Q & A. Happy Yorkshire Day


Nothing to do with MS

Greetings from Gods Own Country on 1st August (Yorkshire Day)

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  • Kinda embarrassed to bring this up with the neuro and I actually have never mentioned it.

    I wet my bed almost once every year, before the onset of my MS.

    I also have urine urgency issues long before my MS, I pee’d myself probably a couple times a year if not more, while walking back home, and couldn’t hold just at the door step.

    After my first MS attack and diagnosis, I find my bladder issues got a little worse, or I could just be overthinking about it. I think I wet my bed about every 8 month now (3 times in 2 years). and very occasionally urine incontinence during the day (not a lot, only happened couple times).

    Thanks for the blog I can describe this issue anonymously…

    Do you think MS had made my bladder issues worse? Or could my previous bladder issues caused by MS long before my first clinical MS attack and diagnosis? I have been fairly stable since onset and been put on Ocrelizumab, should I discuss my urine issues with my neuro? I have more spinal lesion load than brain.

    • Thanks for sharing your experience, which will sound familiar to many pwMS. Difficult to say whether your prior urgency/incontinence were due to MS since numerous other conditions can cause bladder problems. Having said that, spinal cord lesions are very common in MS, and bladder control is complex and can be impacted by lesions in the brain all the way down to the lower spinal cord and – if thinking of different diagnoses – beyond that. Though not familiar with your specific condition, it is more likely than not your urgency is being adversely impacted by your MS. Do discuss respective issues with your neurologist and/or nurse specialist, who may either assess and start treatment themselves, or refer you to a continence service.

        • Ask your HCP also about PTNS (percutaneous tibial nerve stimulation).
          Works great (my n=1 personal option) for neurogenic/ over active bladder. Takes 7- 10 weekly session with a ptns professional for buildup, tryout and education. If it works you can buy your own ptns device to continue at home. No side effects (!) and can be combined with medication if ptns alone is not enough. Ptns is todays first choice start therapy from Dutch MS specialized urologists.

    • I assumed my worsening ms was responsible for the deterioration in my bladder function over the last 2 years, but following surgery to remove my tumour filled uterus I can see that it wasn’t all caused by ms. I still have continence issues but there have been improvements post surgery. It can be difficult to know when to blame ms and when to look elsewhere.

      • Treating overactive bladder is like walking a tightrope. Anticholinergic medicines and mirabegron help. Too much and you stop urinating completely and need a special tube, called a catheter to bypass the muscles. Catheters introduce bacteria and risk cystitis. Infections of any kind make MS worse. The drawbacks of anticholinergics have already been discussed here. Definitely one for the specialists (Urology or Neurology, depending on local expertise).

        • Im a male.

          For my bladder issues im treated with tamsulosine and before that with alfusosine. Both prostate meds.

          With alfusosine i needed viagra too. With tamsulosine i dont.

    • Pelvic floor exercises and bladder training for men and women have been good for many people.

      One in three women of the general population have bladder leakage of various degrees. So it’s very common. Due to child birth, heavy lifting and many other reasons…

      In my experience Continence teams suggest pads, catheters and do a bladder scan to check for urine retention. The scans don’t check for bladder or kidney stones.

  • I recently underwent hsct at barts, the first four months i done great and likely dropped by atleast 1-1.5 edss points. At the 4 month mark i have gone down hill rapidly with no new mri activity and am clear of infections. I stopped steroids at month 2 post transplant by which point was only 5mg a day. Alot of people that have previously been treated talk on social media about a “rollercoaster” in the first year meaning symptoms worsen and improve drastically day by day or week by week. Have you ever come across this phenomenom ? And what would be the rationale behind it ?

  • Question What is the effectiveness of disease-modifying treatments (DMTs) in patients with primary progressive multiple sclerosis (PPMS) with or without active disease?

    Findings In this comparative effectiveness research study of 409 matched patients with PPMS, DMTs were associated with reduced risk of becoming wheelchair dependent in patients with persistent inflammatory activity.

