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  • Debi Wilson

    Member
    May 28, 2018 at 4:23 pm

    They do sound very similar, Jackie!
    Doctors must be able to know which is which by lesion placement?
    I will have to read up on this more , thanks for the links and good topic!

  • Jacqueline

    Member
    May 29, 2018 at 12:29 am

    My Consultant ruled in both at the same time, by telling me I  have both PPMS and the Meralgia Paresthetica,  INSIDE-top of right leg-groin area….which now has been been termed as part and parcel of my MS when I have had the spasming’s, and muscle contractions, or what I have called my ” leg coming alive “…I know it is not M-P as on looking that up, it has a burning pain to the OUTSIDE of the leg, that is not something I have ever experienced, and this was coming from a qualified MS Consultant, if he could get that wrong…When I asked GP who referred me after diagnoses what can be done for it, as usual with a wave of the hand and the word ” nothing. ” ….Same as another GP over my painful and burning toes he classed as Raynauds, ( which I now know to be Erythromelalgia) whilst with his wave of the hand once again telling me ” nothing “…. So here I am and having to grin and bare it with the words of ” nothing can be done ” still ringing in my ears…Of course as for MS, I am fully aware nothing will take that away, that is here everyday with me for the rest of my life, however long that may be…Guess all I am saying is medics do, and can get it wrong, but at the end of the day, those MRI machines wont and dont, get it wrong…

  • Debi Wilson

    Member
    May 29, 2018 at 3:04 pm

    True, Jackie!

    We need to be our own advocate!

  • Jacqueline

    Member
    May 30, 2018 at 2:30 am

    Debi…we need to stay in control of our own bodies, we are the ones who know our bodies inside and out, ( we might not be the knowledgeable ones to tell us what is going on with it but, ) we are the ones living in it, and are aware something is not right….Some have told me dont look things up on the websites, they will only frighten you or be in conflict with each other but, I am one who ignores this, I want to look things up….the more I know the better of putting names to my MS symptoms…

  • Debi Wilson

    Member
    May 30, 2018 at 8:49 am

    I agree, Jackie. I research a lot as well, and the findings can be very scary. I remind myself we are all different with unique MS stories.  Tomorrow may bring a cure, so today is for doing the best we can. Eating healthy, exercise, vitamin D, and staying positive,  continuing with whatever is working for us today.

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