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MouseDoctor

213 comments

  • Dr Chattaway and co were on the news a lot yesterday about the MS Smart trial. As they are likely to be flooded with applications to go on the trial, can't the Proximus trial use some of those who didn't get on the MS Smart trial? Eg Dr Chattaway could tell them about Proximus.

  • MDs,

    Slightly vain (but serious) question… would you be strongly against people with MS taking part in cosmetic surgery (in particular tummy tucks)?

    • If that's a euphemism or a Freudian slip, I think you're confusing it with Viagra. Otherwise the natural, raw form of Sativex.

  • Any trial data come from the alemtuzumab/thymus infusion trial looking at reducing secondary autoimmunity? Thanks

    • Any news on Cladribine…actually I do….but I can't say, but let's not speculate. As it stands it is probably a useful drug that is dead as a dodo.

      I can say paper submitted.

  • Is there any known connection between ms and unprovoked pulmonary embolism? Im aware that immobility may be a risk factor, but how about in fully mobile ms patients?

    • This is contentious, the hospital lawyers at least seem to think that when MSers using wheelchairs are admitted to hospitals, should receive clexane (a blood thinner)! I think the answer is probably somewhere in-between with those undergoing surgery or prolonged immobilization due to another additional illness which increases your clotting risk. Note that stockings do not improve risk of PE.

  • Viamin B12 levels in MS. Are MSers vit B12 levels checked at diagnosis? I didn't have any blood tests until 7 months after my RRMS diagnosis and I had to ask for the tests. I can't remember if this was checked.
    From what I have read a deficiency may impair recovery or could aggravate MS. Also vit B12 is important for myelin.
    I've got my blood test for my DMT next week, I will ask for my vit B12 level to be checked.

    • From the BMJ Best Practice Guidelines (2013)
      "…neurological disease associated with vitamin B12 deficiency may be irreversible, and early detection can be critical in preventing permanent neurological damage."
      "Patients with unexplained neurological disease (specifically, decreased vibration sense, gait abnormalities, and peripheral neuropathies) should be tested for vitamin B12 deficiency."

      Additionally, all other sources I have found are clear that Vitamin B12 testing should be done in patients presenting with neurological symptoms similar to MS, as B12 deficiency can mimic MS, and needs to be ruled out as a cause of the symptoms. Even if other tests produce a diagnosis of MS it is still recommended that B12 levels should be checked.

      In years gone by, there was a general consensus that unless there were other anaemic markers (e.g. macrocytic anaemia) in blood tests, the patient did not have a B12 deficiency. Fortunately, it is now being far more widely recognised that B12 deficiency can be present without these markers. Unfortunately, the bottom end of the reference ranges for Serum B12 in many countries is still set at a level where B12 deficiency may exist, but because of the low bottom end of the ranges used, the patient is told that their B12 levels are fine, and no further action is taken by either doctor or patient. There is a considerable amount of recent research indicating that the lowest level at which a B12 deficiency can be "safely" ruled out should be raised to 550pg/ml or 400 nmol/L (as in Japan and some European countries), as it has been found that deficiencies can begin to appear is CSF below 550pg/ml.

    • Re “because of the low bottom end of the ranges used, the patient is told that their B12 levels are fine, and no further action is taken by either doctor or patient”
      I was diagnosed with MS in 2013 and had a lot of worsening neurological symptoms in the five years before that, but no investigation of these was suggested by my doctor. The neurologist I eventually saw also didn’t do any blood tests for anything until when I was about to start on Rebif. About 12 months ago when I got a copy of my records from my doctor I found out that my B12 had been tested in 2009 and was 190pmol/L at that time but where I live you are only considered deficient if your level is <150pmol/L. It makes me wonder now if I actually had a B12 deficiency in real terms, and if this has been a factor in me now having MS or has made my MS worsen more quickly – but that’s a question I will never have an answer for.

  • The week after the much delayed vaccine for meningitis gets the go ahead, we have another drug scandal in the news for macula degeneration. Not much hope for MS. I recognise the development of drugs costs money, but I'd like the CEOs to look the parents of children who died and seriously disabled in the face and justify their pricing policies. How many MPs with shares in drugs companies?

  • Anyone clued up on b12 and comment on a level of 350? Some say normal some say low for European standards? Would this level be a possible Ms mimick

    • Do you mean 350pmol/L or 350pg/ml? (different units of measure are used in different countries, and 350 may be in the "grey zone" in one country but not so much in another as there is quite a difference between the two measures)

  • It was done in the UK and was just told 350 not any unit of measurement
    I requested another as I was supplement with a large b12 supplement at the time but I was told it would make no difference??

    • Anon at 2.55pm – if your B12 test was done in the UK it was probably in pg/ml. There is plenty of quite reliable information on B12 deficiency on the internet – but as commented on by Anon at 4.28am there is a problem with ongoing arguments around what levels indicate deficiency. B12 is non-toxic even at quite high doses, and is water soluble so you just piddle out any excess your body doesn't need. I'm playing it safe and taking extra B12 – I don't need a B12 deficiency on top of MS! (and Methylcobalamin is recommended for MSers – not Cyanocobalamin)

    • A hint for those who seem to be new Anony-mouses posting – use the "Reply" link underneath the comment you want to contribute to rather than the "New comment" link at the bottom of the webpage – that way comments, discussion, questions, and answers on the same topic will remain together instead of being scattered around and disconnected from each other.

