Unrelated Blogger Comments March 2016


If you want to say something unrelated to the threads, this is the place for you

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  • I would like to see some research on medical thermography (digital infrared thermal imaging) and MS.
    The scans show red areas that indicate inflammation, pain, irritation and infection. It could be used to help MSers be coached with their pain and understand patterns of pain.

  • Today I found out something new. That anti-histamines can also be prescribed for anxiety.
    This I find interesting and was wondering that as some MSers take an anti-histamine to stop flushing with DMF then perhaps the anti-histamine is also acting as a add-on DMD?
    I had a pretty nasty relapse some time ago when I suffered from severe anxiety.

  • Any ideas when the Raltegravir trial results will be published?.The very long time to publication seems to suggest a negative outcome…

    • Publishing takes an awfully long time… I sent two manuscripts more than a month ago and there are still under review without any feedback. And this is normal, my first article took a year between submission and publication! There might be a solution to that. A journal like F1000 research publishes before review (kind of a revolution). I hate to make free publicity for a journal even if it supports a great idea, but if you want your work to be available you can use a platform like BioRxiv that let you self-archive your work. Note that it does not prevent publication in a peer-review journal. You would be awesome (and I am a French person who does not use such word lightly) to do this.

    • ProfG has already said what the headline result is a negative

      Many journals request information is this article being submitted elsewhere and so presubmit could be a problem. You could say why noy simply post on the blog and sod the review process..

    • Yes THAT the headline result is negative…this is on the Blog I think it was mentioned after the Charcot invesigators meeting in December 2015

  • Good to read the Jan 16 NICE guidelines for managing MS say:
    Quality statement

    Adults with multiple sclerosis (MS) are offered a face‑to‑face follow‑up appointment with a healthcare professional with expertise in MS, to take place within 6 weeks of diagnosis.

    Such a shame this was not in place a few years ago. I had my RRMS diagnosed by a non – MS neurologist junior doctor. Then over half year later got to see a non-MS consultant neurologist. I got to see an MS nurse 12 months from diagnosis. Then I asked to be seen by an MSologist about 18 months from diagnosis, I had to really push for this. During most of this time I was not given DMD's and I was relapsing.

    I think several of us have experienced not the best care around the time of our diagnosis but it's with hindsight and my lived experience I should of been much more assertive, proactive and chasing the tails of medical professionals. It's been a true lesson in life.

    My current MS neurologist is very good but it's all too late damage has been done.

  • Hi…. there is a lot of talk and theories about the neurodegenerative aspects of MS, but we know that it can be incredibly difficult in practice to distinguish between the different types of MS. Are you able to provide information on lesion formation in MS? In particular, what is known about the differences in lesion formation between relapsing and progressive types of MS? Can neurodegeneration cause new lesions? How? Can MS lesions be created without inflammation? How? Thanks!!!!

    • Thank you – interesting hypothesis. The article also hints that neurofilaments may result from intra-neuronal protein synthesis, not necessarily from neronal damage

    • Rituximab targets the CD20 molecule that is expressed on B-cells but not early pro-B cells or plasma B cells(those differentiated cells that produce a specific antibody). Intrathecal administration of rituximab did not have an effect on reducing the number of B-cells in the CNS nor did it reduce the neurofilament level in the CSF (a measure of damage to axons). The B-cells present in the CNS are not reduced by anti-CD20(rituximab) and the measure of neurodegeneration as measured by neurofilament level is unaltered. B-cells may be present in the csf of progressive patients as antibody producing cell and not as pro inflammatory or antigen presenting cells as found in RRMS.

  • Looking over the post listings for the year, 2016 is turning out to be a slow year for MS "break throughs". It seems researchers are stuck in the doldrums: jugular vein variability…yawn, possible biomarkers for MS progression…..how long is this going to take before it is put into the clinic?, more auto antigen candidates for MS pathogenesis…..really?, hormone levels and MS activity……where have we heard this before?, and the never ending studies of Na+/K+ channel blockers that seemingly go on forever…..I guess it is good for publishing papers and padding one's CV. Meanwhile, trials for progression fail or are discontinued due to lack of efficacy. The MS research field needs a jolt of caffeine. Oh yes, there was a post on the benefits of coffee…I apologize:-).

    • Name a year where you have been happy with the MS breakthroughs……yep 2016 the same as the last….This year it will be ocreliziumab but you know this already so it is yawn…Sory

      Should we do it the Eastern way and make it up?…Yes I take it all back

    • Name year where you have been happy with MS breakthroughs? Still waiting for the source of this disease and an effective drug(s) that will address the progressive phase. That would be a true breakthrough.

