Not feeling good

Hi everybody, this is my first post and I’m not feeling too good at the moment, emotionally and physically.

I have some good friends and family I can talk to but thought it might be good for me to talk to people who may understand more what I’m going through. I am a 38 year old male and was diagnosed with RRMS just over 2 years ago.

My first symptoms were numbness in the left side of the face and double vision, also on the left side, though my MS doctor says my vision problems (which are quite mild) are not linked to my MS because there is no damage to the optic nerve. Other than this I have been in pretty good health since my diagnosis, a bit of a problem with achy legs now and again but I have a very physical job which requires me to walk long distances so I just put it down to that. I have been with my wife for 10 years and married for 5.

2 weeks ago she told me it wasn’t working and left to go and live with her parents saying it wasn’t over but she needed some time apart, but I don’t think she’s coming back. We haven’t been getting on as well as we have in the past but this came as a big shock, and I miss her terribly.

Since then I have pretty much been on a downward spiral. I feel anxious and stressed all the time and cannot sleep properly. About a month ago I started cutting out a lot of foods that are supposed to be bad for MS and lost about half a stone in weight which I didn’t need to lose.

Since my wife left I have lost a further stone and feel incredibly weak and am getting muscle spasms especially in my legs. I am finding it difficult to know what I can and can’t eat as any research I do is very contradictory. I don’t know if my symptoms are the MS, my diet, my feelings of stress and anxiety or a combination of all three.

I have my dog with me who I love to bits, but feel so alone and am terrified I will be alone for the rest of my life because no one will accept me with my condition. Thanks for taking the time to read my post. Steve.

hi steve

so sorry to hear what a bad time you are having.

i’ll start with the thing i have experienced - so called ms diets.

i read a lot of stuff online about diets.

the best bet diet was one i tried.

the science behind it made sense to me but it required me cutting wheat, dairy and a ton of other stuff.

i cannot stand gluten free bread so i didnt eat any at all.

ditto with dairy substitute.

mackerel was recommended and although i had always eaten it, suddenly it made me gag.

i became despondent and felt a failure.

my 22 year old son told me to eat a proper meal because i was losing weight and becoming really weak.

he offered to go to the chippy for me and i didnt refuse!

so just eat as healthily as you can and stop worrying about your diet.

spasms in your legs are horrible but there is medication for this (baclofen)although this didn’t suit me.

sativex is very good for spasms but it is not available everywhere.

magnesium helps and it’s available as an oil which you can rub in - a lot of meds and supplements are more effective if absorbed through the skin.

as you say, your wife says she hasn’t gone for good but who knows if you will still want her.

it’s not the case that nobody will want you with ms.

many people on these forums have been in your situation but have ended up meeting someone new and being very happy.

meanwhile have a good square meal, look up your old mates and start to socialise and don’t despair!!!

take care, you will not only survive but you will be stronger for it.

if you are still feeling emotionally messed up, try mindfulness meditation (fab).

if there is an ms therapy centre near you, try going - they are brilliant places, upbeat and friendly. offering great therapies such as hyper barric oxygen therapy ( breathing pure oxygen through a mask in a compression chamber) and many others.

usually these places are on the outskirts of cities.

please don’t spiral into depression

carole x

1 Like

Oh dear so sorry to read your issues, although please dont take this the wrong way, block text is very hard to read as all the words jumble up for me but i will try and answer as well as I can.

It seems that if your MS hasnt been a real issue i take it then your wife of 5 years didnt leave you because of your MS? You seem to have lived a healthy active life until all this happened.

OK the one big factor with MS is STRESS, not diet. If you are stressed it will kick your MS off big time, so this is why you feel so rank all the time. Tired, achy (like the worse flu?), irritable, anxious, nauseous, feel difficulty in breathing like your going to suffocate, fatigue like you have hit the worse wall full on… MS exacerbation will hit you like a ton of bricks.

Not only that, your screwing with your system. You need to be healthy and eat well if your walking so much, so you need lots of stamina and carbs etc. Some of these MS diets cut out way too many carbs and your body will not have the energy it needs to cope.

So chuck the diet out of the window now, and just get back on a level you were at. If you dont need to loose weight DONT, its way to dangerous. Being underweight is as bad for you as over. Go buy some bananas you are probably lacking in potassium and magnesium right now.

I would start with a good healthy breakfast to kick start your day. Eat a proper lunch, and then dinner, but in between drink lots of water.