    • Methylcobalamin vs Cyanocobalamin (and more…)
      Vitamin B12 is cobalamin, and various forms are available for both oral use and injection. Oral B12 can be taken as a standard tablet (i.e. swallow with water), or as a sub-lingual form, where a small tablet or lozenge is place under your tongue and absorbed through the skin. Using sub-lingual B12 means that you actually get the B12 you are taking and it will not be affected by any undiagnosed gastric absorption problems you may have. If you do have a B12 deficiency your doctor should be trying to find out the cause, and checking that it is not a gastric absorption problem such as found with pernicious anaemia.

      Cyanocobalamin is available as an injectable and is also the most commonly available oral form – this is because it is cheap to manufacture. If you look at almost any over-the-counter B Group or B12 vitamin supplement you will find that the B12 it contains is Cyanocobalamin. People with the very rare condition called Leber’s hereditary optic neuropathy must never take Cyanocobalamin as they are unable to excrete the very tiny cyanide component which is in this form of cobalamin.

      Some studies have indicated that Methylcobalamin (and Hydroxocobalamin – another form of B12) are more effective in treating the neurological impacts of B12 deficiency than Cyanocobalamin – it's thought this is because your body does not have to deal with the cyanide component before being able to utilise the B12. Other studies have also shown that Methylcobalamin remains in the body up to three times longer than Cyanocobalamin.
      (Note that extremely large doses of Hydroxocobalamin are used intravenously for treatment of cyanide poisoning)
      http://emedicine.medscape.com/article/814287-treatment#aw2aab6b6b4

      Prof G recently commented in one of his posts that while in Australia he had been asked about possible roles that diet may play with MS. Today many commercially produced foods are fortified with folate, so folate deficiency should not be a common problem in the Western world. However, there is a problem in that additional voluntary folate supplementation can mask symptoms of B12 deficiency by addressing the anaemic markers in blood tests. This can allow neurological damage due to B12 deficiency to continue unnoticed, so extra folate supplements should not be taken without B12 status being checked first. Long term use of NSAIDs such as those used to counter the flu-like side effects of interferons used for treating MS can negatively affect folate absorption, resulting in a folate deficiency, which then affects your ability to utilise B12. Low folate levels can also produce false high blood test results for serum B12, so additional tests for Homocysteine, Methylmalonic acid (MMA), and Holotranscobalamin (Active B12) are recommended for a complete and accurate B12 picture if there are any doubts about a patient’s B12 status (high Homocysteine levels can results from low B12 levels and are also a risk indicator for cardiovascular problems).

      One estimate is that in the USA possibly around 4% of people diagnosed with MS are actually suffering from a B12 deficiency instead – and obviously no MS drug in the world is going t help them, as the real problem is not being treated. Given the costs and side effects of MS drugs, thorough testing of B12 status in anyone suspected of having MS is essential, not to mention the adverse impacts of being misdiagnosed (as also recently posted about by Prof G).

  • In the course of their research, the scientists determined that the virus was sending small RNA molecules into various areas of the brain, even when the virus wasn’t spreading. The RNA leads to an immune response that ultimately damages the nerve cells, which is what leads to the symptoms of MS

    This was from a study on ebv and Ms
    I am almost convinced the ebv theory holds water and will eventually lead to a 'cure'
    It would explain so much regarding the 'success' of the current treatments

  • Oh and this from a virologist on why people should take high doses of vitamin D3 which is recommended for Ms patients
    If you take vitamin D3 capsules (approx 1000iu/daily for each 25lbs you weigh) for 3 months then test 25(OH)D and adjust your daily intake so you stay above 50ng/ml your immune function will be better able to keep on top of infections and there will be less chance of Epstein-Barr resurfacing.

  • Prof G mouses
    What's your take on this study? Suggesting cordycepin helps to downregulate the Ebv virus and associated viruses? I've copied a snippet of the study here and linked the full study.
    Would you suggest msers try this? It's available as part of a immune boosting supplement you can buy online

    Several research groups have reported that cordycepin has antiviral activity against several viruses including influenza virus, plant viruses, human immunodeficiency virus(HIV), murine leukemia virus, and Epstein-Barr virus (EBV). In this study, we identify the epigenetic mechanisms by which cordycepin exerts its anti-gammaherpesvirus effects. We show that cordycepin possesses antitumor and antiviral activity against gastric carcinoma and EBV, respectively. A comparison of the CD50 values of cordycepin and its analogs showed that the lack of a 2'-hydroxyl group in cordycepin was critical for its relatively potent cytotoxicity. Cordycepin treatment decreased the rate of early apoptosis in SNU719 cells by up to 64%, but increased late apoptosis/necrosis by up to 31%. Interestingly, cordycepin increased BCL7A methylation in SNU719 cells by up to 58% and decreased demethylation by up to 37%. Consistent with these changes in methylation, cordycepin treatment significantly downregulated most EBV genes tested.

    http://www.ncbi.nlm.nih.gov/m/pubmed/25621301/

  • Prof G and mouses
    Further to my previous post regarding cordycepin, am I right in saying it is actually one of the or a form of the active ingredients in Gilenya of all things? Big pharma taking something readily available and rebranding it to make money?!
    Also the suppression of EBV by cordycepin and the success of Gilenya could be explained because of cordycepin, this would further support the charcot project ?