  • I'm curious about terminology. There have been various posts and related discussion on this blog about "benign" MS – which seems to be largely defined as MS where over an extended period of time there is virtually no relapse activity or disability progression but MRI etc confirm that the patient does have MS.

    There seems to be very little ambiguity about "highly active MS", with a lot of disease activity apparent in both external clinical signs, relapse frequency/severity, and MRI/CSF tests etc providing clear evidence that the disease is on a bit of a rampage.

    I recognise that terminology can be somewhat subjective, but can you provide a "definition" of "mild" MS? Especially with patients who have never had any identifiable relapses or who have basically stable MRI scans over time but are still gradually accumulating loss of function? Is "mild" MS linked to an EDSS score (which many of us PwMS view as a rather meaningless and unreflective tool) or is it related more to lesion numbers and locations on MRI? I know that lesions numbers etc do not always correlate with the level of disability a PwMS may have, but my curiosity has been triggered because I was told that my MS is "mild", but the impacts of it on my life and the restrictions on what I can now do have certainly not been "mild".

    Your comments/thoughts would be appreciated.

  • Hi there,

    is it possible for you to make a series or a longer one time article about all the crap that is out there claiming to be the cause of MS?

    – CCSVI
    – Lyme Disease/Neuroborreliosis
    – Mercury/Amalgam
    – etc.


  • I have PTSD as I had a very severe and traumatic introduction to MS is there any organisation that can help me that understands about MS?

    I have contacted the MS society they couldn't suggest much. My GP and neuro know of my experience.

  • Would a few days of 100,000iu (or so) of Vit D have any impact on MS?

    The Vit D Council posted about the Knott Technique used to treat skin and blood infections. "Each irradiation delivered between about 50,000 to 100,000 IU of vitamin D to the systemic circulation".

    Also posted in 2007 which was interesting:

    "Has anyone ever studied giving 100,000, 200,000, or 300,000 units a day for several days to see if vitamin D induces antimicrobial peptides to help fight other life-threatening infections? (By the way, doses up to 600,000 units as a single dose are routinely used in Europe as “Stoss” therapy to prevent vitamin D deficiency and have repeatedly been shown to be safe for short term administration.) No, you say, studies of “Stoss” therapy in serious infections have never been studied or reported in reputable journals. Well, maybe such treatment has been studied—and reported in the best journals—by way of the weirdest medical invention ever patented in the USA."

  • Do patients with MS sometimes also have fibromyalgia? Is there a link between both conditions? I know some of the symptoms of both conditions can be similar but with MS there is usually indicators on MRI but with fibro not.

    I have RRMS but my body seems to be deteriorating and I ache back and also both legs down to feet.

    • Fibromyalgia is a hodge podge of symptoms, generally in MS this is related to extreme levels of fatigue or neuropathic symptoms. Don't forget that aches and pains can arise from stiffness/spasticity alone.

    • The problem is that MSers feel their medical team has the answers regarding their disease. The truth is, no one knows how or if one will respond to the DMTs. Also, once the disease progresses patients are out of luck…sorry to say. If you have access to a MS Center that is probably the best care you will receive.

    • I mean care other than DMT. I seem to have more knowledge of some aspects of MS than my MS nurse which is a real concern. There is no MS Centre in my area. I have had to educate the GP's at my local surgery about MS.

    • Re: "I have had to educate the GP's at my local surgery about MS."

      This should not be surprising to you; MS is not high-up on the educational priorities of GPs. I hope you are relishing the challenge? May be you help us generate some simple resource for you? We could call it 'What your GP needs to know about MS'?

    • My GP has told me that I already know a whole lot more about MS than they do. However, this is all fine and dandy once you are diagnosed and can do your own research – the real problem is that GPs need to know a lot more about MS where the patient does not have relapses as otherwise you can't get to see a specialist and get a diagnosis until after irreversible damage has already been done. It's all very well having the capacity to become an informed patient (thank you Mr Google and Barts), but you can't become informed until you know what you need to be informed about. Horse & cart? Chicken and egg? Hit hard and hit early only works if you know what needs to be hit.

    • MS can be really nasty, well it has been to me. Yes happy to be involved. Good idea. It is surprising what some GP's don't know about medicine.

    • Can we really expect GPs to have an in depth knowledge of all their patients illnesses? I expect my consultant's clinic letters to inform and advise.

    • Anon at 12.47pm I agree it is all well and good once you know what is wrong with you, that's why we see a doctor to find out what's wrong.
      When I first became unwell with MS I didn't know I had MS. I did not know what MS was then. I wish I knew then what I know now. Gutted.

