Newly Diagnosed – Advice welcomed.

[John Connor]

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

 

[ed-tobias]

Hi Jono,

Let me add my view to John’s.

I was diagnosed in 1980 at age 32. Over four decades my MS has progressed from just being an inconvenience to getting around using two canes or a scooter. When I was diagnosed I was working as a manager in the broadcast news profession…every bit as stressful as working in the C-suite, I suspect. I continued to work full-time until retiring at the end of 2012…traveling over most of the U.S. and to about 20 countries in four continents.

When I was diagnosed there were NO disease-modifying therapies. Now there are more than 20. I’ve been treated with four of them and I think each has helped to slow my MS progression.

I don’t usually do this but in your case (and also that of a woman who just joined the forums who hasn’t yet been diagnosed) I’m going to shamelessly promote a book I published a few months ago. It’s designed for MS newbies and called We’re Not Drunk, We Have MS. It’s available in paperback on Amazon and as an e-book at several e-book stores. Another good book is Multiple Sclerosis for Dummies. I hope one, or both, of these will be useful.

One more thing, I believe that rather than hiding from the storm it’s best to learn to dance in the rain. I hope you will, too.

Ed

[Nicholas Brown]

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.

 

[Jono]

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

[John Connor]

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.

 

 

[John Connor]

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

[John Connor]

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

 

[John Connor]

And there’s one more…

[Jono]

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.

[ed-tobias]

Hi Jono,

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

Ed

[John Connor]

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

[Jono]

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

[John Connor]

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

[Jono]

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

 

 

[John Connor]

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

[Nicholas Brown]

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

 

[J Howell]

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! 🙂

 

 

[Nicholas Brown]

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.

[J Howell]

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.

[John Connor]

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

[J Howell]

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?

[John Connor]

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……

[J Howell]

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!

[Jono]

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.