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.
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 ânormalâ everyday life. If you happen to find your emotions going haywire, donât 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 wonât help.
If thereâs any questions you have about symptoms, medication, benefits etc, then ask away, as thereâs sure to be someone on here who knows.
Dan
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 youâll expect to be more knowledgeable than you are about MS. Youâll probably gradually learn more about your disease and your own body gradually just like all of us. Keep in mind that everyoneâs 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 youâre 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 donât even notice recovery until one day youâll 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 donât 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
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. Iâm very new to this too and ainât taking it too well. Dx end of May, I was in total denial as in, âI may have ms but I wonât let it effect me!â. 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 steroidsâŚagain. Scared, angry, miserable, tearful yes, but no longer in denial. This week I have pins/needles in my foot alternating with numbness. Itâs how my attacks started in the past and Iâm frightened another one is coming. Iâm hoping to change to Tecfidera when I see my Neuro in December. You must miss your career a lotâŚwishing you well.
Hi Poppy
Donât expect to suddenly come âto termsâ 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. Youâve been diagnosed for 6 months. The feeling scared, miserable, downright pi**ed off at it probably wonât stop for a good long while if ever. But the tears will probably dry up. If thatâs acceptance, then Iâve accepted it. But then itâs been around for a long time - diagnosed more than 13 years and actually having it for nearly 19. Iâm 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 youâve âfailedâ on another DMD and had 2 relapses) so why not see if you can get that? Itâs more effective than either at about 70%. Many people on Tysabri just stop relapsing. The trouble is that youâre diagnosed and then thrown a load of info about various drugs and told to just âpick oneâ. Have a look at the diagnosis tool on the MS Trust website: MS Decisions aid | MS Trust
Best of luck
Sue
Sue. Thank you so much for taking the time to reply.
Yesterday really wasnât a good day for meâŚIâm jjust going to dig out the eight or so booklets handed to me by my ms nurse, when diagnosed. Iâll have another read as I really must be sure of what Iâm talking about and assertive when I see my Neuro. She doesnât 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 âthat if my symptoms have lasted this long, ( one year) they will not go awayâ . How long ???
Hi Margo
Itâs simply not true that an effect that youâve 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 itâs just not in your interests to describe you as SP when you might still be RR. S/he may feel that itâs too early to tell and also you could have SP with relapses. In such cases, a DMD can help. And you wonât get a DMD if you are given a diagnosis of SP. This is I believe the case with me. My neuro has stated that âessentiallyâ I am still RR, but the MS nurses seem to agree that itâs 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 theyâve had for years) and can help SPers too. Itâs possible to argue that rapidly evolving RR is one of the prescribing criteria (ie you donât have to have âfailedâ on another DMD first), and see what it does for you. Tysabri has an expectation of reducing relapse rate of 70%.
If you canât 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 youâre lucky and thereâs 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 youâre 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 youâve been offered and see what else might help with your symptoms, Iâm thinking something for fatigue, bowels, bladder etc etc.
Hopefully some of this will help. If not, post again.
Sue
Thanks sue, Iâve 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 canât 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 shouldnât 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 thatâs 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 donât know which symptoms I have until I actually get out of bed and take a step. Some days are brill, some days an arm wonât 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 donât 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. Donât 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 Iâve 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 donât tick all of the boxes at the clinic which is in my favour now as it keeps them guessing too.