This topic contains 22 replies, has 5 voices, and was last updated by  J Howell 2 weeks, 1 day ago.

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  • #17813
     Jono 
    Participant

    Good day to you all,

    Firstly, I think everyone of you are strong, brave and inspirational after reading some of the topics, articles, posts on here,

    Following 6 months of unknowns – In Feb 19 –

    I was rushed into hospital following a Dr visit, as they thought I had GBS (loss of feeling and numbness in lower section), but following tests, spinal tap, it was inconclusive, and I was sent home. Since then I have had episodes – numbness and trickling down face sensation (usually after I exercise), and drop foot on one or two occasions after sitting in one location. All my checks came back ok.

    Until my brain scan – advised on lesion of c3 cord, and signals of abnormality, some periventricular – but none were brainstem or cerebellar, but the Dr concluded these are the first clinical manifestations of MS.

    I am about to venture into the unknown, my consultant, is advising on a course of disease modifying drugs, I couldn’t really understand everything he said to be honest. other then the drugs may have some adverse effects, itching, memory loss, depression etc……

    As a single father – turned 40, devoted to his 5 year old daughter, and C-Level (Director) Career, I am worried about this my life, how it will play out, my career, there are so many unknowns, I guess I am looking for answers, and asking for some support or responses to what to expect, what to change or do, what diet to follow, all advice is greatly appreciated.

    I read all about Montell Jordan’s Keto and fitness diet. Any books recommendations of medicine, and has anyone actually become symptom free, lastly but most important, the impact on my daughter.

    I have been diagnosed for 1 month now, at present all I feel is tingling, or a weakness in my fingers, and possibly tiredness. I have not had an ‘attack’ for over 2 months now.

    Thank you all for taking the time to read this, and yes admittedly I am scared, and it’s taken a month to write something……

     

  • #17814
     John Connor 
    Keymaster

    Hi Jono

    I’m John one  of the forum moderators (the other is Ed Tobias).

    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 v aggressive when it occurs later in life  I read recently (haven’t done the research) that 15% of us are destined to be in wheelchair.

    I’d tell my newly diagnosed self  to grab a DMT as early as poss. Indeed I’d push for stem cell replacement (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 & 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 will also get me another reader! (Toot-toot)

    Cheers John

     

  • #17830
     Nicholas Brown 
    Participant

    Hey Jono

    Just a quick note to sympathise. It’s a shock when you get your first attacks and the resulting diagnosis. I’m another Brit and some 40plus years into the disease. I’m now 65 and still hiking ultra marathons and climbing mountains. There have been many attacks along the way impacting walking, sight, hearing, bladder and bowel, but I’m one of the lucky ones who return to pretty much par each time – there are bits of me which are a bit crap but by and large no-one would know that I’m an MSer. Everyone’s form of MS is definitely individual so what I’m going to say works for me but may not for anyone else.

    On diagnosis I reacted by essentially blocking it out and partying extra hard. I was young so “live fast, die young” seemed to be a great mantra. Perhaps luckily I hit a fast track corporate career so had to grow up pretty quickly and the partying had to stop. I also had to look at controlling the MS so that it didn’t interrupt my career. At this period there were no DMTs available so I used steroids during the attacks and sheer force of will to keep going. There’s a lot to be said for enforcing a positive mental attitude. Once they became available I eventually went onto DMTs – my first was Avonex. Most medics, here in Britain at least, would advise going onto these early and I’d probably support that view although I’ve always previously been reluctant to use drugs on a long term basis. After 10 years I swapped onto Gilenya – pills are so much better than injections! However, I didn’t settle well on them and so stopped for 18 months (with my consultant’s sanction but against his advice). I had to go back with my tail between my legs having grown 3 new lesions and had a belter of an attack within that period! I’ve now settled on the Gilenya and since then there have been ups and downs but nothing has stopped working. So DMTs good.

    In addition, I’m a very strong supporter of exercise as an essential ingredient in managing the disease. The premise is pretty simple in that I believe if you are as fit as you can be within the limitations of the MS then your body is in the best state it can be to both resist attacks and recover from them. The corporate career had resulted in my being – how shall we say this – portly, albeit still with some level of fitness as I had always maintained some presence at the gym. In my mid 50s I decided that I had to take a more responsible attitude to my health and so got myself a personal trainer. Fortunately the 26 year old Aussie I hired back then studied MS before setting out my programme and so set to work on balance and coordination rather than a focus on body building, etc (sadly I still don’t have the figure of Adonis). 10 years on and still working with the same trainer, I know that the discipline has helped, added to which I’m a lot slimmer and fitter. I have recently arrived back from Peru where I hiked the Inca trail over 4 days.

    The upshot is that an MS diagnosis doesn’t always end in disability – that said with the knowledge that I have lived a charmed life in avoiding it so far.

    Take heart. MS is a tough call but you can manage it.

