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  • Just finished my hsct at barts. What add on therapies, trials or treatments should i be looking to apply or too. Im 22 months diagnosed with res ms.

    • Brave and most probably a very smart decision! My wife did it and it seems she is doing quite well! What i see, strenght and other excercises help a lot, keep a good mood and slowly things will improve! Be patient ! She will also try transcutaneous spinal cord stimulation to reduce knee pain and spacicity probably caused by spine lesions…maybe somebody has some experience with this? I guess that would be most of add ons that we are looking at. Good luck!

  • Rehabilitation Before and After Autologous Haematopoietic Stem Cell Transplantation (AHSCT) for Patients With Multiple Sclerosis (MS): Consensus Guidelines and Recommendations for Best Clinical Practice on Behalf of the Autoimmune Diseases Working Party, Nurses Group, and Patient Advocacy Committee of the European Society for Blood and Marrow Transplantation (EBMT)



    Autoimmune Diseases Working Party (ADWP)

    Lots and lots of info

  • They also performed better on tests measuring MS disability. Specifically, study patients walked an average of 1,631 feet on a six-minute walking test at the start of the study, compared to 1,733 feet after six months on a keto diet.

    Levels of inflammatory markers in their blood also improved through the study period, Brenton said.

    Study suggests Keto diet helps people with multiple sclerosis


    • Intresting but the way the article is written I would say why other you dont have to do all that manipulation of siponimod you just use ponseimod as it largely binds to S1P1

  • What private doctor/physio in London or the UK would you recommend regarding balance exercises and physiotherapy with private treatment? There are many physiotherapists but I feel like some of the ones I’ve visited are just improvising and doing basic training that I can just find on youtube. Do balance exercises actually have a significant impact on MS related balance issues ?? Would anyone recommend anything in particular?

    • Appreciate publicly available information has caught up big time with what happens during a F2F session, and sometimes people wonder why they pay any money for it (if arranged privately). The same argument applies to a personal trainer, however, and yet those who can afford it use one for the individualized approach, adapting the training to your specific needs. Exercise is not everything. If your MS isn’t well controlled, either by DMT or if you’re lucky to have truly “benign” MS, your condition is likely to deteriorate still. Exercise works in concert, but if you don’t use them, maintain your coordinated synaptic firing and tract systems, you are liable to losing them more rapidly. This applies to balancing exercises too and – with all its shortcomings – supportive evidence is IMO mounting (e.g. https://pubmed.ncbi.nlm.nih.gov/35174869/). No specific recommendations for private physios or colleagues here, I’m afraid.

  • Two of my female relatives over 50 were recently diagnosed with breast cancer after having moderate to severe covid. 1 is a reoccurrance, the other has aggressive non genetic form. Both were told by their respective oncologists that a connection to covid is suspected. ?!? I found a 2 yr old medical article speculating that neutrophil extracellular traps (NETs) and a pro-inflammatory microenvironment may promote breast cancer reactivation. What could NETs and pro-inflamatory enviormnent do to a pwms? Ps both my realtives had their cancer caught on a yearly mamogram.

    • i had my first relapse a month after severe covid infection! never had any symptoms before this. My partner had ebv reactivation with hers so i suspect she passed active infection to me triggering my ms but who knows. one thing for sure covid is doing far more long term damage than people realise.

    • Thanks for posting Luis. I think I grasp this finding: there is Fast lipid turnover and need for lipid supply in mature myelin??? Is this consistent with Dr. Swank’s finding that MS brains at autopsy are short on omegas 3 & 6? Does this research suggest supplementation with lipids may be beneficial to some pwms?

      • It was what the Author of the study said

        What i find fascinating is that Qki its a tumor supressor gene (cancer policeman)
        And you really need Qki to continually produce myelin

        Also this study came from Md Anderson cancer centre, and i suspect that this was an surprise find

  • Does the immune response to milk proteins further point to the gut microbiome being where MS starts and the imbalance in bacteria/viruses and the negative immune response through molecular mimicry to EBV or another target.

