gemma81 12/01/15
Last reply 3 years ago
new to ms in need of friends

Hi to everyone. I’m Gemma, I was diagnosed with MS last April. It started off with the l’hermittes (not sure if spelt right) like a electric shock running down my spine and getting pins and needles in my hands and feet. Well within 3wks I had gone from having that to not being able to walk, I had lack of concentration too which with all that goin on I had 3young children to see to. I had my MRI scan as I was taken to hospital and there I stayed for 8days. The scan confirmed I had 3 lesions on my brain and 1 on my spine. I had physio for 10wks to rebuild my strength as it seemed to have effected my left side more. I have had good and bad days since. I started taking tecfidera in November but unfortunately 22nd December I relapsed and still recovering. Ms nurse prescribed me really strong steroids which were awful but I’ve had a side affect of thrush in the mouth. Dr’s have given me nystan which doesn’t seem to be working, if anyone knows of anything else that may help would be gratefully appreciated otherwise its back to the Drs. Ms nurse have now said due to only being 8months ago since last relapse that I may need another scan and need 2nd line treatment but I have no idea what that is??? I don’t dwell on my MS and what my future holds mobility wise, I just take each day as it comes but you do take the small everyday things for granted, well I did, not no more! Would love to chat with people to see how you all deal with things. Hope to chat soon, take care, be happy

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stumbler
3 years ago

Hi @gemma81 , I’m not pleased that you have a reason to join our site, but, given the circumstances, I am glad that you have found us.

OK, the December “relapse” could well be the result of the introduction of Tecfidera and your body learning to tolerate it. Did you start on a lower dose before going to the usual dose?

So, this relapse, did it involve new symptoms for you or was it existing symptoms that were being exaggerated? A relapse has a specific criteria, as explained here :- http://www.mssociety.org.uk/what-is-ms/types-of-ms/relapsing-remitting-rrms

Another MRI scan may prove, or disprove, that you have additional active lesions.

High Dosage Steroids are prescribed for 3-5 days to help the body recover from a relapse. This recovery will be ongoing for you over the 6 – 8 weeks following the steroids.

Oral thrush can be a common side-effect of Steroids as explained here :-
http://www.nhs.uk/Conditions/Oral-thrush—adults/Pages/Introduction.aspx . Nystan does seem to be a solution to this problem. But, keep talking to your Doctor if this doesn’t resolve.

Taking each day as it comes is a good attitude and probably helps you keep your feet on the ground. Especially with three young kids.

It’s best not to worry or stress about your MS. It just doesn’t help at all and can actually antagonise your MS and make it worse!

So, look after yourself. Have a healthy, balanced diet and try not to over do things – I know, three young kids, who am I kidding! But do try and rest up when you feel the need. Have a look at the “Spoons” theory for how to live with MS :- http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Anyway, I hope you find your time on the forum to be beneficial. You keep asking and we’ll try to keep answering. 😉


brownk
3 years ago

Hiya
I’m new to all this too…literally being diagnosed currently…but if you want to talk to anyone add me as a friend and we can hun. I’ve got kids too so we will have lots to share I’m sure xx


bernie
3 years ago

Hi me to currently diagnosed September starting medication 3 Feb and still trying to get my head round the unknowing. Like other ladie I too have kids ageing from 21 too 10 so us newbies? can chat anytime no prob, head up and take care!! Bernie Xx


jay23
3 years ago

Hi @gemma81, I am a newbie and a parent too. I added you as a friend if you need to chat.


gemma81
3 years ago

Hi all, many thanks for the replies. It great to finally talk with people who actually know and understand what you are saying instead of looking at u stupid! Its also nice knowing u can talk with other parents with MS who understand how difficult it can be when u hav a 3yr old that wants u to run up the stairs or run round the park and u just physically can’t, its bad enough when u haven’t got the strength to lift a kettle! Don’t know about anyone else but I love having a cuppa lol. Keep smiling all 🙂


gemma81
3 years ago

Hi stumbler, many thanks for your reply. My symptoms with my current relapse were the same as the one I had back in February last year. Difference I noticed this time round is that my pins and needles seem far worse this time, and a horrible sensation on my upper body right down to my nether regions!! I didn’t have that last time. I haven’t driven for 3wks and don’t plan to until my balance is better and have full sensation in my hands. Do u know if there is help out there or any advise on who I could talk to about getting my 3yr old to and from school? I had to keep him off one day last wk as I had nobody to take or pick him up. As for the thrush I’ve been taking nystan since last Thursday and there is no improvement yet. I’ve read the story on spoons, its definitely given me alot to think about! Thanks 🙂


