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Newly diagnosed

Hey everyone,

I have posted on here a couple of times previously about my symptoms but last week i was diagnosed with MS, the day i had dreaded for 2 years. I firstly had optical neuritis and was told from an MRI i had 2 lesions on my brain in aug 2016 and dec 2017 i woke up and was numb down my left side, i could still walk it was just a very strange sensation, like the aftermath of pins and needles, after another MRI i was told i had a new lesions but this time on my spinal cord which has led to the diagnosis. Im suffering with coming to terms with it and i feel like im alone as i dont know anyone else with it and its so hard to speak to people who dont know anything about it! I just wanted to know how everyone else dealt with the diagnosis. Also did you tell everyone? I have told my close family, my manager and a couple of very close friends but i am due to start Tecfidera in a week or so and i am worried i might get side effects and other people ask questions so im in 2 minds if i should tell people?

Whats peoples experience with Tecfidera?

has anyone tried the overcoming MS programme and is it worth a try?

any advice on being newly diagnosed is very much appreciated.

thank you in advance, Sophie

hi sophie

first up, take as long as you need to come to terms with your diagnosis.

same with telling people, it’s your illness so it’s your choice as to who and when you tell.

i live in a small town where we know most of the residents.

the first time i took my walking stick out, a burly brickie came out of the pub to give me a hug and a kiss.

then two more burly brickies did the same.

after that i told everybody.

tecfidera can have dodgy tum side effects but not everybody gets them.

overcoming ms is an excellent book which you can get for free if you go to the website.

carole x

Thank you Carole.

i want to tell more people so they understand but i dont want to be treated differently. I might see how i go on Tecfidera and go from there, ive herd alot of people get flushing which might be noticeable to other people.

Thank you, i have been on the website and signed up for the free book so im just waiting for that to come. I have looked on the website and have been researching the diet which i am trying to do but it seems so hard!

Sophie x

hi sophie

be very careful if you are trying a diet very different to what you are used to.

common sense healthy eating is the best way to go.

i tried the Best Bet Diet when i was just diagnosed.

too many "no"s.

no dairy, no legumes, no wheat…

i ended up eating hardly anything, losing far too much weight and becoming very weak.

my youngest son told me one day “for gods sake, mum, eat something proper!”

i don’t eat much meat anyway but dairy! i could live on cheese.

milky coffee and a piece of toast, i couldn’t live without!

if i remember right, Jelinek’s diet has lots of oily fish, which i used to eat regularly but having it because i thought i had to, put me right off.

really you can’t go wrong if you have lots of plant based food.

my youngest son is vegetarian and so i have discovered the joy of chick peas!

so take the diet easily, make sure you eat enough because you are battling ms and warriors need good food.

flushing from tecfidera happens very occasionally.

tell people you see every day that you are on medication that makes you flush.

it could be the menopause so they shouldn’t pry.

i missed my second tecfidera yesterday so took it as i was going to bed. i woke up feeling like i had sunburn!

find your nearest ms therapy centre and start going there.

i go to one just outside of manchester and it is fab.

great people who between them have had all symptoms and treatments but they are a cheerful bunch.

i have Hyber Barric Oxygen Therapy there, which involves sitting with 6 others in a decompression tank breathing pure oxygen through a mask for 60 minutes.

carole x

Hi Sophie

You know, it doesn’t matter how prepared you are for the diagnosis, it still hits you like a wet kipper round the face. And probably every morning when you wake up, you have to remind yourself that ‘oh yeah, MS’.

You don’t have to come to terms with it, or learn how to handle it. Just let yourself feel a bit down and gradually get used to living with the absolute bas*ard. Worry more about how you feel than about telling other people, your family and close friends will help support you I’m sure. Tell other people as the mood strikes you, or just when you feel like it.

There’s a really useful page from the MS Trust that has helpful hints to a lot of things, like telling other people: https://www.mstrust.org.uk/understanding-ms/newly-diagnosed-multiple-sclerosis

With regard to starting an MS friendly diet, don’t try and start a new diet simultaneously with starting Tecfidera. It would be a very bad move. Lots of people have trouble with upset stomachs when they start ‘Tec. The advice is to sandwich the pills in between two bits of food, particularly stodgy food (eg porridge, toast and peanut butter, yogurt, etc). So the diet thing might cause you to suffer more side effects.

If you do have bad nausea from the Tecfidera, you could try getting some extra low dose pills to make the transition into the full dose slower. In fact lots of people try to get a lot more of the low dose pills. The usual way to start is by taking half dose pills twice a day for a week, then go straight into the full dose pills twice a day from then on. If you n start slower, you’ll find all the potential early side effects much easier, so the suggestion is one half dose pill a day for the first week, two half dose for the second week, one half and one full dose in week three and two full doses in week four. Talk to your MS nurse or the prescribing centre nurses about doing it this way.

I actually didn’t do it that way, but I did sandwich my pills with stodge for the morning dose. I didn’t get any flushing. (I only took them for a few months and take no DMDs now as I’m progressive.)

And you are most welcome to keep coming on here and asking for help whenever you need it.

Sue

Hi Carole, I know what you mean about all the "no"s, I’m not that fussed on meat anyway so I think I will avoid that and dairy and try to eat as much fresh food as possible without restricting myself too much and make healthier choices like whole grain pasta/rice/bread etc. I work on a reception with around 150-200 people coming through daily so i’m really hoping the flushing stays away as much as possible! So your on Tecfidera, how long have you been on it and has it helped you? Do you get any side effects? I’m going to have a look into the centre’s because I think it will really help to spend time with other people in a similar situation. My mum has mentioned to me about the oxygen therapy so i’m definitely going to look into it, does it help? Sophie x

Hi Sue, I know even though I have had nearly 2 years since the first time it was mentioned I had 70% chance of developing MS, when I was actually told the words ‘you have MS’ it hit me like a ton of bricks, nothing can prepare you for it. The past few days my body feels like its been hit by a bus but I think its mainly the stress of the diagnosis making it worse. I think with telling people I will probably wait until I feel like it is effecting me more and feel like people need to know because at the minute although I am in pain noone would ever look at me and think anything is wrong because I try not to let it get the better of me and try to carry on as normal as possible. I think I will introduce the diet slowly by changing little things at a time rather than in one big go as it might be too much change for my body when I start Tec in the next couple of weeks. Whilst you was taking Tec did you think it helped at all or was you not on it long enough to feel any effects? Sophie x

To be honest Sophie, I think I was already progressive. My neurologist had/has the pragmatic view that until you run out of DMD options or you have clear clinical evidence that a person has changed from RR to SP, staying on a DMD is a sensible precaution.

So I was on Tecfidera for about 5 or 6 months. During that time I had no relapses, but then, I probably wouldn’t have anyway.

Best of luck. Don’t feel that you have to rush into ‘coming to terms’ with MS, or tell anyone who doesn’t need to know. And keep coming on here, let us know how you get on.

Sue