Forum Replies Created

  • jono

    Member
    February 11, 2021 at 6:09 pm in reply to: Newly Diagnosed – Advice welcomed.

    Hi all,

    Firstly I must apologise, its taken a long time to get my head around my situation, and there have been many uncertainties and developments since 2019. An update on things if I may….

    I started on Copaxone for 6 months (until the summer 2020), In that time I didn’t experience any further issues or irritation or the symptoms of MS I previously experienced. However the copaxone didn’t agree with me at all on my skin, It was constantly bringing out irritation in my skin, to the point I stopped. I am now awaiting the pills (<b style=”color: #202124; font-family: arial, sans-serif;”>Tecfidera) which are </b><span style=”color: #202124; font-family: arial, sans-serif;”><b>imminent</b></span><b style=”color: #202124; font-family: arial, sans-serif;”>. </b>

    However in March 2020, I had a struggle with my chest, I went for a scan, and after a biopsy and a cancer scare, it was recognised I have a growth in my lung – which is an MS imitator – called Sarcoidosis! I am still being reviewed, and to be honest I think the consultants are a bit confused themselves. Finally after all sorts of tests they advised ‘they are inclined to believe I have a rare case and c0-existence of MS And Sarcoidosis, but would monitor very carefully!)

    Its been a worry, but I have not actually experienced any further symptoms of MS, I actually feel I was better in the months I didnt take any drugs, but then again, I am advised I was a borderline patient for MS, my brain scan was in alignment with MS, but I had no new lesions in 2020.

    I just wonder what the future holds, I have been promoted at work, I am still managing that ok, the only real problems I have experienced are related to my sleeping patterns, and I do feel that I have lost some sex drive, which is something thats never happened before!!).

    So to summarise, I feel I am ok, have some small tingles in arm or hand now and then, I have slurred at times, and have a light numbness in my fingertips, but thats all been there since 2019. I will make an effort more on this board, thanks for reading……..

    best.

     

  • jono

    Member
    October 13, 2019 at 4:10 pm in reply to: Newly Diagnosed – Advice welcomed.

    Hi John, thanks for this I appreciate it, I am due to go on a holiday, and then when I return, I will be meeting the MS Nurse.

    A friend mentioned Stem Cell to me – but apparently that is the last resort the Dr advised? (probably due to the cost!)

    I kind of thought I was ok, and I didn’t feel any symptoms, or attacks, since feb. the only one thing I have at the present, is lack of feeling in my fingers tips, I struggle to hold a pen at times, (ie I really have to concentrate).

    I don’t know anything about copaxone, or how long I take it for, or indeed is this my life – injecting this 3x per week for my life?

    a question for the forum if I may? how did others feel when they were diagnosed? and what did they do, life changes, diet, supplements, CBD? etc?

    Many thanks

     

     

  • jono

    Member
    October 10, 2019 at 8:47 am in reply to: Newly Diagnosed – Advice welcomed.

    Good Day all,

    Again I appreciate all of the support and comments, and I apologise for not responding, its taken so long to get progress at the hospital, a change of consultant, more scans, lumber punctures, however I am finally at a stage, where I am now advised I qualify for DMD, they want to start me on Copaxone, and yet more MRI’s I understand as a baseline.

    Im anxious about the side effects, and i’m also anxious I get another infection in the winter that will have another impact on my partial mylenation. Im anxious about having to push a needle into my body/leg 3xtimes a week, is this for the rest of my life? – and keep asking the questions to myself, around will I inevitably end up in a wheelchair, walking stick, loss of speech. I google, I youtube, and I take some inspiration, but I also read scare stories……. in saying that, no one wants this, this is the path thats been chosen, and I just have to buckle down and get on with it.

    Since Feb I have also stopped exercising, put on weight, and anxious to play golf, play sports, run, in case I get another attack, I feel like its ground hog day, every time I wrestle these feelings/thoughts on a regular basis.

    Im not the person to convey feelings, but with this I and the more I write I can open up about my inner struggle, I am scared more than I ever have been in my life, and the impact it will have on my family, my aging parents, who have had their share of health issues themselves. and then I just break at the thought this will have on my darling daughter, who really is my world.

    Or I man up attack this, do as much as possible, my Dr advised I should look to change diet and remove red meat and dairy as they are inflammatory foods.

    Or I man up and take inspiration from my grandads favourite poem – If

    thank you for listening

  • jono

    Member
    August 20, 2019 at 9:53 am in reply to: Newly Diagnosed – Advice welcomed.

    Afternoon, I do appreciate all advice, I am at hospital tomorrow, I will spend some time replying, apologies its been a difficult time…….. thank you again.

  • jono

    Member
    October 13, 2019 at 4:11 pm in reply to: Newly Diagnosed – Advice welcomed.

    Hi Nicholas, this is really inspiring thank you so much.