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new to this delimma

hi everyone am new to this forum, was diagnosed with MS nov 2014. had one full year of being practically house bound, had to give up my work that i love. i was a staff nurse and worked full time. now am in the process of being put on the srcap heap. lol not if i can help it.

my symptoms too many to mention have never went away in the last year. i was commenced on tecfidera June 2015, had every side effect on the prescription label, but willing to live with it if it works.

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keep on keeping on

tecfidera is best taken on an aspirin and an almost full stomach of tasty foods.

it would be nice if a drug that was supposed to be of help, did so without adding to your list of daily challenges.

the very best of luck to you

Yeah, best of luck! Getting diagnosed can be a massive shock to the system, what with all the changes going on in your body, and the changes that makes in ‘normal’ everyday life. If you happen to find your emotions going haywire, don’t be surprised or worried. Things like anger, depression, denial are all common things to experience. If you do, find a safe space to express & process it, whether that be with a friend or in a journal or on here or whatever. Bottling it up probably won’t help.

If there’s any questions you have about symptoms, medication, benefits etc, then ask away, as there’s sure to be someone on here who knows.

Dan

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Hi Margo

Welcome to the forum. It does take some getting your head round your diagnosis. I should think having a medical background ought to be helpful, but maybe you’ll expect to be more knowledgeable than you are about MS. You’ll probably gradually learn more about your disease and your own body gradually just like all of us. Keep in mind that everyone’s MS is different, we may share some symptoms, but not others.

Your side effects from Tecfidera should stop. Keep up the sandwiching the pills in between food, if you’re not keen on breakfast, try having it at lunchtime plus evening. Try anti nausea meds if you still feel sick (get prescription for eg omeprazole). Or try antacids of its reflux/heartburn type of reaction. If you get flushing, take aspirin at least 30 minutes beforehand.

You could still get some recovery from your initial relapse, sometimes relapses can take months and months to recover from. It can be so slow you don’t even notice recovery until one day you’ll realise something feels a little better!

The best advice I would offer a newly disagnosed person is to exercise as much as you are able, but don’t be afraid to slow down and relax. Fatigue is very common, so take time doing things. I suspect slowing down is one of the most difficult things to do, and we all overdo things at times, so try to manage your energy levels.

Sue

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Hi margo, I also worked as a nurse before diagnosis. I was diagnosed in 2008, I live in Birmingham am now 50 years old. I know about the stages everyone apparently goes through when they are diagnosed with illnesses, having looked after people with ms I also know that everyone is different. Also by coincidence 2 nurses I used to work with have also developed ms.

i use the word apparently when describing the stages people may go through when diagnosed with ms because I have tried to accept my diagnosis but have been Stuck in the depression stage since 2008. I joined a group to meet people with ms, we used to meet every fortnight but the group was stopped for various reasons. I moved from relapsing remitting ms to sp ms & have several symptoms which I will not go into apart from to say I am housebound & have very poor mobility & foot drop. Like I said everyone is different so try to keep positive, hopefully you may not develop the symptoms that I have. It does help if you have company but I live alone. The good news is I do not have any financial worries due to my private pension.

sylvia.

Hi Margo. I’m very new to this too and ain’t taking it too well. Dx end of May, I was in total denial as in, “I may have ms but I won’t let it effect me!”. Having chosen Plegridy as my dmd, I expected to carry on as normal. Discovering I can no longer walk any distance for a time, example just doing a grocery shop, was a sharp slap in the face. A relapse in September put me back in hospital for a week on iv steroids…again. Scared, angry, miserable, tearful yes, but no longer in denial. This week I have pins/needles in my foot alternating with numbness. It’s how my attacks started in the past and I’m frightened another one is coming. I’m hoping to change to Tecfidera when I see my Neuro in December. You must miss your career a lot…wishing you well.

Hi Poppy

Don’t expect to suddenly come ‘to terms’ with your diagnosis. It takes a long time for many of us to reach a compromise with it, let alone allowing it to rule your life. The fact is that being diagnosed with MS is crap. You’ve been diagnosed for 6 months. The feeling scared, miserable, downright pi**ed off at it probably won’t stop for a good long while if ever. But the tears will probably dry up. If that’s acceptance, then I’ve accepted it. But then it’s been around for a long time - diagnosed more than 13 years and actually having it for nearly 19. I’m still cross as hell about it.

I should think being on a more effective DMD than Plegridy might help. Plegridy is supposed to reduce relapses by about 35%. This is similar to the older beta interferons and Copaxone. Changing to Tecfidera would be a lot better (and no injectables) as it is estimated to reduce relapses by 50%ish. But then you might be able to swap to Tysabri (criteria that you’ve ‘failed’ on another DMD and had 2 relapses) so why not see if you can get that? It’s more effective than either at about 70%. Many people on Tysabri just stop relapsing. The trouble is that you’re diagnosed and then thrown a load of info about various drugs and told to just ‘pick one’. Have a look at the diagnosis tool on the MS Trust website: https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions/decision-aid