  • Brain cell insight could lead to new treatments for neurological-based diseases

    The scientists discovered that oligodendrocyte cells in the brain are distinct from oligodendrocytes in the spinal cord in a fundamental way—their metabolic processes, the essential chemical reactions that power them, are completely different.

    “The cells look identical under a microscope, so everyone assumed they were the same,” said Teresa Wood, a Distinguished Professor and the Rena Warshow Endowed Chair in Multiple Sclerosis, who led the Rutgers team. “We drilled down to see what the cells are doing from a biochemical and molecular biological perspective. And we found they are definitely different.”

    Did not know this

    Overall, the research team made three key findings:

    Cholesterol, a building block of myelin, is produced by oligodendrocytes in the spinal cord at a greater efficiency and volume than oligodendrocytes in the brain. Understanding how and where a building block of myelin is produced could assist researchers looking for ways to thwart myelin destruction or to promote myelin repair in certain areas.
    The cell protein known as mTOR (short for: mechanistic target of rapamycin) is necessary for the production of cholesterol in oligodendrocytes. By recognizing this protein, researchers may be able to target it to enhance cholesterol and myelin production.
    The cell protein mTOR is also critical for maintaining the already-formed myelin structures in the central nervous system


  • Why do you think there’s more Aluminium in the brains of people with MS? What’s the theory behind this?

    Would this have an effect on the immune system in the brain somehow.

    • Deposits of aluminum in brain possibly from Leaky BBB or hyperparathyroidism (increases absorption of aluminum I think i recall) from chronic vit D deficiency??? Wonder if way to help clear/prevent deposits with diet or supps since exposure is harder to prevent. I actually think your question every time I purchase my favorite underarm deodorant. Stinky B.O. vs. unknown future impact on my MS. And when I need an antacid, GERD or unknown future impact on MS. Hard call. At least for me, in the US State of Texas with both incredibly hot sun and food.

      • Could be Suebee, if permeability of the BBB was the case though, then endless other molecules may enter the brain. Which may be the case, it’s a shame antibodies can’t on mass (yet)

        But like yourself i seam ultra aware of what I’m putting into and on my body. I’ve always been health conscious, however more now than before. Eliminating Aluminium as much as possible can’t be a bad thing.

        High silica mineral water is apparently good for chelation of aluminium and I believe corriander / cilantro is also another

        • Aluminium was previously suggested as a cause of Alzheimer’s disease and subsequently comprehensively debunked. It is far more likely that a leaky blood:brain barrier is allowing entry to compounds such as antibodies which can stimulate microglial cells via Fc receptors plus all the other nasties encountered in our day to day lives such as pollutants that are normally pumped out by drug pumps, activity of which is severely reduced around lesions (as we elegantly described some years ago).

          • If a leaky BBB was the case, wouldn’t things like exercise that increase blood flow to the brain be detrimental to MS rather than beneficial?

            Surly more blood flow equals more unwanted molecules in the brain tissue

  • Hi team,

    I am soon to be switching to Cladribine after 12 years on Natalizumab due to JC+ status. At present when I get my blood tests done before my next Natalizumab infusion my lymphocyte level is always higher than normal usually no lower than 4 (a recent blood test showed my levels at 4.6, “with normal values between 1 and 3”.)

    I have read a couple of people who have transitioned from Natalizumab to Cladribine and their lymphocyte depletion has not gone below ‘normal’ as they were starting from being at a higher initial level. If this is that going to be the case with me which seems it likely will, could this have an impact on clinical effect if my lymphocytes are not dropping below normal?

    Should I be having a slightly higher dose as I have a longer way to fall? I am close to the next dosage tier also – with my weight being 78kg I am close to the higher dosage. It’s something I don’t really want to do but I wonder if it would be ‘better’ to put on those 2 kg to get me the higher dosage for an 80kg person.

    Apologies if I have got this all wrong but it does seem logical to me or at least my non-medically qualified brain. Thanks very much in advance

    • Cladribine did not drop lymphocytes below normal in most people this is because it is a selective B cell depleter with abit of T cell activity. Natalizumab traps cells in the blood so they appear higher. I bet if you look your memory B cells are down

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