     

    • #18391
       Jono 
      Participant

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

  • #18049
     John Connor 
    Keymaster

    Hi Jono

    I turned my answer above into my column for this week

    I’m going to start it off as its own topic in the Newly Diagnosed section.

     

     

  • #18056
     John Connor 
    Keymaster

    Hi Jono – more MS’ers have written to you. You’ll find their answers in the Newly Diagnosed section. Cheers John

  • #18081
     John Connor 
    Keymaster

    So Jono if you take a look at the Newly Diagnosed Forum you’ll read another four replies.

    Let me/us know if you find any of it helpful. Cheers John

     

  • #18085
     John Connor 
    Keymaster

    And there’s one more…

  • #18103
     Jono 
    Participant

    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.

    • #18105
       Ed Tobias 
      Keymaster

      Hi Jono,

      Best of luck with your hospital visit tomorrow. I hope all goes well. Please keep in touch with us.

      Ed

      • This reply was modified 2 months, 3 weeks ago by  Ed Tobias.
  • #18111
     John Connor 
    Keymaster

    Hi Jono

    I’ve only just seen your reply – presume you’re at the hospital now or have just got back.

    We’d love to hear from you but your head’s going to be crawling with arachnids for quite a while. So although our job is to get you to engage in this web space [sorry – what am I like?] please don’t reply if you feel it’s just another chore. Last thing you should worry about,

    We’re here to support – thanking everyone is cool enough.

    Cheers John

  • #18376
     Jono 
    Participant

    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

  • #18381
     John Connor 
    Keymaster

    Hi Jono

    ‘Nobody knows anything’ was screenwriter William Golding’s [Butch Cassidy…/All the President’s Men et al] famous quote about Hollywood. But it’s pretty apt about MS. Senior neurologists have at various times claimed they’re not even sure if MS is one disease! Besides the many consultations with neurologist’s there’s also innumerable  lectures and MS events attended. So my impressions are smeared through numerous interactions. The experts know loads – it’s just still incredibly complex!

    I’ve ended up in a wheelchair so I suggest an adaption of the homily given by my first neurologist ‘Use it or lose it’. Experience has adapted this to ‘Use it, before you lose it!’ I played wheelchair tennis for five years – I even had to start the whole thing locally. So get into stuff today – don’t wait for tomorrow.

    Most MS’rs don’t deteriorate at the speed I have – another homily is ‘No two the same’. It doesn’t hurt though to not put stuff off .

    Good luck with everything – I started out thinking I’d get through it somehow. I’d also always ploughed something of my own path – you’re already streets ahead by searching for advice so early.

    Cheers John

    • This reply was modified 1 month, 1 week ago by  John Connor.
    • This reply was modified 1 month ago by  John Connor.
  • #18390
     Jono 
    Participant

    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

     

     

  • #18394
     John Connor 
    Keymaster

    Hi Jono

    Stem cell therapy comes with 1-2% risk of death!

    But if it works it freezes you were you are now. Loss of feeling in your fingertips only is something to be grateful for! The longer u leave it – the worst u’ll be.

    No one knows how fast/far progression is though.

    Stem cell treatment wasn’t around 10 years ago when I was in your position. If it had been I hope I would have fought for it.

    Copaxone I found a pain in the arse – even when I wasn’t injecting there!

    It’s actually v.mild against more aggressive therapies like Gilenya. With that though it’s just a pill a day. Which I found heavenly.

    Neurologists tend to prescribe the heavier duty stuff when the others fail.

    I do suggest you familiarize yourself with all the DMT’s. There’s research looking into early use of more aggressive treatments  here.

    Cheers John

  • #18396
     Nicholas Brown 
    Participant

    Hey Jono

    Just seen John’s reply on DMTs and would definitely reinforce getting yourself up to speed with the various DMTs. You should be pushing your consultant on why Copaxone vs other injectables like Avonex and Rebif. Look at the side effects and decide what you can live with. I was on Avonex for 10 years and had chosen to inject weekly rather than more frequently even though it was an intra muscular injection. The night of the injection I would get flu-like side effects for at least 18 hours. A bit tough but it worked for me.

    I’m interested why they are promoting Copaxone rather than Gilenya or Tecfidera, but do understand that consultants often see the beta interferons as the starting point and progression to the daily pills is often, as John pointed out, as a result the previous treatment failing.

    My advice is that you do your research and keep pushing your consultant until you are comfortable.

    Nicholas

     

  • #18457
     J Howell 
    Participant

    Jono- I hope you’re doing well. How are things now?

    Nicholas- what were the side effects you experienced with Gilenya that led you off it for a bit?

    I was just diagnosed a few weeks ago and get my monitored first dose of Gilenya next Tuesday. I’m a little nervous about the whole heart rate drop thing, but my brother has done very well with it. It’s been great for him. His MS experience was all over the place before, but he wasn’t always compliant- which is somewhat understandable, considering his aversion to injections, he wasn’t great about taking Copaxone as prescribed. Gilenya has been a godsend for him.

