little money to be made from them in their original setting (it could be argued).

  • Ibudilast was one of the three therapies to be tested on secondary progressive MS patients when I showed interest last summer. It has been used in Japan (mostly) for the past 20 years as an asthma therapy. It’s a very good anti-inflammatory, apparently.
  • Riluzole has been used to treat The Ice Bucket Challenge disease or more properly Motor Neurone Disease once also known as ALS or Lou Gehrigs disease, I think?
  • Amiloride which is used to treat heart disease – got no punchlines or interesting facts about that treatment or condition.
  • Fluoxetine (better known as Prozac and usually used to treat depression) is taking the place of Ibudilast.

To a layman, I see the mention of having an effect from the antihistamine on asthma and see that the Japanese asthma treatment has been taken out of the MS trial (being funded by Edinburgh University) and I wonder whether perhaps the drug’s creator might be able to change a molecule or two and get another lease of life out of the out of patent drug by repackaging it as an MS treatment?

Seeing this article about the possible role of a psychedelic drug in the treatment of asthma (well, it worked on mice in the lab) leads me to think the creators of pharmaceutical interventions employ  what seems to be a scattergun approach to the therapies they push on us the patients and it really is worth not holding one’s breath for miracles. I’m an entire human being – my body and brain can’t easily get by without the other!

“What we have demonstrated for the first time is that they are also effective in treating physiological diseases outside of the brain, a completely new and exciting role for this class of drug” says study author Dr. Charles Nichols.

a line of wild animal toys

Whilst keeping an eye on various pharmaceutical offering in the pipeline I think I’ll keep up with my personalised integrative approach. My most recent exercise addition is ‘walking like an animal’ using hands and feet not on hands and knees. I can’t manage the half an hour a day that was recommended to me but after a few goes each day for the last couple of weeks I’m an awful lot better at it than I was!

This physiotherapist in Scotland was reported in New Pathways magazine last year and has now received funding to investigate his results from Edinburgh Napier University. I don’t know how or even whether it is allied to the Edinburgh University conducting the MS SMART trial at the top of this post but I think I’ll continue looking at healing my body from a number of different angles.

Author: deezll

I have spent half my life with a chronic disease and have spent a fair amount of that time addressing some of the common symptoms that a long term condition can bring. Living well is a smart choice and we all know it makes sense.

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2 Comments

  1. Histamine back in 1999, was proposed as a therapy for MS by Elaine De Lack a nurse who herself was diagnosed with M.S,
    , Multiple Sclerosis researched and developed Histamine Patche, conducting trials on herself. She discovered that M.S patients share a common symptom of Histamine Deficiency, which can be mitigated by the use of Histamine Patches. her Symptoms reduced and she regained her health. Her story was shown on ‘It’s a Miracle with Roma Downey’. For sufferers of MS and friends/family of those who suffer, this is a real breakthrough and offers a ray of hope for sufferers, pass the word.
    It is I think, what triggered the ‘Bee Sting’ therapy approach.

    and another quote supporting Hystamine as a therapy from 1999 as well :-
    The nurse responsible for the revival of the use of the natural amino acid derivative (a now mostly symptom-free MS sufferer herself) has collected verbal reports from over 200 individuals diagnosed with “MS” who’ve used the natural amino acid derivative: 72% report at least one significant improvement in symptoms, and some many more.

    The Natural Amino Acid Derivative

    The natural amino acid derivative is histamine, a very small and simple molecule made by every human (and animal) body from the naturally occurring (and conditionally essential) amino acid histidine. Yes, that’s the same histamine that most of us are told is the “bad guy” of the allergy world, against which we’re all urged to swallow the latest patent (and prescription-only, until the patent expires) “antihistamine” medication. Apparently, individuals with MS either don’t make enough histamine in their own bodies, or just need more. Perhaps both. No one knows for certain.
    I notice these little things, being dx’d with SPMS in 2003 😉

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    • thanks very much Eriks 🙂 Tavegil, Clemastine its active ingredient was talked about at the end of the Newsweek article is available to buy online without prescription.
      I’ll let you know how it goes 🙂

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