To be healthy all you have to do is cut out processed rubbish, and high sugary food. I eat normal but never eat processed.

Dont deny your body what it needs as this will cause a total imbalance which will make you feel even worse.

I would get yourself back on track with your health to where you were BEFORE your wife moved out, then start communications with her, or even do that anyway.

You must carry on talking to her, and find out why she left for example, i mean perhaps you were distant with her, or self absorbed, or just being a man lol, taking her for granted (sorry guys yes I know boo hiss), but men in general do that lol. Women need to feel loved, and reassured, and yes we are hard work we like simple things, just an acknowledgement we are alive is good lol… We like to feel special, our needs dont have to be expensive either, although a nice bunch of flowers or choccies now and then can go a long way (oh and yes I know us ladies do have the unfortunate habit of thinking flowers/choccies = a gift given in guilt lol), but well you get the gist.

Usually a women will put up with a huge amount of stuff before walking away from security, so think back how was your marriage, and then start to try and repair it, or accept it could be over.

In the meantime, EAT, but dont go silly as if you start to really shove food in yourself now your system will just go into overdrive and make you feel even worse, so just do it slowly and gently.

I hope you feel better soon. Life is hard, but we can make it a lot easier for ourselves, with just simple adjustments. HUGS. xx


Hi Steve

I personally don’t see much point of a diet that’s making you lose too much weight and essentially doing the reverse of what you are using it for.

If you’re not having a bad time particularly with your MS, then why start a diet that’s supposedly good for MS? You haven’t said whether you’re on a DMD, I reckon being on a good DMD that suits you and your lifestyle is of more value than a change of diet. So listen to what Crazychick says and get yourself eating enough to support your physical job. Taking useful vitamins is a good idea for everyone with MS (especially vitamin D, but possibly also vitamin B12 and maybe the other B vitamins, I also take calcium and magnesium).

With regard to your wife, you said she wanted a break for a while but you don’t think she’s coming back. Have you asked her? If you still love her, why not see if you can perhaps go out on a ‘date’, or just out for a meal, a drink, a picnic even. Or get tickets for maybe a gig if you both like the music of someone particular? Think about what attracted you to each other in the beginning and see if maybe there is still something there that you can build on.

Maybe you both need some time to think about your relationship and whether there’s a future together. I know you’ve never had the option whether you want to live with MS, but you might find that it’s a decision she needed to make herself, ie does she want a future with a man who has MS.

And if she doesn’t want you, or if the MS is a factor in her decision, then it’s better to know now than to find out later. You may think that at the age of 38 with a diagnosis of MS that you’ll never find anyone else, but that’s really not true. You are only 2 years into your diagnosis, given the drug therapies that exist today, you may never develop serious disability. Plenty of women will not be put off a man because of MS.

Stay well, eat healthily, keep as fit as you possibly can and get on a DMD if you’re not already. Find out if she still wants you, even more important, decide for yourself if you still want a life with her.

And stay positive, having MS is not the end of a productive and happy life. You can still have a good relationship even with MS.



EDIT- so sorry I’ve just previewed this before I sent it and although I left spaces when writing it, it’s not put them in on the post. I’m using my phone to write so it must be something to do with that. I haven’t a computer but ill try it on the playstation next time I post. I hope it’s not too difficult to read-EDIT

Thankyou all so much for your kind words and advice. Sorry about the block text, I’ll make sure I leave spaces from now on!

Everything you all said about diet makes a lot of sense, what’s the point of a diet if it’s making me ill. I have now returned to a more normal healthy diet, just cut out the junk. Im going to weigh myself every third morning to see if im putting the weight back on. Im still a tad unsure about gluten and dairy though, what are your thoughts on these two? I do miss proper bread and milk/cheese.

About a month ago, the night before her birthday me and my wife had a big row. I really can’t remember how it started but we had been bickering for a while. She told me that I never showed her any affection anymore and she felt neglected. I was smoking a lot of weed at the time, which I have quit since she left. She said I never wanted to do anything anymore, like it was living with a zombie.

I went into another room to let us both cool off and went back to see her after about half an hour to try and make it up with her. But she didn’t want to. I was working the next day (her birthday), and we had planned to spend the evening together. She rang me at work saying she was sorry about arguing and still wanted to go out if I did. I said I was sorry too and that I would still like to go out. She texted me about an hour later and said she had decided to go round to her friends house instead. Being stubborn idiot I just texted back ‘ok hope you have a nice time’ I think she was also annoyed because she knew I had not planned anything special for her birthday.

