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Male. Caucasian. 48 YO. New diagnosis

Hello.

I am an American currently living in Regional Australia (Victoria) & I have recently (just mid-last year) been diagnoses with MS. I injured my neck pretty badly in a stupid accident a decade ago and was experiencing tingling/numbness down my arms and shins so went in for a cranial, thoracic and spinal MRI to see if I had developed another impingement. I was reviewing the brain scans when I noticed hyperintensities that seemed off. Later, when I sat with my neurosurgeon I mentioned MS as a possible diagnosis, expecting him to assure me that wasn’t the case. Unfortunately, that wasn’t how it played out.

RRMS. Luckily for me (& by complete fluke, as seen above) it was caught early. I’ve been on Gilenya for nearly 6 mos. I have my good days and bad. Work’s been incredibly accommodating as far as adjusted hours, but daily fatigue is killing me. Even as I write this at 0945 in the morning I want nothing more than to lay my head down and pass out. But I can’t. No self pity here; it is what it is.

I am still trying to find a “good” diet. I’ve been taking Omega 3, Vitamin D(3), and Centrum supplements daily, as well as my daily anti-depressant. I am not a huge fish eater but have been trying to get over that. Baby steps, I suppose. My first follow-up MRI is scheduled for June to see if the lesions have been kept at bay. Fingers crossed.

Relationship-wise, I have been married for 20+ years and she is my rock, as I try to be hers. Physically things have “cooled down” for a myriad of reasons including time) but romantically we are still going strong.

I really don’t know what else to add. I have always been extremely healthy and this is an entirely new experience for me. I want to think I am coping with it just fine, but I have seriously considered leaving work and going on disability, which I think is ludicrous given I am not even 50 yet. I have zero motivation or interest in nearly everything/anything creative. Even the idea of going to the gym for 30 minutes seems an impossible task for me right now. So I guess I’m looking for input from others, from newly-diagnosed to those who have been living with MS for years, for guidance, support, info and whatever. What’s working for you? What do you avoid to reduce the chance of a flare-up? How do you cope at work, etc. What keeps you motivated?

Anyway, that’s my story. Apologies that it is long and so detailed, but like I said before, it’s what it is.

Cheers

Dear RLK3, Your post here details yourself and your situation but doesn’t pose any questions. I wanted therefore, just to say welcome to the MS club. I too am absolutely and utterly fatigued and finally am considering early retirement. Amongst other symptoms, for me, fatigue is most debilitating, so much so that I wish it had a different name. I am not just tired, but on complete function shut down, sadly after just one hour of teaching. My advice…be kind to yourself. Try each day to do something special. The one significant benefit from acquiring MS, is that I am kinder to myself and hopefully kinder to others too. Warmest thoughts Ali

Hi

As Patience says, welcome to the club. Since you’re looking for any tips, support & guidance, I’ll chuck out the first few things that come to mind.

In terms of diet, some people swear by cutting out things like gluten, meat and dairy. That may not work for everyone, so try & experiment. Personally I find fatty meats like lamb, pork or beef make me feel rubbish, so I’ve come them out. And anything made with white flour, like white bread or pasta, leaves me fatigued, so I avoid that too.

For other general lifestyle stuff, exercise is important. And being thankful - every day, think of 10 things you’re thankful for (who cares if it’s the same stuff!). Talk to friends about how you feel. Many people relate to the classic stages of grief - denial, anger, depression etc. So don’t be surprised if you find yourself feeling things like that, it’s just a normal part of grieving your pre-MS life. And don’t be surprised if friends and family also go through similar things. Give things time. Ask for help if you need it.

Avoid stress and avoid heat (probably tricky for you in Australia!), as they can worsen symptoms a lot.

At the end of every day or week, look back over the day or week and ask yourself what were the things that brought you life, that energised you, that nourished your soul, where you felt like ‘you’. Then ask yourself the opposite - what things de-energised you, left you drained or empty inside. If you do that regularly, you’ll probably notice many of the same recurring things cropping up. Then choose the things that energise etc, and try not to choose the things that de-energise etc. So as an example, from doing this I realised that if I spent the whole evening watching telly, I’ll feel really dissatisfied at the end of it. So if I have an evening with no plans, I know I’ll feel far better if I do things like read, exercise, journal, study, pray etc, rather than just watch telly.

