An Open Letter to a Newly Diagnosed Patient

An Open Letter to a Newly Diagnosed Patient

I’ve been a co-moderator on the MS News Today Forums for a couple of months now and recently wrote a reply to a newly diagnosed patient, Jono. He’s only had MS for a month. I found myself writing what I wished I’d known when I was diagnosed.

Now, I’m well aware that you all don’t pore over the forums, so in the spirit of cross-pollination, I thought I’d share the post here today. If you’ve read my column before, I hope I’ve built up enough goodwill that you might at least sneak a peek at the MS forums. If you’ve read me and hate me — well, you won’t have gotten this far anyway!

Hi Jono

What follows is strictly my view. I wish I’d had the sense when I was finally diagnosed to write to someone about it. This is very much what I’d wished I’d known then.

I was 51 (am now 61). Had been hit by a sclerosis a couple of years before but it hadn’t developed into MS: unfortunately it did.

I’m British & the policy back then was to only give DMT’s (Disease Modifying Therapies) after a number of relapses (this has now changed thankfully).

Am now in a wheelchair- it seems MS is often very aggressive when it occurs later in life. Though thankfully the majority of people with MS don’t end up in a wheelchair

I’d tell my newly diagnosed self to grab a DMT as early as possible. Indeed I’d push for stem cell replacement therapy (comes with 1-2% risk of death mind). By the time I could have got it my MS had already progressed to where it would no longer work. It doesn’t fix you but it freezes you where you now are. MS is a progressive disease so grabbing what you can whilst you can is eminently preferable.

Good luck Jono – this disease is incredibly complex and new things keep popping up even when you’re something of an old lag like me.

MS is different for everybody but I’ve written a column here for 2 years (Fall Down, Get Up Again) which might give an insight of what may happen to you. It might also get me another reader! (Toot-toot)

Best John

Continuing in the vein of the forums, please tell me anything that you would add to this letter in the comments below. I’ll then add them to the correspondence to Jono in the hope that some of it helps. I know I should be encouraging you to do it yourself, but we both know that ain’t gonna happen. Sign off with your name and I’ll make sure you get a byline.

Now that will make you want to have a look.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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John Connor BNS Writer
‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.

8 comments

  1. Lizann Reitmeier says:

    These are good tips John. As a second generation MSer, I watched my dad do battle in a time before drugs. He could still (kind of) walk when he passed away at 75 from cancer. He was an inspiration to many. From my parents I learned the importance of staying positive, staying active and eating a relatively healthy diet. I believe these are the foundations to success. And don’t smoke. I have been fortunate to have been successful with this approach since my diagnosis 28 years ago.
    As the child of a parent with MS, I would add don’t worry about the little things. Your kids will still learn to catch a ball, even if you can’t teach them, and they will grow up with an understanding and compassion that will far exceed that of their peers.

  2. Maureen Friedman says:

    Hi Jono,
    When I was first diagnosed I felt relief at first because I knew what I was up against. It took longer than 2 years to diagnose me with Primary Progressive MS. I listened intently to my doctors’ advice for treatment options. (This is in 2007). Back then there was no DMT’s (disease modifying drugs)for PPMS. But now there are quite a few. Your choices are many now.
    What would I do differently if I were diagnosed now?
    Become or stay active: swim, yoga, walking etc., depending on your ability level. Keep a structured diary so you can get an idea of what is changing as time goes on.
    Think outside the box: I changed my diet 5 years ago and it’s made a huge difference in my progression keeping it stable. I wished I had done that sooner. Now I eat Paleo/autoimmune diet. Attitude also plays a major role with MS. It’s easy to feel sorry for yourself but I learned as time went on that I was my own best advocate. Surround yourself with positive people. I am blessed with a close family and friends to lean on when I need help. Don’t let pride keep you from asking for the help you need.
    Listen to your body. As John says everyone with MS is different.

    • Melissa Cash-Tenorio says:

      This is only my opinion or like the way that I see things. First of all, one has to put the stigma of actually being diagnosed with or labeled with something in the back of their mind and once you do that, just remember your appointments and keep enjoying life to the fullest every day. Don’t change your routines, keep everything as normal as possible because you need to decide and only you can decide this. If you are going to beat it or will it beat you? You are still who you are no matter what people say. Yet once you let everyone in on the diagnosis you will be very surprised at how many people will act like you have the plague. That’s why the fewer people know the better off you are. Some will throw you sympathy parties and circle around you as if you were extremely ill. Don’t let them get into your head, only you stay in your head. That’s enough, don’t let them rent space in your head.

      • Erin Franco says:

        I’ve been very open about my diagnosis. (It’s the easiest way to explain the cane😂) Maybe it’s just the mentality of the people here in the Texas Hill Country or that I’m a bit of a loaner, but I have found the responses refreshing… not scared or overbearing, but supportive in a very reserved fashion.
        I think often times we need to use discernment in these sorts of things like when I kept my battle with Iberian cancer mostly to myself, but if we have more visible symptoms we are somehow graced with the most appropriate response. I’m sorry that you weren’t

  3. Julia Farris says:

    Dear Jono,
    Assuming you have been diagnosed with RRMS in the U.S., here’s what I’m glad I DID do after 19 years dx:
    1. I found the best MS clinic and doctor I could find. Not just a general neurologist, mind, but an MS CLINIC peopled with doctors and nurses who know and understand Multiple Sclerosis. It has made a world of difference!
    2. Educate, educate, educate! Go into your check-ups knowing as much if not more than the doctor. You are your own best advocate. I never take my neuro’s word for something without researching it first. There have been several things he has offered that after research, I said, “not for me.” Also research clinical trials that your clinic/doctor may be or get involved in.
    3. Stay active, even when it’s hard. The longer you keep moving, the longer the nerve conduction lasts. Swim, walk, bike, whatever floats your boat – like the commercial says – “just DO IT!”

  4. Dayna says:

    Hi Jono,

    Keep moving, take supplements – Hemp Oil, vitamin D, B complex, CoQ10, fish oil, flaxseed oil, iron! Keep reading, the neurologists don’t like to hear about anything except a DMT, but these will be good for you. Have faith!

  5. Kevin Keplinger says:

    The best thing that anyone call tell a newly diagnosed patient is to tell them about HSCT!! Knowing what I know now after fighting MS for 13 years, going through antibiotics, bee stings, FDA trial participant, taking a DMT, & being treated for Lyme’s Disease, I wish that I had gone right for HSCT the day that I was diagnosed & would have had I known about it!! HSCT could be helping so many people that it is outrageous that the MS community isn’t being informed about it & that it isn’t available to all!! We need HSCT & we need it now!!

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