Diagnosis Query?

JmDc74
JmDc74 Online Community Member Posts: 3 Listener
edited October 2024 in Coffee lounge

Hi, I'm John-Mark, (most people call me JM) I have RR MS, and have done for more than 21 years. (I just turned 50) I use two sticks to walk, and my own wheelchair when I'm feeling fatigued. Or it's a distance. My wife is Indonesian, and we've been married six years.

My question is this: In a recent appointment with my Neurologist I asked her was I still RR, as I've declined a bit with no relapses for at least ten years.

She said if I 'felt' I was now Secondary Progressive, I should tell the MS nurses!!

Do they not diagnose this now? I'm on Tecfidera, (1+ year) but she said it may be damaging my liver if I am secondary?

Is she trying to get me to be a guinea pig for a trial of new secondary drugs?

She has been my Neurologist for many years, and I trust her, but was a little surprised?

Any thoughts?

Comments

  • poppy123456
    poppy123456 Online Community Member Posts: 64,456 Championing

    I'm afraid we are not medical professionals and we are unable to give any medical advice, as it's against the rules of the forum. I'd advise you to speak to your MS nurse or GP. I hope you get the answers you need.

  • peaceofmind
    peaceofmind Online Community Member Posts: 14 Connected

    I understand your concerns at her response. I hope you manage to get another appointment with her or maybe write to her with your thoughts if an appointment is difficult to prompt an an earlier appointment. If you don't have an MS nurse, maybe it would be a good thing to ask for now. I hope you find the answers you are looking for and the care you need.

  • Sandy_123
    Sandy_123 Scope Member Posts: 63,128 Championing

    Hi @JmDc74 welcome to the forum as Poppy said we can't really give you medical advice.

    But I do hope you get to speak to the right people with your questions.

  • JmDc74
    JmDc74 Online Community Member Posts: 3 Listener
    20240827_123347.jpg
  • JmDc74
    JmDc74 Online Community Member Posts: 3 Listener

    Thanks all for your responses, I wasn't looking for medical advice, I just wondered if anyone else had had that experience, or if it was unique to me! :-) Bluebell21 we were on Holiday in Scotland, we live in Liverpool.

  • Sandy_123
    Sandy_123 Scope Member Posts: 63,128 Championing

    Lovely pic hope your enjoying your holiday

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