    • No wonder so many people go to A&E rather than see a GP. How do we know the GP has knowledge and experience of what is wrong with us? Is it too specialist for the GP?

    • Knowledge and experience are polar opposites – yes, I expect our GPs to have the knowledge about MS, but equally I expect the neurologists to keep them informed about their specific patients – therein lies the experience.

    • The first problem is that many GP's do not recognise some symptoms as being MS (before patient is diagnosed). I have asked several GP's this directly. So their knowledge is lacking and this is actually quite dangerous. Especially if the patient is suffering from stress. A delay in being seen by the hospital when the MS patient is stressed is not a good situation.
      I know this because this is what happened to me.

    • Anon at 12.47pm back again
      Anon at 4.58pm – first you have to actually manage to get to see a consultant or specialist and get/have a diagnosis before consultant's clinic letters can inform your GP.
      Anon at 5.43pm – it doesn't work so well when you tell the doctors what is happening and don't get referred on to a specialist to find out what is actually wrong. I told doctors (Yes – plural) of my symptoms and loss of function, and one even went through several stand on one leg with your eyes shut and now try jumping/hopping tests, then muttered something about "Oh looks a bit like myasthenia gravis" but didn't refer me on.
      Anon – at 5.43pm – part of the point I am making is that we don't know that we have MS – that's why we go and see the GP, although some of us may have our suspicions and I actually mentioned MS to my GP on more than one occasion.
      Anon at 5.49pm – no point in going to A&E if you are not having a relapse with severe accompanying symptoms. Triaging systems mean that if you are not actually in the middle of a myocard infarc or have chopped your hand off you basically won't get seen at all. A&E triaging priorities are with severe and acute problems, and the pressures on most A&E Departments means that having ongoing trouble walking, fall over in the dark because your balance is shot, and have a leaking bladder are not seen as a high priority (realistically this is rightly so) so it really leaves your GP as the only option. In my country you can't self-refer to specialists, and GPs are the gatekeepers of the referrals system, so if the GP is not taking on board what you are telling them you are stuffed.
      NDG – you are correct in what you say, and GPs are GENERAL practitioners. As such they don't need nor should they be expected to be MS experts, but there does need to be a basic knowledge sufficient to know when a referral to a specialist is required. Prof G has posted quite a few articles on this blog with summaries of symptoms, windows of opportunity etc. After I was finally diagnosed, it only took a very short amount of time after I found this blog to see that everything I was telling my Drs was a perfect fit for MS. Thus I have to entirely agree with Anon of 9.07pm that there is a big lack of knowledge among GPs in relation to considering MS when a fairly "standard" collection of MS related neurological symptoms are present. This is even more important in light of the increase in diagnosis of MS in older people. What was even worse that the two neuros I eventually saw both said it would not be MS because there was no history of relapses (and they were supposed to be the specialists!). My first MRI (ordered by neuro No 2) was apparently so conclusive when combined with my symptom history that I didn't even have to suffer a lumbar puncture.

      So – I too was gutted in many ways – EDSS 3+ at time of diagnosis (which was around 4 years after first discussing with my GP) and no prospects of improvement. Still going downhill function-wise as well.

    • Hi Anon 5:02 I'm Anon 4:58. I stand by my comment that GPs cannot be expected to have an in depth knowledge of all illnesses. I'm saddened to hear your GP dismissed your symptoms. My experience of a locum GP that I'd never seen before, referring me to a neurologist at my first visit. I was on the waiting list and deteriorated before I got to seen. I was then sent to another hospital and diagnosed with MS. I was told not to worry unduly as my function could return. I've had relapses and had recovery 2 years later. Some doctors are better than others and in general my experience has been positive, but I've had my fair share of mistakes.

    • Unfortunately I lost a cousin in his 20's to GP's making mistakes. My cousin had stomach issues. Two GP's kept saying it was bad diet as he was at university at the time. My cousin moved county some time later and saw a new GP. The new GP recognised it wasn't bad diet and he was referred to the hospital. It was stomach cancer and he died several months after.
      If only he got a third opinion.

    • Anon of 12.47 and 5.02 back again
      Anon of 4.58 and 9.35am – I agreed with your comment that "GPs cannot be expected to have an in depth knowledge of all illnesses" but I still stand by my comment that "there does need to be a basic knowledge sufficient to know when a referral to a specialist is required" – as shown by 11.21 Anon's sad tale about his cousin. Both and I the cousin would be far from the only patients who have had bad outcomes – at least mine was nowhere near as bad as Anon's cousin. I do not expect doctors to be infallible, but the vast majority of patients who just "know" that "something" is not right are usually correct. We are not all hypochondriacs or suffering from Factitious Disorder (previously called Munchausen's Syndrome). The simple fact that one of the doctors I saw muttered about Myasthenia Gravis is a clear indication that things were not "right" with my functioning.