We have always had a marriage where we didn’t spend all our time together. We had our own interests and if either of us wanted to do something without the other it wasnt an issue. This worked well at first but over the last year or so this became more frequent and looking back now we were drifting apart. Although when we did spend time together it was still good.

The next two weeks after her birthday she was out more than she was home. Thats when she came home one night and told me it wasn’t working and she was moving out. She said she was unhappy, and had been for a while and needed some space to think about what she wanted. I tried to convince her to stay but her mind was made up. Two days later she left. there was no arguing or shouting and we left it on reasonably good terms. The reason I dont think shes coming back is because we also seperated about 3 years ago and she said if we broke up again she couldnt go back.

Since my diagnosis I have not thought about the impact it must have had on her as well. Her dad was diagnosed with PPMS 6 years ago and is now in a wheelchair. She said she could remember as a child her dad having trouble with his ankles. About 4 months ago my legs were aching, nothing major but it was affecting my work (im a postman btw). My boss told me I needed to see my doctor who prescribed me steroids and recommended I take two weeks off work because of potential side effects-something about them lowering the immune system. I took the two weeks off and the steroids ended up making me quite ill.

So I’m not sure if my MS has had a bearing on her decision to leave, after what happened to her dad it must be on her mind. A week after she left i wrote a letter saying how sorry I was for neglecting her and told her I would change if she gave me a chance again. I listed all the mistakes I’d made and what I could do to make things right. I now kind of regret sending it, I’m not sure if it came across as a bit desperate and might not have been a good move to remind her of why she left in the first place. She just texted me to say she had received the letter and that she needed some time. This is the only contact we’ve had since she left.

I had a mri scan a month ago, the first since I was diagnosed. I haven’t received the results yet and am dreading it. I carried on smoking after the diagnosis and stupidly only realised recently that this can speed things up. Sue, are DMDs decease modifying drugs? If so no i am not on any. My doctor told me I have to have 2 relapses in a 2 year period to qualify. I’m not even sure what counts as a relapse.

Thanks again for all your help, and I’m sorry it’s taken a while for me to post. I’m using my phone to write and it’s all a bit fiddly.

Steve x

1 Like

Hi Steve

Yes DMDs are disease modifying drugs. Have a look at the MS Trust info on them to learn a bit more, normally, if a person with relapsing remitting MS wants to go on a DMD, their neurologist will get them on one. MS Decisions | MS Trust

It’s impossible to know whether you’ve said too much in your letter to your wife, or whether her experience with her father has coloured her feelings about you (it’s a bit difficult to imagine that it wouldn’t play some part though).

If you’ve cut down on the smoking or stopped altogether, this might be for the best, although plenty of people would disagree since many people see canabis as having a positive effect for pain relief particularly. But again, her feelings on the matter may have affected her decision.

It seems to me that all you can do is give her a couple of weeks and then try talking again.

All the best


1 Like

Hi Steve thanks for sharing this it must have been difficult but you seem to have assessed for yourself what has gone on, just sometimes writing things down puts everything into perspective.

I think for now, you need to concentrate on yourself and get better and more stable with your health.

Gluten and dairy, well nearly all the diets i read about it, say no to both, BOTH, its almost impossible to police, so what i do is i cut down the main areas of it. Cereal, bread, cake etc, and dairy i love coconut milk, or almond milk which actually is so good for us as its full of B12 and Ds which we need.

Smoking actually destroys, all the good vitimins whether its in a reefer or not, it does. So no smoking. Cannabis can be taken by other means for medical reasons, you can get sativax i think its called which is now a drug centred on cannabis.

Cannabis does dull your brain, i have a few people i know who take it regular and they seem to me to always be up with the fairys lol, and have no interests in anything, whether that is just their normal behaviour i have no idea lol.

You have a good healthy job and hopefully if you get on DMD you will have slow progression.

My advice to you with your wife is keep the lines of communications open, but as friends, just ask how she is, does she need anything, just general chit chat, but i think perhaps that ship may have sailed. My husband and I have our own hobbies but we never went out without each other. I think its cool to do that now and then as people do need space, but once the going out on ones own far outweighs the going out together its a recipe for disaster I think personally.

You sound a lovely caring person who has taken on board the issues and hopefully you will learn by them, and move forward. MS doesnt stop you having a loving relationship. I know several people now who met through MS and married and have even had children since.

