1 year out, myoclonic jerks. Anyone else?

robswife87
robswife87 Member Posts: 209
in Head and Neck Cancer #1

Rob went to ENT and Radiation Oncologist Monday. NED still. Woo hoo.

He has been suffering from myoclonic jerks for about a month. Only at rest at the end of the day. Docs are not sure why.

Has anyone else had these problems, one year out? 

He will take the myoclonus over the cancer anyday. 

Sandy

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I had to look that one up, Sandy....

    I'd never heard of Myoclonic jerks.  Since we get so much radiation to the head, I wonder if it could be damage from that.....it seems tho, that it must affect him when he's tired (you said the end of the day).

    I wonder if maybe checking this out with his PCP and go from there, in case it's unrelated to treatment....just to be on the safe side? 

    p

    SO GLAD to know he's doing well.....congrats on the one year marker!!!

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Jerks

    Had to look this up.  This seems to be what my husband was having and hospice couldn't figure it out.  I checked on the internet about reactions to his medications and saw 2 that he is on.  We stopped Elvail(?) for depression because it said it could cause these jerky motions and especially in seniors.  The jerking almost disappeared.  He still jerks from time to time but nothing like he was doing.  Still not sure if this was the reason, but stopping the medication sure did help stop the jerky motions.

    Wishing you the best -- Sharon

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    sandy, i don't know about the

    sandy, i don't know about the jerks but had to say congrats on one year!!  whoop, whoop.  that's a big deal.  i'm doing a happy dance as i type, cause i'm coordinated like that.....lol.  Go Rob!  praying you find out what's causing the jerks and they have something to make it stop.

    God bless you,

    dj

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Sandy

    Doc would say radiation side effects, just to be safe I would take him to see a Neurologist. I complained for years to my cancer doc and he would just say oh nothing you can do about that. But that is not true there is a lot you can do, I now see a Neurologist about 4 to 5 mounts and he once told me I needed to come to him when I first started to have these problems. So I suggest getting a second opinion from a Neurologist

     

    Tim Hondo

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #6
    Hondo said:

    Hi Sandy

    Doc would say radiation side effects, just to be safe I would take him to see a Neurologist. I complained for years to my cancer doc and he would just say oh nothing you can do about that. But that is not true there is a lot you can do, I now see a Neurologist about 4 to 5 mounts and he once told me I needed to come to him when I first started to have these problems. So I suggest getting a second opinion from a Neurologist

     

    Tim Hondo

    neurological problems

    Can be a result of platinum based chemo.  Jim takes neurontin for the jerks and twitches but it does not completely resolve.  Just part of our new normal : )

  • CherieLW
    CherieLW Member Posts: 472
    #7
    Sandy glad to hear that Rob

    Sandy glad to hear that Rob is NED!  Dad is too! :)  That's the greatest news by far when I hear stories like this one! Praying things continue to look up.  I am not familiar with myoclonic jerks, but hopefully it is something that will go away on its own!  Always praying for you both!

  • joannaw81
    joannaw81 Member Posts: 185 Member
    #8
    CherieLW said:

    Sandy glad to hear that Rob

    Sandy glad to hear that Rob is NED!  Dad is too! :)  That's the greatest news by far when I hear stories like this one! Praying things continue to look up.  I am not familiar with myoclonic jerks, but hopefully it is something that will go away on its own!  Always praying for you both!

    congrats

    Keep it up, wishing both of you all the best!

  • donfoo
    donfoo Member Posts: 1,773 Member
    #9
    Long time no see

    Glad to hear NED! No idea bout the jerking but maybe cut out the red bulls and coffeeSmile

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