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Kath B

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    Kath B

    Has anyone heard of ms hug? (Google it) I have it and according to my neurologist it's nothing to do with MND...... I have both. How unlucky it that. Has anyone else heard of this or is suffering from it. None of the recommended drugs have helped. It does affect people for other reasons not just MS. Cervical myelopathies/ myellitis etc. Any advice out there??

    #2
    Hi Kath Bell - you wrote about this before, sorry you've still not found medication to stop or reduce the spasms.

    Presumably you tried high doses of Baclofen without success - have you tried Tizanidine, an antispasmodic, either in conjunction with Baclofen or as a stand alone treatment? (When my spasticity was at its worse, I took both meds, which helped lots.)

    I wonder if a Baclofen pump would help - it delivers the drug directly into the spinal fluid.

    Which type of MND do you have? xx


    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Thanks for your reply. I'm waiting for genetic test result. They tell me limb onset. Slow but accelerating now. Weight loss too. Probably sporadic ALS..... So many variables as you know. I'm titrating baclofen up right now. Lived with this since before diagnosis....so almost 3 years. It's tedious.

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        #4
        Originally posted by Kath Bell View Post
        I'm titrating baclofen up right now.
        There's quite a lot of scope in Baclofen dosing - I was on max dose for number of years.

        Really hope you find a workable dose. xx
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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