Hope that all makes sense, and some of it is helpful. And ask away whenever you have any questions.

Dan

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Hi RLK3 (SOUNDS like a robot lol). I think its evening in aussie its morning in UK.

You say.

I want to think I am coping with it just fine, but I have seriously considered leaving work and going on disability, which I think is ludicrous given I am not even 50 yet. I have zero motivation or interest in nearly everything/anything creative. Even the idea of going to the gym for 30 minutes seems an impossible task for me right now. So I guess I’m looking for input from others, from newly-diagnosed to those who have been living with MS for years, for guidance, support, info and whatever. What’s working for you? What do you avoid to reduce the chance of a flare-up? How do you cope at work, etc. What keeps you motivated?

I dont have RRMS i am a PPMSer…but first thing first.

Not sure what you do for a job you sounded like you read your MRI as you wrote you noticed hyperintensities that seemed off. So not sure if your medical or whatever.

Can you not talk to your employer and ask for a consideration of your diagnoses and adjustment of time you work? I wouldnt give up work unless you really have too i would see first if you can find a way of reducing your hours or travel to work etc.

Isnt it summer in aussie? The heat plays havoc with my MS i have uthoffs syndrome, and this can make me feel like jelly and my fatigue level is horrendous when i get hot. You can find ways around this, cooling vests are very useful, cooling mist you can spray on yourself, and keeping cool in your office and home. Keeping out of the heat will help.

The gym is the least of your worries. It can wait until you are more stablised. Maybe a walk in the cool of the evening or swim will do you good. Dont push yourself.

Have a test done for food sensitivities. If your gluten sensitive for example eliminate it from your diet as it can irritate inflammatory responses as can wheat. I did and it really helps if i eat anything with it my legs burn like mad and it makes my fatigue worse. Eat really healthy cut out red meat its not good for us, eat more white meat ok fish yes but eat the rainbow. Lots of colour, peppers, tomatoes, the works, and you can add tuna, olives, chicken, pork and stuff. No PROCESSED food or sugary food, or drinks. Lots of good old honest water is good.

ALSO i noticed you are on anti depressants you know they can make you feel totally deflated and de motivated and may not be suiting you so perhaps i would readdress the ones you are on. My daughter was put on antidepressants on a highish dose and lost total interest in things. so i got her back to GP and they changed her tablets now she is back to her normal self and painting and making sculptures again. she got her mo jo back.

You have a good partner, so just enjoy her company and do calm things whilst your body is trying to heal itself. My advise is dont push yourself listen to it, pace yourself, eat healthy, keep out of the heat, talk to your employers, readdress your tablets, and then see how you get on.

I hope you find a way, but its too easy to give up once you do that is harder to go back. I made that mistake. If i knew then when i know now i would never have given up my job, i would have gone part time, as i miss it everyday and i think it might have made me feel better in myself if i had kept to those ties even if it was for a few hours a week as i miss people a lot i was a teacher of I.T, a good one, i loved my job. Now i just while away my days filling them with as much garbage as i can so that my day goes quicker lol.

No find a way hun. I think its there you just cant see it. x

Hello, welcome to the forum :slight_smile:

i have recently started following the overcoming multiple sclerosis regime. I joined the website and they sent me the book for free. It’s by a doctor who himself has MS and he has dedicated himself to this lifestyle and suffers very minimal symptoms and his disease hasn’t progressed. I know everyone’s disease is different, but it’s worth a shot hey!?

Its based on a vegan diet (with fish), supplements (vit d3 and omega 3), exercise and meditation and sunlight. I already meditate daily so I got a head start :slight_smile:

But I really recommend this book, could be life changing.

The very best of luck to you xx

Now see i bought his book i found it hard work lol. I not good at reading and i was trying to read it and in my mind all i could read was BLAH BLAH BLAH lol. I know really silly.

I am very good at my diet and look after myself. i eat tons of fish an ocean of fish lol…and white meat only. i cant really exercise but i push myself to stay on my feet as much as i can. I listen to meditation and native Indian music whilst i am writing this, i sit out side everyday for at least 20 minutes but i go out on my scooter too with my dog and find some vitimin D rays my levels are good.

I was weighed the other day and i am the same weight i was from 2000. I am 5ft 7in and weigh 11st 4lb my nurse was really proud of me. My BMI is normal. i would like to loose a bit more weight and my goal is that now. trouble is i eat so much fruit lol.