Again thank you for sharing, i think you will be fine, i just feel it, its onwards and upwards. x

1 Like

Thank you again for all your advice:-) this seems like such a lovely community and I am so glad to have found it and become part of it. I think it’s wise to get myself in a better place first then make some sort of contact as a friend. I’m still struggling with anxiety, can’t seem to ever sleep properly. My heart races and find it hard to stop myself thinking about the future. Carole, I’ve downloaded a mindfulness meditation app on my phone, it’s gets very good reviews so ill try that tonight and hopefully it’ll help with the sleep. I’m seeing my on Monday but I’m not sure what to do if he offers me anxiety pills or anti depressants. I know someone who went on anti depressants a while back and they really didn’t help, just made him worse. Sorry to keep banging on about diet, but just got a few questions. If I’ve given up bread and cereal, can anyone recommend a really good breakfast to set me up for the day? Do oats have gluten them? If not would porridge be ok? What are some good healthy foods to increase weight? At the moment the main things I’m eating chicken, nuts, salmon, potatoes, lots of fruit and veg, dried fruits, gluten free pasta, almond milk (which I’m not keen on but drink it for the calcium). Crazy Chick, coconut milk sounds interesting, think I’ll give that a go. Does anyone eat quorn or any other replacement meat? I eat all this and I’ve still not put on any weight. Thankyou all again Steve x

1 Like

Sorry my post has been put into block text again! Really don’t know what’s going on, they even changed my first post into one with spaces. :~/

1 Like

Morning Steve, ah breakfast my favorite meal of the day. I threw out convention and i eat what i fancy for mine.

OK cereal, you need to buy gluten free porridge or oats. I find Tesco has a good range, but i dont start with cereal myself.

I buy Burgen or Genius free from bread its the best. I like the Burgen with Linseed which is very good for us.

You can buy potato cakes gluten free lovely fried gently with bacon, mushrooms egg on top.

Gluten free flour (Dove).

OK you can make loads of things for breakfast.

Omelette… fill it with bacon, ham, spinach, or fried potato, tomato, red peppers whatever you fancy even left over veggies.

Pancakes. Make your own with gluten free flour (or buy a gluten free mix), and fill with loads of lovely fruit, honey, whatever takes your fancy, and you can have it with a dairy free yoghurt, or if your not bothered about going full dairy free, greek yoghurt is nice.

What about mushrooms on toast (I buy a tin of sliced and warm them up and put on toast, you can add egg, spinach whatever you fancy. Poached egg on toast, what about eggy bread, fried egg on toast, or if you have a sandwich maker you can make yourself a hot toasted sandwich fill it with what you like.

Eggs are so good for you, the sky is the limit there.

Oh i love avocado on toast (yes i said avocado lol), its very healthy although fat it is good fat. You need good fat.

You need to eat at least twice a week, sardines, or tuna, yes i eat that on toast too lol. Omega 3 and 6 is essential for us.

I always finish my breakfast with a bowl of fresh fruit and coconut milk you can buy it one is called Koko the other is Alpro. I like the Koko you can get it long life or fresh. Its not cheap though, but it is really healthy. It is full of stuff we need.

To put weight on is way harder then to take it off.

Oh dont forget the humble banana, its very good for you.

Go for high glycemic foods that take longer to go through your system so you dont crave the snack. If you want to snack buy NAKD snack bars they are gluten free and pure fruit and nut yummy, my favorite is called Bakewell tart its delish.

Dont forget you can buy gluten free pitta bread, so you could eat one for lunch, fill it with cooked chicken, or sardines, salmon, lots of salad stuff. Very healthy and pitta is high glycemic.

For dinner, lots of fresh veg with rice, casseroles or curries or gluten free pasta, make your own sauces (you have the gluten free flour so you can make a basic white sauce, and add what you like). I eat a lot of sweet potato, either mashed (you can buy it now frozen), or baked potatoes with fish or tuna.

Going dairy free is not necessary if you substitute just the milk its a start. I tried dairy free cheese its disgusting lol.

Day 1.

BREAKFAST. 2 slices of gluten free toast. Add wilted spinach and scrambled eggs. You could sprinkle some cheese of parmesan. Glass of water or herbal tea.

Bowel of berries, nuts dried fruit with coconut milk.

SNACK - Banana or snack bar like Nakd.