    • Cordycepin, or 3'-deoxyadenosine, Because cordycepin is similar to adenosine, some enzymes cannot discriminate between the two. Therefore, it can participate in certain biochemical reactions (for example, be incorporated into an RNA molecule, thus causing the premature termination of its synthesis.

      Gilenya is a sphingosine-1-phosphate receptor modulator it was derived from an immunosuppressive natural product, myriocin (ISP-I) through chemical modification. Myriocin was isolated from the culture of a fungus

  • This blog is about as useful as a wet paper bag. I got respect for prog G wjen he puts a theory out tgere and sticks by it trying to prove it. But the rest of you are wet blankets who provide politicians style answers all people ask for is an opinion not just a load of old rubbish which everyone knew in the 80s and a bunch of politically trained scientists who are afraid to talk.

    • I think this forum is very valuable as a summary of research, with some interesting insights direct from researchers. But it is to some degree what one makes of it. There is no point asking questions to which there are currently no answers available, for whatever reason. And if an answer to a particular question is not forthcoming, there is no point in banging on about it. I think the Mice sometimes try too hard to communicate (and perhaps on stressed off days the professionalism slips slightly), and some people asking questions expect too much.

    • You want an opinion then I will give one as a wet blanket….Please do not trip over your lower lip, when you read this

      If we don't say your ideas are great and give you pat on the back so you can pop down to the health food shop and blow your savings for some nutriceuticals, you will spit the dummy and have a sulk. Likewise if we say your ideas are pants then another sulk…If we don't know the definitive answer and sit on the fence, then another sulk.

      Dammed if we do, dammed if we don't but I can say we won't. ProfG may be willing to give advice and does occasionally do so, this is part of his Job as a Doctor, but it is not the job of scientists to give medical advice…so you will just have to lump it…if you don't like it. However happy, not to give any comment if you wish but I can assurre you that in many cases ProfG will reiterate the sitting on the fence.

      I will say it is very,very unlikely that we are going to endorse anything and particularly nutriceuticals, unless there is solid supportive evidence.

    • P.S. Nigel Farage sticks his neck out…but I doubt too many of you will reward this outspoken behaviour and will be backing the usual suspects when it comes to the election…..put your neck out and off comes your head:-).

    • There will always be questions on this blog, that to those that have had MS for years know the answer. The newly diagnosed are not privvy to this knowledge. Whatever your opinion of this site, it gives people a bit of hope that there are professionals all around the world researching MS. Nobody is forcing any of us to read this blog.

    • MouseDoctor – why do you assume "Anon April 04, 2015 8:56:00 pm" was referring to nutriceuticals? Never mind. What I'd like to say is that using inflammatory language (e.g. "Please do not trip over your lower lip, when you read this… If we don't say your ideas are great and give you pat on the back so you can pop down to the health food shop and blow your savings for some nutriceuticals, you will spit the dummy and have a sulk.") just wastes your time and makes things worse.

    • To Anon at 8.56pm
      If that's your opinion then you are entitled to it. If you don't like wet paper bags then go and find another blog to grumble about, but there are plenty of us out here in MSer land who get a lot of value from this blog. As Anon at 9.03am said – nobody is forcing you to read it.

    • It seems as though sometimes you aren't speaking (or writing) the same language. So I find it funny (ha ha) and peculiar all at once.

  • To MouseDoctor, MouseDoctor2 and all MSers reading this…

    Have you heard of (or do you experience) tightening/pressure around the temple area on both sides of the head?
    Can this be related to MS as well? I've been experiencing it for quite some time now.

  • Vitamin D question. In this era of highly effective therapies (HSCT, Tysabri, Lemtrada), has anyone done a study on Vit D levels before and after treatment?

    Just wondered if that would answer the cause/effect question. I.e. If low Vit D resolves when inflammation is controlled, it would appear to be an "effect" rather than causative.

    Whaddaya think?

    • Good question, i will let profG answer this, it should be easy to answer with lemtrada bloods as they arebeing bled every month.

    • I thought it was important that my son take 5000iu vit D supplements post Lemtrada as his immune system had gone back to its early days. I figured that if he had a naive immune system but was replete in vit D it might develop in a more robust way able to battle any nasty MS inducing cells

    • Vitamin D is not tested as part of the Alemtuzumab (Lemtrada) long term follow-up, as it's primary goal is to test the longterm efficacy and safety of the drug. Maybe it's a study which Dr C in C can take on.

  • If it doesn't resolve, doesn't prove its causative I guess but at least it narrows the options and would be suggestive that there is more to the association, warranting investigation (albeit probably not likely to get funding!).

    • Look at this issue of Vitamin D I think controversial. Here in Brazil there is a neurologist who treats since 2002 patients with vitamin D3, at very high doses (when I speak at high doses are high doses even, well above 20,000 iu daily, we have seen reports of taking 100,000 daily ui). He created like a "protocol" to treatment with high doses of vit D3, which is accompanied by a fully free calcium diet and including drinking plenty of water. Patients who are on the treatment created by internet communities, facebook which they reported their stories in treatment. And they say being with controlled disease and the recovery of some functions already lost … Anyway here this treatment as I said is controversial, as it has no scientific resplado there have been expressions of the National Council of Neurology of him, positioning itself against . They say that this doctor refers only to positive results, and hide the q were not successful … I take vit D3 prescribed by my neurologist but as replacement dose for I had levels below 30 nmol / L occurred when the first outbreak that made me diagnose the disease … but I am curious if one day someone will be interested in testing this protocol created and put it in check the light of scientific studies, as daily doses of 5,000 ui they say "do or tickle in MS "…

  • What is prof Gs opinion on vitamin D and quantities? I know they're doing the PrevAnz trial in Australia but that's as a preventative not a help when diagnosed

    • On this blog page:
      "Please note that we actively monitor vD levels in our patients and supplement to a target of >100nmol/L, but less than 250 nmol/L. Why? We do this as part of our bone health and not to modify the course of MS. Unfortunately, we have no data to support the latter. The dose of vD supplementation we recommend is based on the advice of the Vitamin D Council."