I do try a veggie diet and i know people who use his diet successfully but i would have loved a small booklet with pictures that i could have got my head round.

i got the gist and i try my best.

Perhaps you could help me loose a bit of weight as i am not sure how to go about it now. as i have maintained i know of it is water. i am up for any advise.

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Thank you all for the warm welcome and comments. It will take me a little time to go through them all. :slight_smile: And CC, no, I am not in a medical field. I am an Administrative Specialist working with local government. I just happened to see something on my MRI that raised my eyebrow so I did a little research. Fatigue… that’s my number one issue right now. Sometimes it just lingers and I can fight through it. Other times it hits me like a truck and I just shut down. Still learning to cope with that… EDIT: Ok – finally getting around to reading everyone’s responses. Again, thanks all. Patience: thank you for the welcome (and same to all). My question was around diet primarily. I love meat. Beef, pork, chicken. I am not a fan of red/pink meat fish such as salmon and salmonoids (trout, etc.) but have been trying to force myself out of my comfort zone a little and eat some. I had fresh lox on a bagel and was able to eat most of it before I couldn’t stand it any more. I also recently had lake trout, but it was Cajun-ised so the flavors were somewhat hidden. Still, it was quite nice. As I said previously, I am taking fish oil pulls as a supplement so maybe I don’t have to go out of my way to order fish all the time… hopefully. LOL I love other seafood. Crayfish, lobster, crap, white meat fish (cod, halibut, etc.). haven’t tried perch yet but I hear it’s nice. Good thing about where I live is fishing is very accessible and redfin perch seem to be prevalent everywhere. Fatigue. I hate the fatigue. It makes me feel lazy. My wife is very supportive. Just last night we were supposed to go out for a trivia night with family and I had to back out literally at the last minute to lay down. I felt bad about it because I knew she was eager to go. She was lovely about it tho. As for work, they have been accommodating so far, reducing my hours, etc. but I realize there is only so much they can do before I become a liability. I’ve already considered looking into full disability but if I can stick around for 1 more year I get long service leave so I might try to push to that. I am fortunate that I don’t have many physical symptoms (other than listing to one side as I walk) but that is a double-edged sword, too. Because I usually look and function normally, I constantly have this feeling that people don’t believe fatigue is so debilitating. “He’s just tired” or “Just had a late night” are some comments that run through my head – not that anyone has actually said that to me, but I can’t always hear what’s being said behind my back. The worst part is being tired all freaking day but when I go home I can’t sleep. I’d take meds for sleep but then I can’t get up in the morning. It’s a deep pit I can’t seem to find a way to climb out from. He_Funk: I do try to be tankful. For the support of my wife, the fact that we caught it early on, for my friends and family (although I haven’t told my father yet. He’s 80 and we lost my mom earlier this year. I’ve been keeping it from him because I don’t want him to worry about me when he has so much else going on already.) I’m thankful that I don’t have truly debilitating symptoms, such as vocal spasms and that I can walk unassisted for now. The fear that this may be something down the line, however, is terrifying. I want to exercise. At least walk, for starters. We have a local lake with a 6km walking path and I have started walking it with my brother in law. I also have an 8kg kettle ball I try to use on non-walking days, but more often than not I am so tired, the thought of doing anything physical seems completely impossible. Crazy Chick: I hadn’t thought of being tested for food sensitivities. That’s a great idea and I’ll definitely ask my neurosurgeon about it on our 6 mo check-up in July. Thanks for that. I’ve never dealt well with the heat. I grew up in Alaska and have always preferred the cold. I remember going to sleep in wintery nights with my head against the window, lavishing in the cold air. The heat here sucks, and it’s not even the hottest part of Australia. Still, we had a few 40c degree days (about 105f) and I. AM. MISERABLE. Winter here isn’t much better… it’s cooler but usually rainy and wet. From one extreme to the other. Give me a dry cold any day. I can cut //down// on red meat but I can’t cut it out completely. I love the taste and texture too much. Lol Antidepressants. Maybe… my dosage is low (50mg Eleva daily) but I’ll note this down as another thing to talk to my Dr about when I see him in July. That is another thing that hadn’t occurred to me. Thanks again for that tidbit. LisaC: I’m sorry – I think I may have missed the title of this book. Can you share? Vegan…. I know it’s healthy but I don’t think it’s for me (see above: red meat). If it were a matter of life and death I would be able to slave through it, but I’d be a miserable bastard, that’s for sure. LOL Ya, I take D3, Omega3 and Centrum 50+ (might as well start early, no?) daily. I do try to walk out in the sun when I can but don’t always get the chance. I know the vit D is important as. Again, thanks all for the feedback so far. I genuinely appreciate it. This is all still very new to me. I was always healthy as a kid. Have never broken a bone or had any serious illness growing up. I was in the US Army Reserves and loved being active and fit. In the past 20 years or so, however, I have slipped into being sedentary and, in my opinion, fat. 6’1” and 110kg (242 lbs). I hide it well, physically, but am far roe comfortable at about 90kg (200lbs). You’d think 20kg wouldn’t be that hard to shake off, but when you can barely motivate yourself to get up in the morning, let alone exercise, that small amount might as well be a metric tonne. I do try to eat healthy. I avoid most candies and sugary sweets (even stopped having sugar in my coffee). I eat salads, veggies and white meat more than red, and in lower portions. Sure, I sometimes get a fit of the ‘munchies’ where I can’t stop eating, but even then I’ll try to eat fruits like bananas, avocadoes, apples. Occasionally I’ll have to haul into a big bowl of cereal, tho. High fibre, of course. I guess one step at a time. Take it day by day. Even as I write this I am feeling myself nodding off and will probably leave work early to go home and sleep. Which sucks.