    So far I feel like, as MS goes, it could be much, much worse for me. I’m still keen on getting this as managed as possible as soon as possible. I don’t have time for this crap! 🙂

     

     

    • This reply was modified 3 weeks, 2 days ago by  J Howell.
    • #18459
       Nicholas Brown 
      Participant

      Hey there

      My reaction to Gilenya was that I found myself feeling as though I was “living in a cloud” – I just wasn’t as sharp as felt I should be. It wasn’t easy to describe, just that I felt somehow blunted. I talked to my consultant about it and he said the only real test to see how it was affecting me would be to come off the drug for 3 months. We agreed that I would do this and report back. When I went back I was feeling so good that I said I wanted to quit the drug full time and go completely drug free. My consultant said “that’s the wrong answer, Nicholas” but gave consent. About 18 months later I was back with my tail between my legs after the worse relapse since I had started DMTs. The consultant was very kind and refrained from saying “I told you so”. Back on the drug I am still conscious of that slightly blunted feeling at times but there are no other real side effects so I’m happy to get on with it.

      Going onto the Gilenya is an interesting exercise but nothing to be worried about. My heart rate is normally quite slow – I’m about 50bpm and lower at rest. The guys at hospital wired me up at 08.00, gave me the pill and monitored as I bleeped away. As it took effect my heart rate slowed to such an extend that the nurses came in, puzzled, and asked if I was an athlete. I wish! I got down to 39bpm and they weren’t going to let me go until I got to back up to 50bpm. However, the day unit was due to close for the evening at 20.00 and staying would mean I would need to be transferred to a ward overnight, so I negotiated my way out of there at 46bpm with assurances that I’d behave myself – not doing anything wild until at least the following day (the unit boss knows me well)!

      I’ve been back on for a couple of years now and doing well with it.

  • #18471
     J Howell 
    Participant

    Thanks Nicholas! I’m a little anxious but keen to start tomorrow. “Cog fog” is one of the most worrisome aspects of MS for me already- I write for a living, so not being able to quite find the right word is a big problem for me! I’m already worried that I’m slipping sometimes, but my colleagues assure me that I’m worrying more than I should- so far, at least.

    I’m hoping that Gilenya will put the brakes on any new lesions. As noted before, it’s done well for my brother, he’s had some lesions basically disappear even, so I’m hoping that given some respite from new lesions my body can remyelinate at least a little.

  • #18472
     John Connor 
    Keymaster

    Hi J As a fellow writer [admittedly MS has actually got me back into it!] ‘cog fog’ was pretty awful. I was trying to organise a particularly complex part of being a producer [my other job…] & felt I was doing it from the bottom of a lake…. I couldn’t even wave that I was drowning!!!

    Loved Gilenya but unfortunately it didn’t hold back my own insidious version of MS. However it will do nothing for the ‘fog’. Eventually got myself on Modafinil. It’s worked a treat.

    And had the cool side effect that my newly graduated son being aware that it was the illicit drug of choice amongst studious society.

    Cheers John

  • #18490
     J Howell 
    Participant

    Interesting…I’ve not heard of Modafinil, but I’ll look into it. At the moment the real chore is ascertaining what is actual cognitive fog, and what is normal- aside from having MS become a “thing” recently, we’ve had a ton of other things going on in our household and at work as well, I find it difficult to get to bed early enough to get a proper amount of sleep, and occasionally symptoms wake me or keep me up on top of that. My colleagues seem earnest when they tell me they haven’t noticed anything so far, but I feel it. Whether it’s because of MS or just not being helped by it is the question for me.

    If you don’t mind my asking, what kind of producing do you do, John? I do some music production on the side, mostly for my own enjoyment. The biggest irritant of this MS episode is the timing- I had just assembled myself a new instrument and started preproduction on a record I’d been putting off for years, only to have my right hand refuse to work right as I was really getting going. My abilities are slowly returning, thankfully, but it definitely derailed me for a while.

     

    Jono- how are things?

  • #18501
     John Connor 
    Keymaster

    Hi J

    I’m actually a stage comedy producer. The show is nearly 30! I’ve run it for the last 10 with MS. Now, I get significant help at the venue where the lovely doorman go into reverse & throw me into the venue!

    It’s a topical stand up show – one of the gags I got in this week was ‘A spy stole Abu Bakr al-Baghdadi’s underwear which was then DNA tested and used to prove his identity. The scientist said the sample was ‘Really good shit’!’

    I’m 62 you know……

  • #18503
     J Howell 
    Participant

    Hahahahaha! Nice.

    I have a few friends (and friends of friends, mostly) who do standup, and a few more who do stage comedy- usually drag shows built around things like the Golden Girls, etc. It takes a special kind of clever to be good enough to keep that sort of thing up for a month, much less thirty years. Bravo!

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