Best of luck

Sue

Sue. Thank you so much for taking the time to reply.:slight_smile: Yesterday really wasn’t a good day for me…I’m jjust going to dig out the eight or so booklets handed to me by my ms nurse, when diagnosed. I’ll have another read as I really must be sure of what I’m talking about and assertive when I see my Neuro. She doesn’t take any prisoners!!

thanks folks for all your advice, it does help and i appreciate all your wisdom, i have had mild to moderate symptoms of MS for 15-20 years and was in total denial of MS as i have a sister with MS. then out of the blue it hit me like a sledge hammer and an jumbo jet in November 2014.

i was admitted to hospital (where i worked may i add) and was diagnosed with RRMS. everyone that knew me could not believe it had happened to me, as i was the one who climbed the stairs 2 at a time, and had the job half done before anyone had started. always on the go and happy at my work.

i have accepted i have MS, i knew when i was waiting for the results from the lumber spine to come in and all other tests were negative, i knew it had to be MS, but how severe?.

what i cant understand is they have told me its RRMS when the f@#K does it go into remission. one year of RRMS, transverse myelitis, drop foot, numbness from the bust down to my feet, fatigue with capital F, issues with balance, bowels, bladder, eyes, throat, thinking, remembering, sleeping, and talking, and a whole host of other beauties to long to mention.

am still laughing because thats my nature, but i just feel thats its got to have progressed further than RRMS, because if i went undiagnosed for 15-20 with MS could it not be possible that these symptoms are now secondary or progressive. these answers i will not know until i see the neurologist in May 2016.

RIGHT FOLKs get your thinking caps on, how long should your symptoms last, i was told by the MS “that if my symptoms have lasted this long, ( one year) they will not go away” . How long ???

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Hi Margo

It’s simply not true that an effect that you’ve had for a year will have no improvement. Remember that we are all different and remission can last months and months for a given symptom. Even more than a year.

You should also bear in mind that your neurologist may have decided that it’s just not in your interests to describe you as SP when you might still be RR. S/he may feel that it’s too early to tell and also you could have SP with relapses. In such cases, a DMD can help. And you won’t get a DMD if you are given a diagnosis of SP. This is I believe the case with me. My neuro has stated that ‘essentially’ I am still RR, but the MS nurses seem to agree that it’s the kind of thing he might do. Ie think I could be SP but wanting to cover all bases while I seem to have some small relapses.

In your position, I would (for now) accept the RR diagnosis, start a good DMD. If you can, argue for Tysabri as it has been shown to help with some peoples existing symptoms (some that they’ve had for years) and can help SPers too. It’s possible to argue that rapidly evolving RR is one of the prescribing criteria (ie you don’t have to have ‘failed’ on another DMD first), and see what it does for you. Tysabri has an expectation of reducing relapse rate of 70%.

If you can’t get Tysabri, aim for Tecfidera. It has its own benefits, daily pill rather than infusions or injections and expected reduction of relapse rate of 50+%.

Meanwhile, get some help with your ongoing effects. This is where a good MS nurse can be invaluable. (As can a good Neuro or if you’re lucky and there’s one available, a neurological rehab specialist). Drop foot, once you get it, is most often permanent, but you can get orthotics to help, or if you’re in the right CCG(!) FES. Get a referral to a physiotherapist and if possible an OT. The physio can help with balance exercises and the OT with fatigue management as well as daily living adjustments and/or aids.

Also, look at what drugs you’ve been offered and see what else might help with your symptoms, I’m thinking something for fatigue, bowels, bladder etc etc.

Hopefully some of this will help. If not, post again.

Sue

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Thanks sue, I’ve been on tecfidera since July 2014, had all the labels side effects to contend with as well, they are now beginning to settle. Ive had physio, OT and have all the gadgets just can’t seem to get these symptoms into remission. I eat a good diet and try to do light exercises daily, I think am just so impatient and think they should have gone by now. All the medical experts I spoke with have all said I will go into remission. Lol when ??? .

Sorry Margo. Clearly not thinking / reading back through the posts (even my own!). I was super fatigued yesterday and shouldn’t have been allowed near this forum! Or anything else that required anything like a brain.

I think the only relevant part of my post was the first bit, sometimes remission does seem to take forever and then one day you realise you can feel something a bit better than you did. Or maybe you compensate for the deficits over time and that’s why it seems to get better!

Sue

Hi Margo, they are not sure which MS I have as I do not tick all the boxes but what I have found is that each day is like lucky dip and I don’t know which symptoms I have until I actually get out of bed and take a step. Some days are brill, some days an arm won’t work, some days a have a tired leg, sometimes I feel well but have brain-fuzz! Some days I get out of bed and say hello MS and some days I just get up and say lots of rude words telling it where to go. In retrospect I had a massive life but always had illnesses so this just seems a continuation of that, but I don’t come across many other people who have every day different. Best day, get up and do everything early doors, worst day, stop in read loads of books and watch Columbo. Don’t know if this helps but the pot-luck suits me as it keeps me guessing each day. The thing I have found most frustrating is that I have had to adapt all of my clothes as I struggle with zips so I’ve been shopping for stretchy things and things with poppers - I can now get my new coat and and get it off without phoning a neighbour! I still don’t tick all of the boxes at the clinic which is in my favour now as it keeps them guessing too.