Information for new MSers from people living with MS

Hi all,

I’ve posted this in the new dx forum to. I’ve copied it from elsewhere but think it’s worth putting on here too. Let me know or if you have any additions to suggest.

Wishing you health and happiness


For any new people here.

Bet you Wish you weren’t here.

Here are my MS top tips (my own, I am not part of something else). I am from the Uk (sorry if anything I say does not fit for you).

Most importantly, you have M.S. you did nothing wrong.

Tec has one of the best chances of holding back relapses, it does not cure MS but it may after a few months lessen symptoms of recent relapses, but that may be due to remitting from the relapse too.

If you have a mortgage and were lucky enough to take out critical illness cover on it, check it to see in what circumstances it pays out for MS. Some endowment policies insurances cover MS.

Check the age of anything you read on the web, lots has changed in the last 5 years, even the last year. Everyone’s MS journey is different, you may not experience what others do. New discoveries even if will help us, take ages to be developed and researched. Some new discoveries: “simple idea can cure MS” - such as “Doctor wanted to cure wife finds that a vent needs putting in our brain to stop iron build up and cures MS”, turn out to be not true (lancet). One simple trick huh, go figure.

Diagnosis may give you some answers, but is likely to be a loss of the certainty of life as you knew it. Grief comes from loss and you may well have a grief reaction to your diagnosis. You may well feel shock, anger guilt etc. The last stage of grief is acceptance, may you get there soon. Here is a link to an article:

There is a MS trust website for more information and there is an enquiryline for questions about MS that you can call free on 0800 0323839 (Monday to Friday, 9am-5pm) or 01462 476 700 if you’re using a mobile or email at

Vit D 4000 iu daily (this is a large amount, available on the web if not prescribed for you) you may get advised re this by your MS neuro but it modulates your immune system and promotes any mending possible.

Mindfulness practice can help coping with M.S. Anxiety / pain.

Turmeric capsules are a natural anti inflammatory.

Shona Innes uses manuka honey…more expensive but says a natural antibiotic and says she has not needed antibiotics in years.

Our immune system is attacking our brain and spinal column, things that boost out immune system are not a good idea, immunisation is good e.g. Flu jab. - I dont know either - go figure.

Whats all this about inflammation? Lets see if I have this right? The myelin gets damaged, then there is an inflammation, the inflammation prevents any possible healing. Then the damage is re attacked. Now then, if someone corrects me / adds to this, it’s a win win! as I will get to learn from it.

Hopefully someone will be along soon to tell you more about stem cell treatment.

MS hug: I really do not want to tell you this but there is a not nice MS effect that I hope you never have where the intercostal muscles, those between the ribs spasm. It is hugely ironic that it is called the MS hug. I want you to know about it this as it is sometimes mistaken for a heart attack. If it happens and you are in doubt about the heart attack, I’d want you to get checked out, but I also wouldn’t want the MS hug to come as a surprise to you.

Shift ms is a good site for further MS support from others with MS

There is a facebook wheelchair users group.

Pre prescription payment. Paying for your prescriptions by the year can be cheaper, now you are likely to need more! (UK).

If off work sick, if work sick pay is running out, some firms have insurance for staff off longer term.

If you get leg twitches / spasms / cramps, magnesium can help and / or tonic water. I take my tonic with creme de cassis, seems to work even better then. Gin with the tonic to aid life. Tonic water now coming in flavours such as lemon and elderflower. It needs to be “real” tonic with quinine in it. There is Magnesium oil spray for direct application, can be got from Holland and Barratt.

I have been told that eating a few marshmallows through the day to help us with loose stools / urgency. I have been told that humming while being still can help reset our urgency with urine. NO caffeine, I have just been told NO caffeine, bum!

We may get over sensitivity to noise / stimulation called Myoclonus, it makes me always want to turn music down, but can make crowds difficult.

Smoking can speed relapsing or progression. After 20 years of giving up on and off that was enough for me (I hope). It is hard, I love ciggies, I want to smoke, it is the most addictive thing, thats why so many of us are giving up, but you know, try.

I heard some advice for retiring: “get up, go out”, I interpret this for MS as : “Do all I can”. My partner got me a fold up cross trainer so that I can “get up, do all I can if weather is bad”, yeah - those things keep their shine really well. I have a part motorised trike to get places I cant walk to.

