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Just diagnosed with MS 3 days ago!

Hi All,

I am a British citizen living in Singapore (36yrs old) and was diagnosed with MS 2 days ago. Singapore healthcare has been pretty rubbish considering how much it has cost me to find out nothing bar what was wrong with my bladder – Detrusor sphincter dyssynergia.

After having MRI’s & CT scans in Singapore and getting fobbed off I flew to Prague where they said they could do a Lumbar Puncture for me and 3 weeks later I got my results which kind of confirmed what we already had suspected.

Since 2011 I haven’t felt right and no-one found anything until 2 days ago. From 2011 it used to go and come back every 3-6 months but since January this year it has stuck with me. I have pins and needles in my arms and legs (in particular left side), achey and painful legs and back, my bladder is of course not functioning properly (my Urologist prescribed Alpha blockers to help with that), blurred vision sometimes and generally feeling run down.

It is so frustrating as we live in a fantastic place but I just can’t enjoy it like I used to. I am knackered and in pain after doing too much. Even my achilles tendon feels very tender to touch sometimes.

I am booked now to see a specialist neurologist next Wednesday and supposedly he specialises in MS. The fact that it hasn’t left me now for nearly 7 months is quite alarming.

Being toying with the idea of flying back to the UK and seeing a specialist but I read that because I have been out of the UK since last August it is doubtful I can do this on NHS. Which in my opinion is ridiculous considering how much tax & NI I have paid over the years. My stress levels are up because healthcare here is ridiculously expensive. My son’s standard jabs as a baby cost over 300 quid! But I guess it is my problem as I have live here, just all the tests so far this year have just been draining emotionally and financially.

Anyway, I believe there isn’t too much in the way of choice out here in Singers for medication in comparison to other parts of the world. So I hope I can post on here for advice after my appointment.

Anyway, sorry for the long winded message, had to vent and share.

Richard

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Comments

  • Laura Kolaczkowski
    6 years ago

    How’s it going now? Laura and Joybo both nailed it when they wrote about how hard this can initially be. I hope you have been able to get the care you need and also straightened out the question about NHS coverage. Good luck and check in when you can.

  • Richard K author
    6 years ago

    Hi Laura, Jaybo & Larup,

    Thanks. I actually got a Switch Stick the other week to aid my stability and walking which helps.

    Blurred vision and my instability is not nice. Left leg is pounding.

    But for sure we have not accepted the situation and just are in the process of trying to sort out what we do considering we live in Singapore where there is next to no support for MS sufferers due to the rarity here. So, do we sort out going home to the UK for help. Such an upheaval and what a blow considering how we love our life out here. But the costs will be tremendous and my health is a priority.

    Thanks again

    Richard

  • Larup
    6 years ago

    Richard, You have nothing but hope from here on out. You already knew something was really wrong. Knowledge is power. Please do not spend 3 years throwing yourself a pity party, as I did. Now you can control the disease with medicine. I am 5 years diagnosed and am stable. Find a neurologist who specializes in Ms. Educate yourself and follow good advice, like saving your energy for what is most important. Yes, your life is changed forever. I is not what you had in the plans, but no one ever plans to get sick and millions of us do. Due to new therapies it surely is not the worst of times to be diagnosed with MS. I wish the best for you. Laura, Louisville KY, USA

  • Joybo
    6 years ago

    RICHARD!
    Newly diagnosed period always the most difficult… that and the fact the disease is so unpredictable. (I’ve loads of experience, 30 yrs with RRMS, age 50+ in USA.) DO KEEP appointment with MS SPECIALIST (regular “neuro” not as helpful). They will treat your symptoms if you describe them well and hopefully offer you a choice of “disease modifying drugs” depending on your physical status and medical coverage or lack of it. UK has TONS of ppl with MS; I think Canada/UK have largest population of MS patients. (In your case it may actually pay to move back to UK if only for medical care for the long tern! Very personal decision of course.)
    Good Luck with all that. It’s not curable BUT you learn to live with whatever comes up and BE GRATEFUL for all the stuff you can still do, and all the people out here available for support and chat if needed!!
    Joy, Tucker, GA, USA

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