gwenny
3 years ago

Hi Gemma81, Like Stumbler I’m glad you found this site too, it’s a great comfort knowing we’re all in the same boat re the MS, so don’t be afraid to ask questions, and by the way there’s no such thing as a “silly question”
As the MS affects us all differently, there’s bound to be someone with similar symptoms as yours.
Hoping you are able to find someone to help out with your little people, I guess I’m lucky there as my boys are all grown up with families of their own. I was diagnosed 17mths ago, aged 58, so quite old as far as MS goes, but if you want to talk, I’m never far from my computer 🙂
Take care, and I hope things improve for you 🙂


eta
3 years ago

Hi Gemma,

I was diagnosed some 8 years ago and I’m just learning, I think, to cope with it. Any time you want to chat give me a shout. No children but two dogs and a host of rodents.

Eta.


gemmat2014
3 years ago

JoHanna

I have added you I was diagnosed just over 2years ago.I have a 18month old,starting copaxone treatment 28th Jan sort of looking forward to getting into it if you know what I mean,I did try tecfidera but couldn’t tolerate the side effects so back to my original plan of copaxone.as when I was in the process of being diagnosed we decided it would b the right time for a baby not knowing what the future would bring I wanted him before I got on medications then had to come off them etc to get pregnant so far was 5weeks pregnant when I got told it was ms so my Neuro was wanting to start me on treatment I don’t think she was expecting me to say I was pregnant.Haha,but so glad I did it that way round as now hes here I will get myself on the right medication.I breastfed which also held up the process and I do have my parents who help out 3days a week whie me and my partner are at work full time.could your little one go to school with a friend at school that lives close by?


gemmat2014
3 years ago

Ps that was supposed to say hi Gemma,not JoHanna lol


themsinme
3 years ago

Hi Gemma, I was diagnosed in April 14 also finally, after 20 years of weird symptoms which got worse and worse. L’hermittes was one of my favourites, probably a bit weird to admit that, but the tingles were pleasantly weird…

Anyway Hi, I know you feel like you’re facing an uphill struggle, the reassurance being there is a path ground in to follow with experienced MSer’s

🙂


gemma81
3 years ago

Hi gemma2014, I sent u a message earlier not sure if u received it?? I’m looking to go bk to wrk this year. I had to finish my job due to being diagnosed with MS and had a terrible relapse and couldn’t risk driving 40miles there an bk everyday. I’ve since had another relapse ovr Xmas an still recovering. Hey ho life goes on an I fight everyday an not let me get me down. I tell my boys that ms stands for magical and special it just a way that we as a family cope and making light of things especially when my balance isn’t good, they laugh and say u’ve been drinking again lol!! Hope ur feeling well take care


bonnielassie
3 years ago

Hi Gemma. Have read your posts and just wanted to say ‘hi’. Sounds like you’re going through a rough time at the mo but glad you’ve found your way on here.

Like others have asked do you have any family/friends who you could ask to help you out? (I know it’s not easy to ask for help though). Have you spoken to your Ms team about it – they could perhaps could point you to where you could get some help. Or has the school offered any suggestions?

A question for everyone out there – what chat/support forums for Ms are there? From what I can find there aren’t that many or don’t have too much activity. This one is great though 🙂 I had breast cancer in 2010 and found there to be so many more forums for you to share concerns and ask questions. It had a great support network – not that I’m recommending having to deal with bc though.

Anyway, take care Gemma and I hope things improve for you. Let us know how you are. Xx


gemma81
3 years ago

Hi bonnielassie, many thanks for ur response. Unfortunately we’ve not long moved house and I know moving is meant to be really stressfull but for me personally it was really exciting to move to a nicer more quieter environment and I feel much more relaxed knowing my children are happier as well as myself and my husband. So at the moment we don’t know very many people and I’m quite a private person. I will when I’m able to drive again speak with the school and perhaps ring the council or social services and see if they can help. I’m ok I deal with MS by laughing at it that’s how I cope but the person I really feel for is my dad. I live up in south wales and he lives in Kent, he hasn’t taken in that his daughter has ms but I reassure him all the time that I’m ok. Anyway enough bout me, how are you? What do u do to manage? Speak soon and keep smiling


waynexxl
3 years ago

Hi, Gemma! I have found this forum to be very enlightening and to be able to chat with others who are feeling the same way is comforting, as you’re not alone. There are lots of wonderful suggestions here on how to cope – most boil down to this: stay positive, rest when you need it, eliminate stress where you can, eat a healthy diet, and exercise as you can. There is hope out there for those of us affected by MS. Someone on here recommended Professor George Jelinek and his book/website overcomingmultiplesclerosis.org – I have found it quite uplifting and am just starting to implement his recommendations.

Be well and good luck!