Great post i feel i know you a bit better now. I just knew you were highly intelligent and some how came across medical but hey google is our friend is it not. (Although when i taught it someone asked me how to find out about Beano comics (old), so we put Beano into the search engine at the time and i wont errr tell you what came up lol…thankfully there are better filters now lol).

Anywoo you wrote.

I guess one step at a time. Take it day by day. Even as I write this I am feeling myself nodding off and will probably leave work early to go home and sleep. Which sucks.

Years ago when this started, so between 2000 and 2006 lots of things went on unexplained. One of them was me so tired i could barely function at work. Meetings i would find myself nodding off, and getting pins and needles in my legs. I was an IT. tutor but also a manager developing all the accreditations in 11 centres for a local college. I was in charge of 54 tutors. My job was ace i loved it. I was non stop driving, meetings, working. I was allowed to work at home and i found myself doing that more and more.

My PA would find me around 3pm asleep in my office. I have never done that in all my life i cant even do it now. But the heat in the office was just draining sucking the life out of me. I have no recollection of falling asleep would just wake up being gently shaken awake. Perhaps your where i was now. I had no air conditioning in the UK what is that lol. The window didn’t open, so i had a small fan. We did take the temperature in my room and it was ridiculous. I refused in the end to stay in there and that is when i went home to finish off my work which was mostly administrative anyway.

Perhaps your office is too warm for you? Even a shower now hun, wipes me out TWO DAYS.

LOOSING WEIGHT.

I am proud to say since 2000 i have not put weight on, have stayed the same. Partly i think it was having my allergy test done. I know for example if i eat gluten now i swell. I seem to get swollen hands and my feet puffy. So like you with your red meat i do try to limit it. I am half Italian and not eating pasta is like murder for me. I know i was naughty yesterday i had a double whammy, LASAGNE. gluten and red meat. = result = massive tingly legs and burning on both sides. Was it all worth it to eat the forbidden fruit lol, you BETCHA lol, the sensory stuff will hopefully calm down. But it was delicious.

Anyway I have worked out my calories now. I am more sedentary so i eat less calories, and chucked out my dinner plate, and have smaller portions.

The trick too is you must have breakfast and 3 meals a day. I find food makes me fatigued if i eat a bigger meal it kind of wipes me out. It also increases our core temperature which makes us fatigued as our body processes it. Any rise in core temp for us = fatigue. So i eat 3 small meals a day and lots of water with it. I never get tired now in the afternoon not sleepy tired, yes i get fatigue but the type of fatigue you get when a battery is winding down, i loose my energy so i always rest in the afternoon, and i go to bed early. I am now on my own so it doesn’t affect anyone but me. Some of my friends just have to sleep since i left work and got myself into my routine i never fall asleep in the day, but wiped out by 6pm, and asleep usually by 7.30.