  • Have you seen this study published in PlusOne?

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0122048

    They looked at the association between a central component of the innate immune system, C3 protein, with the activity of cholinergic metabolism and neurodegeneration markers in both relapsing-remitting and primary progressive MS.

    But then the more I read these more questions for me research is created, in which time MS is primarily an inflammatory disease, and when she becomes not only inflammatory and becomes degenerative, or degenerative would be from the start as you think Dr. Peter Stys? Think about it even more after the publication of the study Lassman et al. speaking be the inflammatory process the driving force behind to degeneration (progressive phase) … But it would be really so? MS could start independent of inflammation neurodegeneratriva? … I imagine the head of You Docs and researchers, should give a "knot" …

    • All I can say is the announcement will be soon now. It will be posted on the blog as it happens.

  • Brilliant good to know
    Is it a breakthrough good news? A treatment good news? A 10 year away possibility good news? Orrrrr….
    Ps your the best mouse ever

  • Successful biotin trial for progressive ms my best guess then a successful charcot 1 then we will all be happy ;p

  • I assume based on this mouse that the announcement to be made is not by yourselves but by some other company or neurologist? And The problem you have is we are only speculating based on previous comments such as '2015 is a good year for you' 'big news on the way' 'new announcement may change it all'
    How do you expect anything else?

    • I would expect that….you would stopping poking and prodding:-)
      Assume nothing…….and please stop speculating it will not do you or us any favours….

      "The problem you have"….is no problem for me…..you have been asked to stop speculating.

      however, 2015 has already been a good year for us based on what we have already announced. .(http://multiple-sclerosis-research.blogspot.com/2015/02/teamg-research-from-idea-to-msers.html)…..it was big news and the new announcement may change all for the people affected……Not many scientists ever get their ideas translated to human treatments……………..it is very,very, very big news for us.

      It has taken monumental effort and a lot of cash to cross the Bridge of Death…twice…That is a very, very, very big thing, Will it be of benefit to "you" I have no idea, maybe not. It maybe in a few years

      So you did not see this as important?…..So you are expecting more than we are giving? (This is rhetorical question…We know you want more..so no comments please)

      Maybe there is more….. maybe there isn't….Simple fact is we all have to wait to see what gets published both you and me…….The next breakthrough could be in a couple of days/weeks but for some it could be a couple of months/years/decades…damned if you do…damned if you don't!

      Some of you are simply winding yourselves-up

  • It's not us winding ourselves up and I'm not getting into an argument with you as I do appreciate what you guys do, but comments like your problem is not mine is a bit harsh coming from a neuro trying to find ways to better a disease they have no grasp on how hopeless it can be, we all have one shot at this and Ms is one people's shot, it ruins families, businesses and people so to take it lightly is not fair

    • Sorry if the comment has caused offence…and shows the problem of communicating in this medium, as the words do not have a context. My interpretation of the context is not the same as other peoples interpretations…..clearly. You are ms interpreting what was meant.

      As I have stated many times we are not punching bags and we will sometimes react. We are not all neuros,….,who largely do not respond to comments.

      I will just shut up now and let you speculate in peace.

  • It was actually worse 'the problem you have is no problem for me'
    No you don't have tingles, spasticity and all the other things that come with it so well done

  • I understand the context might have been taken differently and I apologise no offence intended. As I stated before we do appreciate the work you guys are doing and understand its people like you who think for the genuine reasons not pharma profit that will eventually cure or stop the disease, so keep up the work please on behalf of everyone.
    It's a difficult place sometimes when you have a bad day and remember you guys are our heroes to a certain extent, your the fireman coming through the window, we just need that break

    • And rest assured that we will not stop striving with everything in our power to ensure that you get that break.

    • Gosh, loved that comparison of fireman coming through the window when the house is on fire …………

      yep, that is exactly how I feel – strangly enough I almost can feel the heat in my head

      it would be wonderful to get some break in my head to cool things down

    • "And rest assured that we will not stop striving with everything in our power to ensure that you get that break."

      You bring tears to my eyes! I would hug you if I could. Or perhaps rather make you a cup of tea and bring you biscuits. (I'm not a touchy-feely person.)

  • Thankyou MD2 you guys don't realise how that attitude helps, it's good to know we're not alone
    If you could hurry up though that would be great 🙂

  • I think this fantastic blog! Discover the MS for a year and did not think there was a blog like this, made up of professionals interested in informing and acting in incessant work to try to understand the mechanism of action of MS, or the possible causes and who knows the cure for it … As I saw a picture posted here the other day to me youare Paladins trying to fight a war in which the enemy is hidden … Let us not lose hope, do not lose Docs hope, you work is very important to us, in fact you are leaving a legacy for humanity, are writing the name of you in posterity! Avante Docs!