Wayne


gemma81
3 years ago

Hi Wayne, many thanks for ur kind words. I will definitely have a look online for the book you have suggested. I have found this site really helpful just as you said, it’s a great way of finding out how other people cope on a daily basis. How long have you had MS if you don’t mind me asking? Take care keep smiling


jman
3 years ago

Welcome to the group, its a fantastic family of MSers, and a few supporters. (I’m one of the latter )

Quite a lot of us dotted about the UK and beyond:)


justjon
3 years ago

Hi guys new to this forum as well! Not new to MS though! Diagnosed in 2009 and struggled with 4 years of Rebif Injections (we didn’t get on).
Memory issues concerntration, balance etc always an issue. Used Twitter a lot in my early days from diagnosis found out loads of information and had some great experience shares from people all over the world! So helpful to share these Ms issues and talk to people in the know!


cehoner
3 years ago

Hi, I am pretty new as well i was officially diagnosed 6 months ago but it’s all still pretty new to me as well so feel free to talk if you would like.


northernlass
3 years ago

Hi Gemma, wow what a lot you have had to be dealing with and with 3 small children. I too was diagnosed in April 2014 but as of yet no medication other than a five day course of hideous steroids because still having a relapse.. been over a year now…. don’t know how you coped with those and 3 kids on the steroids and relapsing too.. I hope you have a good support network around you and now new MS friends on here, you sound strong and positive taking every day as it comes, stay strong and I hope you get on an even keel with your meds and relapse soon. Best wishes


sunnydaylover
3 years ago

Hi Gemma

Wow, you’ve had a hard time. I too was diagnosed last year, in May.
Always someone on here for you.xx


gemma81
3 years ago

Evening MSers!!!,hope everyone is doing ok. Got to admit its great having found this site coz u can have a moan and a chat to people who bloody understand how u feel lol. Don’t get me wrong I love that I’ve got friends and family that support me but u know when ur having a crap day and u don’t know why and u feel drained even though u haven’t physically done anything and they turn round and say why do u feel like that when u haven’t done anything!!! Exactly!! Thats MS but that don’t fully understand nor do I half the time lol, got that one off my chest! Anyways keep smiling


justjon
3 years ago

Been shattered all weekend! Luckily I’ve a week off work next week as my batteries need a serious recharge! “Smile and wave” is what I stand by! Always try and keep smiling no matter what happens.


bonnielassie
3 years ago

Hi Gemma, sorry it’s taken so long to get back you after your reply. How are you doing now? Glad you’ve found this site helpful – always good to have a safe place for a vent/moan :-).

How are your symptoms now? Unfortunately my legs are still as bad as they were re tightness and stiffness. Still trying to ride it out, hoping it will improve soon but it’s hard. Am bit fed up too as now having two relapses just outside of a year apart (even though I would blame one solely on having surgery), means that I’ll probably have to consider going on DMD’s and all that that entails. 🙁

Anyway, hope you’re ok and keeping smiling. Xx


leobates
3 years ago

Hello Gemma, I am in the process of diagnosis. On January 6, 2015 the doctors told me they have ruled out all other options but MS. I see a Neurologist on Feb’ 4 for a consultation. My next MRI is in June so I will be stuck in limbo for a while. I am trying to come to terms with the changes in life ( I had to buy a cane on Jan 15/15.) I have three young boys at home and have not found the strength to tell them yet. the kids have always known that daddy has a bad back so for now they think that is the problem. They are 9-7 & 5 and I have no idea how to make this make sense to them? wishing you all the best, take care.


justjon
3 years ago

The hardest thing for me was telling my kids! One was 9 and the other 5. Had loads of material and a kids DVD to play them that helped explain it. They’ll ask loads of questions and still do! My daughter would help me with my injections etc and I tried to involve them in everything which I guess helped keep them informed. I couldn’t have hidden anything from them. Good luck with your diagnoses and if your offered a suite of drugs, do your research would be my advice. Good luck!


stumbler
3 years ago

@leobates, do check the MS Trust’s website. They provide literature about MS that is aimed at all ages :-

http://www.mstrust.org.uk/shop/products.jsp?catid=47

You may want to check all their publications for advice and knowledge on all things MS. 😉


leobates
3 years ago

Thanks for the kind words justjon, I need all the help I can get. What is the name of the DVD? I would like to check that out, need to tell the kids. Thank you so much.


justjon
3 years ago

Ha ha I knew you’d ask me that! My memory is shocking! I believe is was from the MS society but can’t remember what it was called. It’s a 2D cartoon production. It helped a bit and led to lots of questions which is what I encouraged. I’ve always tried to be transparent with them and ideally they will be aswell? Teenage daughter not so transparent!!!! Lol
I’ll get digging and see if I can find the DVD!

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