HEAT is the worse thing for us, it will wipe us out, melt us into jelly blob.

I watch what i eat, i love fish and i can live without red meat lol…switch? My husband loved red meat and hated fish he said it tasted like metal… but he loved fish and chips (in batter the fish). I used to make beer batter, and he would eat a nice piece of cod covered in that, anything with alcohol in it lol. bless him.

There are meds to help MS fatigue. Some people swear by them. I don’t take any meds for my MS with PPMS its just a case of dealing with the stuff that comes with it. I have learnt what i can and cant do with it now.

I try to walk a tiny bit every day, and do a few things. But i haven’t put weight on still the same from 2000 i am so pleased with myself. I eat a ton of strawberry and blueberry, love them, well i am careful as they are high in sugar but have some good stuff in them especially blueberries. I eat grapefruit for breakfast, and clementines as well. In the UK its advisable to keep up our vit C with the cold air and well this year we have been hit hard with a nasty virus. So i try to protect myself as much as I can.

Your in a difficult position at the moment transition. You want to work still and live as normal life you can, so you have to adjust some of the stuff around you to have the energy to do so. If you are planning to go out again, if you can have a nap earlier before you go out. i do that if i am going out at night i will try and have a nap in the afternoon not always able but i try.

Hidden depression can cause fatigue too. Just fighting the disease is exhausting. I asked my neuro why is it when i walk outside my home i get so tired my balance goes and i have fallen many times. He said its because your brain has to keep you safe as your in an environment it doesn’t know, when your at home it knows so you are less tired getting around familiar places. He didn’t say it quite like that but that is the gist of it, and it makes sense. Our brain exhausts us trying to deal with our normal life.

I know when i have really bad MS fatigue it feels like the worse flu without the temperature. I just melt into the recliner and can barely move even for the loo. But i am not sleepy tired.

Have you been checked for all the vitamins, B12, magnesium and Vitamin D?

Anyway i have blabbed on as i do, i am tired as my spelling is deteriorating lol thank god for auto spell. That was another one of my weird symptoms. I would write exercise books for Microsoft products for my students and read it back it wouldn’t make no sense lol. my spelling well i became dyslexic still am to be honest.

I hope you have a better day.

Enjoy your red meat there is no proof diet makes any difference, wellbeing and happiness make the difference and if a slice of red meat on the barby makes you smile like my lasagne then go for it.

This is a good article about fatigue maybe you should print it off.

Heh - thanks for that. Heat is definitely a problem. Especially here at the moment (hottest on record this year. yay me.) I have read so many articles on fighting fatigue, etc. but think you’re right; it’s a transition and will take time for my body/brain to adjust. The newest thing (literally just started happening) are limb spasms when I am trying to sleep. It’s not good enough that I have ‘restless legs/arms’ but now a leg or arm will suddenly thrust outward as if I was just yanked by some pissed off entity. Luckily for my wife, it’s only happened when I am facing away from her. the time will come when I whack her, tho. I know it… Spelling - I hadn’t even thought that might be attributed to my MS> I just thought I had late-term dyslexia or something. Without spell check I’d probably be writing in some foreign language right now. Jibberese or something. Lasagna… love it. Wife makes eggplant sometimes instead of pasta. As long as you peel the eggplant first it’s ok, but a little chewy. I think the next time we make it I might fry up the slices in a little olive oil or something to give it a crisper crunch. Mmmm.

Oh not not spasms. Have you had your magnesium checked oh and sodium levels. if your hot you might be drinking more well doh we usually do, and if your a healthy person might be salt counter (no pun intended lol). Your sodium might be a bit low. on my last blood tests mine was borderline and i was ordered to use more salt lol…

and magesium low can cause restless legs and spasms.

gosh your poor wife i hope you dont do that lol she will have to wear protective gear in bed lol.

Yep that is perfect Jibberese i love it, i talk and right fluent jibberese lol.

Lasagne is just drooly. Mum was italian and she would make all her own pasta. Her lasagne was just drooly. I miss it no other comes close.

nice idea with egg plant though but turns it into a beef moussaka?

I hope you have a decent weekend. My brother lives in queensland been there years and years in Monto. He said it was very hot there even he is finding it uncomfortable and he is kind of a jungle man lol used to every element aussie has chucked at him. but this year he said its a bad one.

x