    • Anon above is going slightly overboard. The MS researchers around the world are doing what they are paid to do – academic research. Results of EAE experiments are of no real interest to me, nor is the latest finding regarding MS genes. it is not the job of MS researchers to come up with licensed treatments – the MS researchers come up with ideas / targets which pharma may take forward. We are placing too much pressure on the Mice Doctors. In reality a drug which fully addresses this disease (inflammation / protection / repair) would put the Mice Doctors out of a job – would we really want that? MS is an inconvenience for us but is also and industry (pharma and academia) with thousands of jobs and billions of revenues. Why would anyone want to seem that end?

    • Personally and I think I can speak for all us Mouse Doctors, if a cure for MS appeared tomorrow and put us all out of a job then I would be absolutely fine with that (no really). There's plenty of other areas we could use our expertise in, I've got some good ideas for other neurodegenerative diseases that I'd love to have a go at given the time I've got left.

    • MD's, please know that at least some MSers care about the results of EAE experiments, or the latest findings regarding MS genes. Basic science related to MS is very interesting, even though it will most likely not lead to immediately available treatments. Thank you for making research findings accessible.

    • Having studied science myself, I know the passion and dedication that goes into great scientific research and I am not cynical about those who spend their life hours searching for answers to diseases like MS. As someone with PPMS, researchers have my heartfelt gratitude for what they spend their time doing. And I hope that you can/do make a living from it.

    • Anon 5:33
      Thanks for the kind words, despite what the naysayers claim we have learned a lot from some of the EAE work over the years. Our model has directly informed us where we should be concentrating our bench to bedside strategies such as neurpprotection or symptom relief which is now starting to bear fruit.
      Anon 10:05
      Again thanks for the kind words. As researchers we can make a reasonable living from what we do but it isn't my primary focus, it is to make the lives of MSers, with all forms of MS better and I think by the time my career ends the situation will be vastly improved compared to when I started.
      All the best both.
      MD2

    • The mice are nice, but I can't tolerate any more failure. Eagerly awaiting the phenytoin results. If not a success, mice should be punished. I'm not talking cutting back on cheese, but solitary confinement in some dingy prison. I think we'd see some real progress if a stick rather than a carrot was used. I'm planning to steal Mouse's precious Heavy metal Collection and detroy and album a week – I bet we'd see some progress then.

      Regards as always

    • We've made plenty of progress all we need is for the neuros to do is to work out how to translate it.
      P.S. There are a few turkeys in my collection you are welcome to have and destroy them:-)

  • I have been thinking about my MS it's been a real learning curve for me.
    Doctors are there any MS symptoms that can cause very severe anxiety? I know from experience phonophobia can. This can be triggered from a VI nerve palsy and it came from hypervigilence/hyperacusis.

  • How about us MSers being educated as soon as MS is suspected of certain potential problems.
    I had a very nasty pseudo relapse, very heavy legs. I visited my GP and did a urine test , they sent off the sample. It took ten days for me to get a call back from a GP (after me chasing them many times) to say yes there is signs of infection and have I had any other symptoms. I replied yes I have had a sore throat for a few days and urinary urgency. I was prescribed antibiotics on day ten!!!
    Unfortunately this was too late for me the damage to my legs has been with me for six months now. I purchased a dipstick test from the web and do my own testing now, if sign of infection I go to the hospital out of hours GP that day, do a urine test there and they just give me low grade antibiotics straight away. I have half the packet of antibiotics left ready for another bacterial infection.
    If someone had advised me of this before experiencing it my legs could be better than they are today. I am pretty gutted about this. I keep coming across MSers that haven't been informed infections can trigger relapses and pseudo relapses.
    If the NHS is trying to help MSers hold back some deterioration then there needs to be some changes made urgently.
    My legs are that bad that it has contributed to me not being well enough to work. I even saw a general neurologist half way through this pseudo relapse and they never asked me have I had any other symptoms…. such as sore throat or bladder issues. Grrrr I will try not to get stressed over it.

    • Why do you have half a packet of antibiotics left? Did anyone tell you that the whole course should be taken? This should be in the notes in the packet. As for being told what might happen, it's quite difficult to tell a patient something that might happen. I didn't have a urine infection until over 20 years after diagnosis. I had no idea what the symptoms were. Sometimes we have infections elsewhere and don't know we have them.

    • Agreed. You should ALWAYS finish your prescribed course of antibiotics. Failure to do so increases the risk of the development of antibiotic resistance, which as I'm sure everyone is aware is a huge problem and getting worse. I speak as a one time microbiologist.

    • That first pseudo relapse I took the whole pack of antibiotics.
      The next time I got a UTI I went staight to the hospital out of hours GP. I was informed the antibiotics may or may not help and to take for three days but I may need to get other antibiotics if they don't work. I took them for three days and it nipped it in the bud. I drunk alot of water and the UTI went by day two.
      I just wish someone had informed me that MSers may get infections and UTI's early on. My current MS consultant mentioned it would be something my MS nurse would discuss with me (but didn't). He also told me 'good' that I know about this, can self manage and his team do give some MSers a dipstick test and antibiotics for this very reason.
      My dad and his friend are not MSers and they have had UTI's before so they are fairly common for the general population who have other illnesses.