    • Would it help if GP's had to use an advanced symptom checker on the computer for every appointment? Could it help reduce mistakes?
      I know there is a symptom checker they can use but if was frequently updated by NICE etc I think it really could help. I don't think it would add much time to the appointment.

      I know some of the GP's I've seen spend time looking at their computer when I have an appointment with them. Adding medical notes online.

  • I have MS and my mother got a book out from the library on MS. Reading through it I have to say the authors are MS specialists and I do question some of what they have written. I would like to give some feedback to them. A review of the book by an MSer. It would be a case of me writing to the authors (neurologists) at their hospitals. I don't mean it in a rude way I just think they need to be told.

  • Hi all,
    What about milk? The weather is not the only environmental factor, diet too is environmental. Vit D in Australia and Brazil might not be a huge issue. And women more than men are advised to drink milk. Also I noticed that during winter holidays (prone to cheese), I felt worse than usual. Is there any epidemiological studies on this?

    • XoR Xor – I'm curious as to what you are asking about milk – can you explain further?.
      Also wondering what you mean by "Vit D in Australia and Brazil might not be a huge issue". I can't comment on Brazil, but not all of Australia is a sunburnt country, and in the southern-most parts there is a high rate per capita of MS.

      For Anon at 8.46am – re not enough Vit D in food – that's why they invented Vit D capsules and tablets! Not everyone can get enough Vit D through sun – especially in areas of very high UV and consequent skin cancer risks.

    • Anon 12:15 I'm on vit D tablets and saw a dietitician, but that's only what the medical profession told me. I was told to sit in the sun early morning and late afternoon 10 – 20 minutes from May – October.

    • The reading of "Darm mit Charm" explains my comment on milke, this book is a best seller about guts (nicely written and informative). Where the author is talking about lactose intolerance, how it almost automatically get worst with age (like the evolution of MS?), how lactose can trigger a bad behaviour of the immune system (MS?), the link between calcium and vit D (MS?), and my arrival in the UK where I milkified my breakfast (before the onset of my MS). Also how women are more prone to drink milk (against osteoporosis)and MS than men.

      About VitD, I guess my comment is due to my westerner view of Australia as a sunburnt country 😉

      I was seduced by this viral idea of MS but this theory does not exclude an environmental factor like sun or food. The problem with the Herpes virus theory is that almost everybody has it, but not almost everybody has MS. I assume that if you couple Vit D insufficiency, Herpes virus (and lactose intolerance/intake), the population dramatically fall and maybe it is where MSers are.

  • When we have a blood test for vit D, does the result of the test show our level of vit D2 and vit D3 combined? thanks.

  • How do MS brainstem lesions at the level of the pons impact on REM sleep?
    Rapid eye movements (eyes moving around under eyelids) from what I read are generated in the brainstem at the level of the pons.

    • Reading into it damage to the pons and/or caudal
      midbrain can cause abnormalities in REM sleep. I would find this a fascinating area for MS research.
      Interestingly most antidepressants selectively inhibit REM sleep due to their action on monoamines, though this effect decreases after longterm use.

    • There are a whole category of sleep disorders described because of brainstem involvment; REM disorders, narcolepsy, sleep apnoea…

    • Good to see a paper on neurorestoration. Too often the research focuses at the base of the MS pyramid or inflammation.

    • That's just great, another dogma in neuroscience is overthrown. Let's just challenge the first one, that no repair occurs in the adult CNS – this is not so, and now this. An interesting paper, but this is data in mice, what happens in humans? There are so many other factors to consider in the latter.

    • …..but this is data in mice, what happens in humans?" Um…. EAE data is gathered from a murine model, what happens in humans? BTW dogma being overthrown is what makes it all interesting in science and in life.

    • It appears to be a positive result this is major..the first small molecule selected to target remyelination

  • hi are you keeping up on the biotin I see were they have 348 million to do trai 3. why so much money? and do you know about oldenandia t20k

    • Trials are very expensive and you need to pay for the company for the years whilst the trial is being unertaken

    • What is the difference? Maybe about $20,000 🙂

      Alemtuzumab depletes CD52 ( T cells and B cells) and is very effective but causes secondary autoimmunity it is taken as two doses a year apart and about 40% of people don't need another course.

      Ocelizumab is anti-CD20 and depletes B cells is appears as effective as alemtuzumab but not tested in a head-to-head trial but it does not induce secondary autoimmunities. It is given once every 6 months.

      Is it an induction therapy…we need to see the data.

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