July 4, 2019 at 7:02 am #17813JonoParticipant
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……
July 4, 2019 at 10:38 am #17814
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)
July 7, 2019 at 10:19 am #17830Nicholas BrownParticipant
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.
August 9, 2019 at 4:28 pm #18049
I’m going to start it off as its own topic in the Newly Diagnosed section.
August 12, 2019 at 5:23 pm #18056
Hi Jono – more MS’ers have written to you. You’ll find their answers in the Newly Diagnosed section. Cheers John
August 13, 2019 at 7:52 pm #18081
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
August 14, 2019 at 8:17 pm #18085
And there’s one more…
August 20, 2019 at 9:53 am #18103JonoParticipant
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.
August 20, 2019 at 12:34 pm #18105
August 21, 2019 at 12:47 pm #18111
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.
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