LUNCH - Gluten free pitta bread, fill with whatever you have available, keep cooked chicken in fridge as a staple, or have sardines, or tuna and fill with chopped salad, feta cheese olives (olives again are one of the healthiest foods you can eat). Use a salad dressing of your choice. Finish with fruit, glass of water.

SNACK - eat what you fancy, some chocolate wont harm you.

DINNER - beef casserole. Now you have to buy a SLOW COOKER, i use mine all the time. Buy your veg already prepared, whatever you fancy, with potatoes, lots of nice veggies, some cubed beef, a gluten free gravy, turn your crock pot on in the morning and just shove all the ingredients in dont forget seasoning (you can add a little red wine). Make sure it is on high, and let it cook for about 5 hours. When you come home its cooked and ready. Yummy. You can find tons of recipes for slow cooker on the Internet.

My essential items. Slow cooker, halogen, soup maker, and smoothie maker and the microwave.

In the winter i make loads of soups, you can literally shove what you like in them they are so good for you and filling with nice toasty bread. You can take some to work in a flask.

Smoothies, you can have a smoothie with your breakfast, tons of recipes out there for healthy, the sky is the limit to be honest.

Slow cooker, you can make lovely curries, stews, cook a whole chicken in, just shove it in on high, with seasoning and a bit of garlic butter, rosemary thyme, and leave it to cook all day, yummy, and it makes a lot of moisture which you can use as a stock.

Halogen, i use mine everyday. I buy parchment paper, put some sliced potatoes, fresh veggies, and a piece of salmon, use lemon and seasoning, lift up the paper and seal it by scrunching the top together a bit like a pastie, and cook for 25 minutes on 200c in your halogen and have a lovely light lunch yummy. Or roast a chicken in it, whatever takes your fancy.

Oops i better close now, dont get me started on food lol. I hope the above helps a bit.

Anxiety is normal in MS. When you feel a panic attack, do something else. What do you like doing? If i start to feel a panic attack, i will play a silly game on the Internet, or do some cleaning, my house is sparkling lol… you have to just remove yourself away and do something else, so you are not focusing on the anxiety. It does work. Its really normal, and can be quite scary as it can literally just hit you when your not even thinking about it, but know the signs BEFORE it gets a hold of you is the key.

You have been through a lot lately there are no quick fixes, but you can focus on good things you have in your life, there are always good things sometimes we forget what they are. Or you can go to a happy place, we all have them. The trick to coping is to change the way you think.

I find the worse thing is the MONKEY CHATTER… we all have them in our brain. The monkey chatter that tells us things we dont want to hear, on and on it goes with negative thoughts, telling us we cant do that, or if we do that it will cause this, dont do that as you will be too tired afterwards, it chatters around in our brain, and we have to shut it up basically or give it something to do.

So now i draw on my internal strength which i know i have, i find a place where i feel empowered, and i go there, and show the monkey chatter that i can do, i have done it. My place is the here and now, i am here after 16 years of battling to get a diagnosis, i have managed to survive all of it, and have worked hard to get where i am, and have not allowed anything to stop me being here.

As chronic long term sufferers of a delibitating disease, we are all SURVIVORS, WARRIORS, we are the strongest of the strong, and we can do anything we want to do. I wont let my illness define who i am. I am strong, i want to survive, and i have done many good things in my life to be proud of, and I use these to get me through the day.

Writing down how you feel, what you have achieved, your best moments, your funniest times, your good times, is the way to make you feel better. You will have a lot you never even thought about.

All these good things are there if you want to see them. Every new chapter is a new path in your life. I always say to my grandchildren you can take the easy road, or the hard road its your choice.

Again my brain is in rambling mode lol… I must get up, i have chickens to feed, they need me. Take care, remember a little of what you fancy does you good, never deny yourself anything, just remember moderation, and balance is the key. xxxxx


Crazy Chick – what do you say to those who don’t feel they’re survivors or warriors or who don’t feel empowered.

What do you say to the ones of us who are at times bogged down, struggling, feeling unwell, depressed etc. etc.

We would love to ‘snap out of it’ but it’s not always possible!


Hi Steve,

You have had a lot of good caring advice, but let me pick up on something from your first post.

“… and double vision, also on the left side, though my MS doctor says my vision problems (which are quite mild) are not linked to my MS because there is no damage to the optic nerve.”