    Meaning Inflammatory activity may be a modifiable component of long-term disability outcomes in patients with PPMS

  • Hi,
    What is the current best practice / recommendation with regards to washout times if one were switching from Fingolimod to either –

    (a). Another S1P (e.g. Ponesimod or Ozanimod. Can one go directly onto another S1P without any washout period?)


    (b). A B cell depleting DMT

    • Maybe profK can answer we know activity can occur after a few weeks to a few months, but one question is if the lymphocytes have come back

      Logically fingolimod inhiits S1P1,3,4,5 and the other two hit S1P1 and S1P5 so if you go from one to the other you are getting extra fingolimod effects on S1P1

  • Should pwms about to begin anti-cd20 therapy add polio booster to list of vaccines to update? The CDC has specific advice but unclear if this applies to such situation. ” Higher-risk adults who have had one or two doses of polio vaccine in the past should get the remaining one or two doses. It doesn’t matter how long it has been since the earlier dose(s). Higher-risk adults who have had three or more doses of polio vaccine in the past may get a lifetime booster dose of IPV.” If Polio is present in one’s community and wastewater, can a pwms already on anti-cd20 therapy benefit from polio booster ???

      • I really hate it when a review isn’t comprehensive! Even if it is generally supportive of a particular hypothesis.
        But I guess being in a Nature Review journal is a good thing in terms of widely socialising the idea of Epstein-Barr as the causative agent of MS.

          • I buy molecular mimicry and this has somehow sparked the imagination of people. However I say let’s see it repeated as we have been here before.

            Glialcam is a more of an astrocyte marker and it is found in the liver hence its name hepacam, so why arent your livers being destroyed too?

            Indeed, where I am cautious is the exact same types of approaches two years ago came up with a different target and then a decade ago another antigen was found and then abit longer and another target was found. Anyway we will find out a company has been spun out to tolerize to glialcam…the greek god of relaxation…I heard they are reporting positive effects in EAE it drops disease development by 50% whoopie…Put that head to head against fingolimod.

  • With the dry warm weather, olives are now growing in Essex. There are olive growing projects.

    We mentioned olives a month or two ago. And if these could help pwMS.

  • What does an MS lesion look like? I’m not talking about MRI or microscopes, I’m talking about seeing a lesion sample with your naked eye, would it be visible? I have 3 ones so far around 10mm, would I be able to see them?

    • Yes and know….the MS plaques are visible by eye and feel different too, but the very early lesion is going to need a microscope….bu at 1cm you could easily see it

  • Microglia

    Mouse is not human

    The most striking difference that we witnessed when using human tissues is that the pattern we had seen in rodent samples was not the same. We discovered that microglia develop in a very different way in humans, and undergo growth patterns which go up and down, creating waves throughout our brain development.”

    New study shows microglia cells colonize the human brain in waves


    The grafh look must like the stock market ,covid 19 waves

    • Thanks interesting but is it surprising there are different elements a mouse is independent of parents after 3 weeks and adult a 6 and dead by 2-3 years.

        • I remember reporting on Toms work a few weeks ago, but the trial is due to end at 2024 so plenty of time to talk about it.

          Williams T, Alexander S, Blackstone J, De Angelis F, John N, Doshi A, Beveridge J, Braisher M, Gray E, Chataway J; MS-SMART and MS-STAT2 Investigators. Optimising recruitment in clinical trials for progressive multiple sclerosis: observational analysis from the MS-SMART and MS-STAT2 randomised controlled trials. Trials. 2022 Aug 9;23(1):644.

  • Have a heart

    Poor heart health predicts premature brain ageing

    The participants were all between 69 and 72 years old, but their estimated brain ages ranged from 46 to 93.

    The participants were all between 69 and 72 years old, but their estimated brain ages ranged from 46 to 93.

    The researchers also found that higher brain age was associated with higher concentration of neurofilament light protein (NfL) in the blood. NfL elevation is thought to arise due to nerve cell damage and is increasingly being recognized as a useful marker of neurodegeneration.


By MouseDoctor



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