Unrelated Blogger Comments December


Sometimes you want to say something that is unrelated to the threads. This is a spot for You. Previous comments can be got at on the posts on the right of the main page.

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  • Useful to know for anyone thinking of going on trials…but neither of the drugs mentioned are yet licenced for use in MS

  • In 'general terms'

    Mrs 'X' comes into the surgery with a stabbing pain (not burning or itching) enough to reduce to tears and screams, in the left ( which does move around slightly, 2/3" either way) shoulder area four years ago.

    Neurologist dismisses any connection with MS.
    (oh btw Mrs X in this case, did finally have an MRI which showed a lesion in said area).

    Subsequent visits to Physios, bone specialist, pain clinics can offer no reason for pain. Prescribed so far, pre gabalin, gabapentin, tramadol, baclofen, slow release anesthetic patches, tens, acupunture, electro acupunture, massage, street cannabis, morphine patches,Nonsteroidal anti-inflammatory drugs, Opioid Analgesics, and probably some others, all with little or no effect.

    Questions Mrs X wants answering, why doesn't anyone address the cause ? (are they too inhibited to go against initial Neuros thoughts) and would a nerve block be appropriate.
    This is a general non specific hypothetical question and any feed back would not be taken as a diagnosis and would not be seen as advice to be acted upon.

    Hypothetically speaking, I would sugest watching someone in so much pain for such a long period of time might be enough for someone to don a 'Batman' outfit and dangle oneself from a overhead gantry on the M25, to try and get someone to at least acknowledge the level of pain, which in Mrs X's case has been refered to on many occassions as being as painful as child birth and the break of a arm as a 'walk in the park' in comparison terms.

    Regards as always.

    • Sounds as if you need a second or third opinion. A nerve block requires a specific nerve to be involved. Not sure if the symptoms are typical of a neuralgia. Is there any associated area of sensory loss? Some pain experts try low-dose lignocaine infusions in this situation.


      The Concerned Neurologist

    • Mrs x does not get sensory loss,It is a stabbing pain that last 1 or 2 hours all ways in left shoulder blade, but moves around within that region, she mainly experiences pain at night but it is getting worse and she is experiencing in the day.She has tried lots of tablets including pre-gablin, gablinpentin, trammdol(bad side effects) but with no effect.

    • How about cannabis, Sativex or nabilone? Sounds like she needs to see a compassionate pain specialist!

      The Concerned Neurologist!

  • MouseDoc, Dr Raj Kapoor is featured in a video interview on the MS Society website talking about phenytoin, and how over 20 years of research, he now believes that this old drug will stop MS progression. I even got a postal plea from the MS Society asking for donations to fund trials for phenytoin and amiloride, both of which they are claiming will stop nerve damage in the central nervous system.

    What's going on here? The two compunds have been rarely discussed on this blog and differ from the stuff you guys a trialling. How many researchers in Britain are doing stuff with existing drugs in progressive MS? When will such drugs get to the bed side? Why has it taken Kapoor two decades just to push an existing drug into human trials? What proof are they looking for? It's all taking too bleeding long if you ask me.

    • We are heavily involved with the phenytoin trial. It came directly from our work on PROMISE 2010 programme. Success? Let's hope so. I agree it is taking long, but then science is generally a slow process. It takes 15-20 years to go from the lab to the clinic. Not sure how to shorten the process.

    • How many neuros are doing stuff with existing drugs.it is going to be alot. Once signed on the bottom line i will explain.

    • These drugs seem to be in trials to do with optic neuritis and the optic nerve. Is it anticipated that they may be neuroprotective of all nerves, or just effective where there is optic neuritis present

    • The optic nerve has been chosen as it is easy to measure its function and monitor vision. We believe that if it works in the optic nerve it will work for all nerves!

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