  • As i've still got the packet there is a sticker on the back which is printed. The pack of 14 tablets states:
    Take ONE tablet TWICE a day for 3 days. The three is written in pen and so is my name and date. The 3 is definately a 3. Three days is what he also told me.
    Underneath is printed keep taking the medicine until course is finished, unless you are told to stop. Perhaps the GP made a mistake??? I leave that up to you to decide.

  • In which case take the unused antibiotics back to the pharmacy. Don't keep them just in case for next time.

  • Dear Doctors, I wrote to NICE to inform them that quite a few MSers report stress triggering relapses and can exacerbate symptoms and this needs to be incorporated into MS treatment guidelines urgently. Below is the response, I thought you may be interested.

    Dear XXXXXX

    Your email has been escalated to me to review the information that was provided to you in response to your original query. I am sorry to hear about the impact your relapse has had on your health and ability to work.

    As XXXXX explained in her email, the Guideline Development Group (GDG) were unable to make a recommendation specifically relating to stress as the evidence for its influence was unclear. Surveys such as the one you highlight are important in building the evidence base, especially where they are part of well-designed studies that evaluate the impact of stress on relapse rate and/or progression.

    Our guidelines undergo surveillance reviews every 2 years after publication to decide if an update is needed at that time. This surveillance review decision is informed by a number of stages of intelligence gathering, including searches for evidence, related guidance and qualitative feedback from other NICE departments, the National Collaborating Centre (NCC) that developed the original guideline and the Guideline Development Group (GDG). If new published evidence about stress becomes available that would potentially impact on our existing recommendations, then we would consider updating the guidance. With your permission, I will also keep your correspondence on file as part of this process.

    Kind regards
    XXXXXXX

    • I hope a doctor responds to this.
      Interesting question. You might not have a relapse being ppms but whats happening under the surface with an infection? It makes sense to me that infections could contribute to driving progression in ppms.

    • Just recovering from a cold virus – not funny when you have PPMS. I have the impression that viruses accelerate damage. I would really like to know more about this too.

    • The cold gave me incapacitating fatigue in the recovery phase. Cannot know for sure as yet, but I suspect it has accelerated deterioration of my walking ability.

    • My husband experiences the same thing. A cold makes his walking deteriorate,this time he fell in the middle of a road he should not have been crossing. I sometimes am amazed he is still alive considering the risks he takes with his body. He has PPMS.
      If Biotin helps improve then great,cos his illness and attitude are leading me to an early grave:-(.

  • Docs indeed lacking research in the area with certain populations, or MS affects more caucasians than blacks and asians, and in fact is still where would fit the theories of contagion EBV and the relationship with Vitamin D3?

  • Team G, I keep thinking about how onions, leeks, chives and garlic are natural antiviral and antibacterial. With the recent discovery that a 1000 year old recipe of onions or leeks, garlic, wine and cow bile kills up to 90% MRSA. Not too nice the cow bile bit but I understand that it's the ingredients working together that is very effective.
    I have had several bacterial and viral infections triggering MS relapses. I know of other MSers that have had relapses triggered from viruses too. Perhaps there is something in the onions, leeks and garlic for MSers, with infections causing deterioration.

    • There's also oil of oregano plant, that kills viruses, parasites, fungus and bacteria and is an antihistimine. Thyme and oregano oil have anti inflammatory effects.

    • I dont want to appear rude but this is a research blog and am afraid to say their is not enough evidence to support the views that neutriceuticals and herbs are of much use.

    • You can please yourself – I'm just telling you what I find helps me, as a person fighting PPMS! Heaven knows, my neurologist has nothing to offer me. I am well aware that there is no specific research to support my experience with nettle tea, and that many will just raise their eyebrows at me. I don't claim it is good for everyone, only that it helps ME. If you have a problem with that, why publish my post on your research blog?

    • Colitis is an autoimmune condition. There is research on the use of oregano oil. A study reported in the journal Mediators of Inflammation examined the anti-inflammatory effects of the combination of thyme and oregano oil administered at three concentrations on mice with induced colitis. They found that the treatment decreased the levels of pro-inflammatory cytokines IL-1beta, IL-6, GM-CSF, and TNF-alpha, especially after the application of the medium dose of 0.2% thyme and 0.1% oregano oil. The medium dose also significantly lowered the amount of the IL-1beta and IL-6 proteins. Administration of the medium dose decreased the mortality rate, accelerated the body weight gain recovery, and reduced the macroscopic damage of the colonic tissue.

  • Biotin – I have started to take the dose that the trial is doing. I take 10×10,000mcg tablets 3 times per day. I know you adviced not too but I am impatient. Anyway I feel fine BUT I have gone hyperthyriod after being hypo for 6 years! For years I have been on 100mg of thyroxine tablets. After 2 weeks on the Biotin I had my T4 levels checked and it was over 100. GP told me to stop taking the thyroxine and get tested again. The T4 is still over 100. I am thinking it must be the Biotin as it is the only thing I take in excess of the recommended amount. I think I will stop it and get the bloods done again next week.

    • Joanna, please keep us updated on your thyroid checks – I am taking the same amount: 100mg daily and would love to know how things are developing while taking biotin for the future.

      Thanks.

    • hi I will. The odd thing is that I feel so good on it but I better stop just to see if it normalises the T4. My doctor has never come across someone that has gone from hypothyriod to hyperthyroid. I dont have any symptoms of an overative thyroid which is why I think it must have come on quite suddenly. For you to get symptoms you have to be overctive for a while. The last check I had was 6 months ago and it was fine. GP is sending me to see a endocrine specialist..