One person commented on this for me that we should “Do it now, if you still can”, travels etc, don’t put things off that you can do now with the movement you have got. (If this was you, let me know and I will credit you if you like).

Improved diet will help us all, I’d sure be healthier lighter, but until research prove that will make my ms better, I will choose the meds.
A small study involving 17 people with MS found that a group following the paleo diet (fish, pasture-raised meats, fruit, veg, no grains, legumes or dairy, limited refined sugar and processed foods) reported better fatigue and quality of life. Exercise capacity and arm function was also better.
Source: MS News Today
Overcoming MS info here - although I believe we should take disease modifying medication as offered and works for us -

Exercise if we can is good for us, swimming is best. The increased oxygen in our bodies, promotes any possible healing.

I am told MS won’t kill us, ok, I am going to go with that.

If you can walk and if your walking / balance has been effected, neuro physio worked for me. Wiifit balance boards may help.

Also when walking I read that walking with a beat can help us, my ladybird headphones help me.

Hypnotherapy helped with my stamina when walking.

I have a fold up - spring out walking stick I keep in my back pack to help when I have gone too far by going down to the end of the town. You can get them with flowers on and everything.

Sarah Jones says: one I wish someone told me earlier, if you have foot drop, you can get a Velcro/elastic/leather ankle brace that you put on when you need it and it helps lift your toes up. In the UK they are free on the NHS, you just have to get your neuro to refer you to a physiotherapist and they can order one for you.

I had some of my handbags made into back packs by using their own straps or added strapping, this helps my balance.

Relapsing and remitting:

Relapses and Flares If you are relapsing and remitting new pain / effects can worry us, some of these pass in under 48 hours. If in doubt - tell your ms nurse, if it is a relapse you may need steroids.

Even if a person still feels great while not on a Disease Modifying Drug (DMD), they can still have “silent lesions”
forming with no resulting disabilities at that time…unfortunately, due to the nature of MS being a chronic and progressive
disease, the resulting disabilities usually show up later, and by then, the resulting damage might be permanent. This is why
most neurologists want the patient to start on one of the various DMDs, as soon as possible. (Steve Carrick taught me this).

Tecfidera is being prescribed more and more, the majority of people get no side effects, some people and I get infrequent flushing.

A bacterial infection can trigger a relapse, urine infection or chest infection. I was told to contact doctor for antibiotics. Sometimes it can be a challenge to know if we have s virus respiratory infection or a bacterial chest infection.

This film is a great illustration of different symptoms of M.S. By Kaleigh D’Anna. The second half does show the person resolving to make the most of it, not all of us can resolve to overcome the effects of our M.S. but maybe it can help motivate those of us who can, do what we can.

If you can see any additions or improvements for these tips, please let me know. Jx

Hi J,

What a good post. Some really great tips and ideas.

I would add - keep a diary of your MS - include all symptoms with duration if possible, all appointment dates and who with, medication start date and dose, any aids and when you got them , eg wheelchair etc.

Makes it so much easier to fill in forms for Blue badge etc. Just completed PIP form then face to face I bamboozled them with facts and dates. All to my advantage.

Jen x

Brilliant and very thoughtful xx

keep all your letters from consultants and ms nurses in a file.

i did this but due to family upheaval last christmas the file burst open and all my paperwork ended up in a big nasty mess.

refer yourself to the bowel and bladder clinic as these are brilliant for continence problems.

try your nearest ms therapy centre for HBOT (Hyper Barric Oxygen Therapy).

make sure that you keep in contact with friends.

mine used to see me once a month but this has dropped off now. i need to send some texts to them.

Hi Carole

Your advice about keeping in touch with friends rings true. Having a clear out last week and I found a wedding invitation from my old friend and flat mate who moved 300 miles away once she married and we lost touch, I haven’t seen or heard from for about 30 years. I did a search on Facebook and found her. She’d also been looking for me 6 months ago. We’ve been in touch and spend 2 hours gossiping on the phone this morning. She’s coming north sometime this year and also invited me down to stay. Just like old times!!. I wasn’t brave enough to tell her of my recent diagnosis, I’ll keep that for another time. But it’s brightened up my day. X

hi KT

so pleased that you found your friend and are back in touch.

i know that mine have not moved away but they are working and i’m not so…

i’ll still keep trying to get in touch.

carole x