If by “MS” doctor you mean a neurologist, he is in error. The optic nerves (note the plural) carry the images from the retinas to the relevant parts of the brain. Diplopia (double vision) is usually when the two eyes are focused on different parts of their respective retinas, and the brain is then struggling to fuse the two images together. The usual cause is with the nerves controlling the focussing of the two eyes, or that bit of the brain that controls those nerves, or the same thing relating to the nerves/muscles that aim each eye at what you are looking at. Most diplopia can be dealt with by prism lenses in glasses.

Another thing. The two years between relapses is the old policy (say four years ago) and most neurologists believe in treatment with a DMD as soon as a diagnosis is made.

I would ask: Is your neurologist an expert in MS, or just a generalist. Maybe you need a referral to a different neurologist. Or maybe you need a chat with your MS nurse - if you have one - about DMDs (there are plenty opf people here who can give you references about early treatment).

Sorry, cannot help with the main problem.



Thankyou so much crazy chick, this is exactly what I needed :slight_smile: I didnt realise there were so many options. Ive not eaten eggs for around 6 months now, (I was led to believe these were one of the worse things for MS) so to hear theyre ok is great cos I love them! Omlette for tea tonight! I went to tesco this afternoon and stocked up on a load of stuff. Theyve got a pretty good ‘free from’ range, its all quite pricey but I guess thats to be expected. Didnt have any Bergan Bread tho but Im fairly sure they sell it at morrisons near me.

DoctorGeoff, sorry yes by MS Doctor I mean neurologist and yes he specialises in MS. I originally saw a different neurologist but he had somewhat of an abrupt manner and diagnosed me by sending me a letter. This led me to ask to see a different doctor who is the one Im still seeing. Hes a lot more approachable than the previous one but it does feel like Im being fobbed off a bit. Part of my anxiety is not being able to receive treatment and thinking things can be done to help but are not.

I spoke with my MS nurse over the phone a couple of days ago to tell her I was suffering with stress and that my vision, facial numbness and muscle weakness had worsened. My neurologist runs an open clinic once a week for relapses. Im seeing my gp on monday about the stress and anxiety and my MS nurse asked me to ask my gp if HE thought I was having a relapse. If he did then I need to ring her back and she’ll book me in for friday to see the neurologist. She also said she can’t be 100% sure if I actually have MS until an MRI scan shows new lesions (sp?). This is something my neurologist also mentioned last time I saw him. When I told her I was diagnosed over 2 years ago she seemed genuinely surprised by this. I really dont know what is going on, and Iam getting fed up with it all.

Also I am concerned that when I got my original symptoms although they improved a lot they never really went away. I thought symptoms with RRMS were supposed to completely go and return during relapses.

Thanks again everyone, any further help or advice would be greatly appreciated.

Steve x

1 Like

Dear Anonymous, I have only had 1 symptom with my vision which never completely went away. It started about 3 years ago when I noticed one day as I caught something out the corner of my left eye things were blurry. If I turn my head to my right and look out the corner of my left eye I see things in double. This only happens when looking at objects approximately over 1 metre away. Using the same technique, my vision is normal with objects that are approximately 1 metre or less away. Looking straight ahead my vision has aways been pefectly fine and when it improved, day to day I wouldn’t notice anything wrong at all, but I would use my technique to regularly check and have always had double vision to some extent. If I put my hand over my right eye and use the same technique its a tiny bit blurry but no double vision.

I had some tests done at the ophthalmology clinic, and they couldn’t find anything wrong and was deemed fit to drive. My current neurologist thinks the double vision might be caused by a squint but thats something Ive never noticed. Recently suffering with stress it has worsened and when looking over my left shoulder at things behind me I see double, but still only from distances of over 1 metre away. Just looking at things out the corner of my eye and keeping my head straight is now in double, but head on no problems whatsoever.

I hope all this makes sense.

Steve x

1 Like

I should add although there is no pain, my left eye aches somewhat when Im tired.

Steve x

heartofvermilion wrote:
“I thought symptoms with RRMS were supposed to completely go and return during relapses.”

Sorry Steve, it does not quite work that way. The big bad bits of the symptom(s) go away, but you are just a little bit worse than you were before.

If your double vision is when looking sideways, then it sounds like an eye-tracking problem. From the “straight ahead” position, the eyes move more to the outside than they do to the inside. So, when you look to the side or over the shoulder, that bit of the brain that orients the eyes is not quite doing the job.