    • there is no evidence yet that this is useful and as to the side effects we do know. I have asked for a copy of the results of md1003 but have no response so far.
      However be warned it may not be safe. In UK ensure you are part of MS register and keep a note of your dables of treatment.

    • Not on register as dont have a firm diagnosis yet. It is either PPMS or delayed radiation myelopathy – neuros cant decide which. So far been in limbo since 2011 when investiagations started. Feeling frustrated to say the least !

    • One should also check the overall composition of typical biotin supplements – the tablet's weight is much greater than 10000 micrograms, what's the rest? Multiplied by 30, can it cause side effects?

    • Joanna
      You may find info on the following link useful – and no doubt there will be other information lurking on the web – probably some more substantial information elsewhere
      http://www.biotin.com/miscellaneous/biotins-known-drug-food-and-lab-test-interactions
      Extract from the above webpage:
      "Biotin has been reported in two cases to cause inaccurate results on different types of thyroid lab tests:
      •Free thyroxine (FT4) (false-high)
      •Thyroid stimulating hormone (TSH) (false-low)"

    • Indeed this is the reported adverse effect and this was on the thyroid, it is claimed the biotin interferes with some of the antibodies in the assay

    • Thankyou for this, at least it says the results are inaccurate as opposed to indicating the thyroid has actually gone mad.

    • Joanna – the link I posted about biotin and potential for false high T4 readings does NOT confirm that the biotin is the cause, it just indicates a possible factor in your unexpected blood test results. You still need to discuss this with your treating medical practitioner, and not just assume that biotin has caused the high reading. I posted the link because it may be something that your doctor is not aware of (they can't be expected to know everything about everything). Even if you are a patient who is proactive and tries to be as informed as possible, doctors still have many many more years of training than any of us patients (unless we ourselves are qualified medical doctors).

    • I suspect we are about to find out if the the results of MD1003 appear positive when presented at the AAN in 8 days time.

      The ultimate side effect of any drug is death and too much biotin can kill based on animal studies. They will be reporting on the side effects seen in their trial, who knows it could be dangerous in the long-term so please bear this in mind. One of the things that pharma do after a drug is licensed when they keep monitoring for side effects as more and more people take the drug and the rarer side effects pop-up. I am sure we will see some. Was that reported by Joanna above a side effect, a co-incidence?, a mechanism of action? This is why proper data needs to be collected and a reason why we can't support self-medication without having data to hand.

  • Docs I saw recent news again talking about the results of the Anti Lingo-1, which will be presented at the annual meeting of the American Academy of Neurology, held from April 18 to 25, as you should be acquainted. So can actually be a promising drug for the repair of myelin or Biogen is trying to push it for approval by the FDA anyway?

    • We have seen the headline results and it failed to statistically hit its end point so there is no way they can push the FDA to do anything at the moment. However, there is another trial in MS that will finish I think towards the end of this year which may be informative.

      In the study to reported at the AAN, I think you will find that treatment was started late (after a month) when the damage was done i.e. you can't remyelinate a nerve that is not there. So you need to have an anti-inflammatory and a nerve protector to save the nerves from damage and then remyelinate them. However, on the plus side there was a trend indicating that the visual evoked potentials increased so this is encouraging. We can report next week when the abstracts are published. Maybe ProfG can give an update. However this is only the beginning in this story as 99.9% (according to Biogen) of the antibody injected is wasted if you have a drug doing the same thing it should be more efective if it can get into the brain

  • Ah and MD indeed lacking research in the area with certain populations, or MS affects more caucasians than blacks and asians (NMO is quite incident between asian), and in fact is still where would fit the theories of contagion EBV and the relationship with Vitamin D3?

  • I really hope someone who has more experience with MRIs can help me because it is very urgent (heavy legs, numb chest).

    Are pictures from a 0,35T good enough to check for new lesions? I need to wait for 2 month for a 1,5T MRI but could get a 0,35T within a week.

  • Re. MedDay press release on Biotin study. It doesn't say anything about safety. Seems like they would trumpet that as well as the endpoint result. It is hard to wait one more week. I know many PPMS patients have already started taking 100 mg of over-the-counter biotin.

    • It a company they are goiñg to be upbeat,.
      Talk is on friday
      Question to ask is what about off label perscription

    • Off label for ? Sorry, I really am not sure if you have a specific condition in mind or not.
      I'd like to know if people have to be on biotin for life or just the 48 weeks as per the trial.

  • Am I right in thinking that remyelination will only help if nerves have not been "coated" in scar tissue? So improvement would hit a "ceiling" in each individual according to the age of damage / extent of scarring?

    p.s. Please get rid of the "click on all hamburgers / beer / bread" check for proof of not being a robot. It doesn't work properly if you have certain anti pop-up / advertisement software in your browser as I do.

    • Interesting question. Really need MD to read the paper and interpret the results. Oh and still waiting for the surprise good information-unless of course you meant Biotin:-)

    • Maybe the company have done those experiments but i doubt it as we never see experiments addressing this aspect. We have the technology to test but need the cash to do it.

  • Any thinking on testosterone for males with Ms?
    I see from previous studies it slows the rate of atrophy which is a big factor in disability and progression I'm told? This would support the pregnancy link in women too surely? And the age degeneration with lower levels of testosterone?

  • Team G, NICE have informed me they do not recognise that stress effects MS, so it is not considered in their guidelines for treating MS patients.
    They say this because studies have not come up with confirmed evidence.
    My ms nurse in an email to me has informed me many ms patients are effected by stress.
    This doesn't add up.

    • I suspect that your MS nurse is referring to anecdotal evidence. Stress is a difficult thing to analyse – e.g. what is highly stressful for one person may not be for someone else. My neurologist pooh-poohed the idea that stress has any significant effect. Personally, I suspect that if it does, it would have to be long term stress that is constantly present (e.g. not the kind that you can leave behind in the office at 5pm), the kind that stops you sleeping, that's there as soon as you wake in the morning etc. Something like bereavement, breakdown of a relationship.

    • I had a relapse triggered by long term stress and severe anxiety from phonophobia. It's left me too sick to work.

  • If you mice get a chance can you report on the longer term data for alemtuzumab next week that heard was coming out. I'm starting my infusion tomorrow and would like some (hopefully) good news to keep me going through the 5 days. Thanks mice. There's some cheese in it for you!

  • ProfG what has happened with the data of Gilenya in PPMS. It has beensuggested that the data would be presented at the AAN.
    Why are Novartis not INFORMing or are they..What does this mean for effects of Siphonimod

  • What do think MD/ProfG? Looking at the abstracts being presented at the AAN, there does not seem like there is much innovation it is all company focussed stuff

    • yep, but it is a learning experience for neuros and they need to learn abut current MS drugs they are prescribing no some pipedream that may not go anywhere

  • What's all this about athlete's foot cream 'curing'ms? It was in the Daily Mail yesterday, about miconozole and a steroid being used on paralysed rats who were then massaged with foot cream and got better. Is it April 1st?

  • Docs already "decided" to MS is an inflammatory disease or excellence is primarily degenerative, as Dr. Peter Stys? I'm new here (about 2 months), I'm trying to read everything possible to keep pace with posts and discussions …

    • MS is an inflammatory disease….if we look in the brains of any MSer inflammation is there…likewise so is degeneration…..Dr Stys can't work out which is the Real MS to stand Up and you will find there are differing opinions…..not as much as in the old days as view are more monoculture these days..

  • I and many others are waiting for and praying for good news at the plenury speech regarding md1003. Any idea what time that news will filter through?

  • Just my opinion: a couple of weeks ago there was much chatter on this blog about good news relating to neuroprotection / treatment for progression. I waited for the announcements at the AAN conference now feel pretty deflated. Phenytoin reduced nerve fibre loss in optic neuritis if given early. Anti-lingo anti-body looks like there was a minor improvement relating vision following optic neuritis, but not a massive benefit, biotin failed to deliver given all the hype. These treatments are five years away from the pharmacy shelf and some may never make it. Does anyone else feel the same? It's Saturday morning and nothing has changed for people with MS. My mind now turns to the eagerly awaited results of the Charcot project and the Ocrezelumab trial. Some nerve protection and repair is all I am after – will I see it in my lifetime?

    • The phenytoin is neuroprotection and I warned you that it would need more work. This is indeed great news because it says we are on the right track. If people would volunteer for the proximus trial then the good news would come quicker but i am concerned this will need to shut down and it seems we will have to do the 5 year
      trials instead. There is evidence that we can neuroprotect and repair and this was not there last month. This is progress
      However be warned about expectations. Ocreluzimab is unlikely to have a dramtic effect that rituximab did not so it will inhibit relapses in relapsing progression anything more will be a bonus and so if you dont expect it you wont be disappointed. However it will mean we have to add a neuroprotectant on top.

    • Ps i appreciate that good news is delivering a drug to you but these meetings do not do that all they can give is a flavour for the future some distant some not so distant

    • Yep, anon, same here – my Saturday is pretty much a sh********* day right now after the visit to the blog.

      However, I will be off to the pharmcy on Monday to buy some supplements (low dosage) and make further adjustments to my diet and hopefully get some stress-free time.

      I hate hype of any kind however, I am still grateful for the news – I have been here since 2012 – we didn't talk about neuroprotection often back then – and now we have trials delievering first promising results.

      Who knows what the next 12 months will bring?

      I'm waiting for Charcot: I guess the results will be not as earth-shattering as we all are hoping for BUT they will point into the virus direction as cause/one of the causes of MS and will need a bigger trial to validate.

    • Eastern Europe for recruitement?

      London has such a big community – people could ask among their friends back home.

      I come from there originally and people are desperate for trials cos they don't have access to DMTs (except for some few).

  • The streams trial uses Mesenchymal stem cells doesnt it. These stems cells focus on repair and patients dont need chemo to kill old immune system. As opposed to hematopoietic stem cells which reset the immunne system and chemo is required.

  • I know Prof G dicussed TN in MS a few years ago on the blog. Is TN quite rare in MS?

    I have a few TN pains in the area above my top lip they last a few seconds, stinging sensation. I have had quite a few different MS palsys including facial palsy, VI nerve palsy and hemi facial spasms that came and went a few times over a year ago. All connected to ear infections in my left ear. I'm not on medication for the TN.

    http://multiple-sclerosis-research.blogspot.com/2011/08/trigeminal-neuralgia-if-you-have-had-it.html

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