Normally the best way to check for diplopia is to look at something like a road-sign or shop sign from at least 30 yards away. Look at one corner and cover alternate eyes and see if the corner appears to move. This crude test also indicates whether the diplopia is essentially horizontal or vertical - and it can help to be able to tell an optometrist which it is.

The more you write about your neuro/MS Nurse, the more I would start to question if they are bothering to read your notes. For sure, if you can get your GP to say “Yes, it sounds like a relapse”, so that your nurse can get you into the open clinic, this should get you back on track.



Morning Krakowian, i never said ‘snap out of it’ you interpreted that for yourself…

But what would I say to you, well you wrote an answer to me, which is a start isnt it, you showed passion in that and now i know how you feel, which is the first step for you to come out fighting. You stood up for what I wrote so why not use some of that passion and fight your own feelings and depression.

Communicating how you feel is the first step to a recovery.

What are your goals right now today when you read this? I so have empathy for what you wrote, as when i first started my journey my mother actually told me to SNAP OUT OF IT lol… actually although that made me mad, it also made me look at myself and how i was dealing with what was going on and in a way it showed to me it wasnt my issue but my mothers for not actually having any understanding of how i was actually feeling perhaps because i never told her.

Gosh i hate it too when i feel rubbish and someone says “oh you look well” lol… and i think in my brain how can i look well i feel like poop, but then i realised that at least that person actually NOTICED me lol… and not everyone knows how to deal with people who are chronically sick.

My goal for today is to take a shower, I hate it, as i know it will make me tired for the rest of the day and I will feel like rubbish but i am going to try.

I am depressed too, but i still feel like I am a warrior a viking, because i am battling and surviving this illness with everything i can throw at it, when i feel like it lol.

The key for me, the way i deal with it emotionally is to find something i like, or a happy place or music or cleaning my house. Thats why i said on one my posts my house is sparkling.

So what I say to you is keep up the passion, challenge me as much as you like, its a start isnt it? x

1 Like

Morning steve, hope you had a better night. If you cant find burgen bread Genuis is fine.

I missed the bit above about quorn, i tried it. It actually made me physically sick. I did some research and found that it can do that to some people, trust it to be me lol.

I think from what you wrote about what you eat that is all good healthy stuff.

About eggs, i bought the book written by a doctor who has MS and reckons he actually has it cured with diet. He states no eggs or perhaps just whites.

I spoke to a nutritionist about my diet and eggs as i have my own chickens, and she told me that an egg a day is the healthy way to go, as its full of good stuff, iron, everything we need, so i decided to listen to her.

Eggs are loaded with high-quality proteins, vitamins, minerals, good fats and various trace nutrients. A large egg contains (10): Only 77 calories, with 5 grams of fat and 6 grams of protein with all 9 essential amino acids. Rich in iron, phosphorous, selenium and vitamins A, B12, B2 and B5 (among others).

So eggs for me are back on the menu.

I stopped reading his book actually, and just ate what i knew was good for me, i follow the mediterrean diet because my mother was Italian, and she was 93 when she passed. Everyday she ate 14 olives (yes 14 had to be the number no idea why lol), and a glass of her sherry.

Olives are actually really healthy for us.

Anyway i am digressing again, quorn is off the menu for me, i would rather eat salmon, fish of any kind and chicken, i dont however eat pork or beef just dont like it.

Did you know that nearly all the medication neurologist gives us are based on anti depressants?

Two of the favoured choices to help nerve pain are both initially for antidepressant. Gabapentin and Amitriptyline and Pregabalin and I believe Baclofen helps anxiety in non MSERs and it is used for MSERS to help with spasticity.

So if you are on any of the above for nerve pain you are already taking antidepressant tablets albeit not sure if its the same dosage.

NB:. I have tried all of the above, and ended up a zombie each time, so i dont take anything, my only tablet i take now is one 2mg Diazepam at night to help me settle with nerve pain. x

1 Like

Sorry crazy chick, I’ve not been on for a while and only just noticed your post. Thankyou once again for your help, you really know your stuff! You have given me loads of ideas for meals and I feel back in control of my diet again. I’m even starting to put on a bit of weight. :slight_smile: Steve x

1 Like

Hi steve, i am glad you have put a bit of weight on good for you hun. I used to teach healthy cooking/living to drug and alcohol people in recovery. That was one of my jobs, I loved it. Food is so important, but the right food. If you need any advice anything just give me a shout. xx

1 Like