Hi everyone,
I’ve recently been diagnosed with MS. I’m only 25 (just), I’m still trying to get my head round it.
I’m just wondering how everyone copes?
Just wanting to talk to somebody really…
hi amy
i was 50 when i got my dx, although thinking back i have had many unexplainable things going back to when i was 17.
don’t worry hun. you are young and strong and it shouldn’t stop you from doing almost anything.
my friend, who was very supportive to me, had a daughter who was diagnosed at 25.
this daughter had a two year old child but she continued her studies and is now an occupational therapist.
have you been offered a DMT?
the new oral ones are very effective.
as for coping, don’t turn down an opportunity for a day/night out with friends.
come on here to ask any questions at any time.
if you don’t get replies try everyday living which is a busier forum.
just get on with living your life.
carole x
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Thanks for that Carole!
In waiting for an appointment to discuss DMT, I’m worried about any side effects with the treatments too, what treatment are you on? And how did you divided which to take?
Amy x
hi again amy
i chose copaxone when i was diagnosed in 2008.
it was really easy for me to fit in to my day and worked well for 6 years.
however i got bad lipotrophy which is a severe condition of the injection sites so i switched to tecfidera.
tecfidera is 2 tablets a day which is much more pleasant than daily injections.
i have to see an ms nurse every 3 months for blood tests because they are being very careful about my white blood cell count.
when you go for your appointment make sure you ask all the questions you need.
how much do you know already about what is on offer?
there are infusions - lemtrada and tysabri but these are the big guns and may not be offered as a first line treatment.
there are injections - rebif, avonex, copaxone.
then the tablets - tecfidera, gilenya, aubagio.
if you feel nervous ask someone to accompany you.
remember that it is YOUR decision.
if you can’t make that decision on the day, ask for more time to think it over.
good luck
carole x
Hi Amy, I’m at the same stage as you, awaiting to see the clinic team at Addenbrookes to decide on the drug treatment. I try and read up on all the different options but it seems once I’ve finished reading I’ve forgotten the whole lot. I’m going to the clinic with my husband and between us we will make the decision to what one suits me the best from the clinics advice. Carole has some really good advice and help. I was diagnosed a month ago but I have already got my head around it so don’t worry you will cope , you have already done the right thing by joining this site and talking to people , it really helps. If you can find someone that will listen to you then my best advice is talk endlessly to them about it , cry shout and say it’s unfair. Then once you have got all the initial hate for the illness out then start thinking how it affects your daily life and is there some little changes you can make to help you cope better. But the talking endlessly helps big time , I’m now not thinking about MS every second like I was in the beginning . Good luck
Dianne
Hi Dianne,
I’ve not really spoken about it that’s the thing. I don’t know what to ask or say. I’m just so confused. Eveytime I think about it I just want to cry, and some mad thoughts come into my head.
My appointment is going to be at Withington with Dr Roberts, I’ve tried to write down some questions but they all just feel stupid.
I suppose it doesn’t help that I’m actually having a relapse at the minute that seems to be lasts a lot longer than the others.
My biggest fear is contracting something else from the medication.
How are you finding it?
Amy. X
Hi CatwomanCarole58
You seem to be bit of an expect when it comes to DMTs. I have been diagnosed with MS about 6 months back but still awaiting to hear from my neuro as to what DMT they will put me on. Am I right to assume DMTs will not reverse your MS? Worst pain I have at present is with MS hug but not sure again if DMTs are of much help in this respect.
Thx
Hi Amy, I’m 26 with ms and I was diagnosed 10 years ago.
id always be willing to chat.
Ross
Hi,
I was diagnosed at 26 after a terrible relapse 2 years ago.
After the shock I changed everything in my life to be as healthy as possible. Before diagnosis I was a social smoker, drank quite a lot and ate only reasonably healthily. Now I eat very healthily (all in the bounds of ‘normal’), get drunk only occasionally (fun!) and exercise a lot and I’m currently training for the Great North Run.
I’m lucky in that I’ve had no relapses in nearly 2 years and I believe all those changes have really made a difference. I found focusing on overall health to be as fit as I can otherwise really helped take my mind off the negatives. I would be happy to share all my MS focused diet and exercise changes if you’re interested, but I should say I also found this quest for knowledge was part of the process of coming to terms with it.
For me being diagnosed with MS has made me really start to take all lifes opportunities whenever they come and LIVE way more than I ever would of.
My brain isn’t healthy, but the outlook and perspective on life generated by it are all much improved!
I hope you find peace with it soon and come back fighting.
Message me anytime if you need to chat.
Luke
Hi
I am also newly diagnosed. Day 10 from onset of symptoms, I’m lost in limbo trying to be positive in front of my family but inside I’m terrified I’m not going to get my mobility back. Today I have received my appointment with neurologist on the 7th June until then i wait. Its the fear of the unknown which scares me.
Would really appreciate others experiences.
Thank you
Hi Amy
Just wanted to say hi, offer you an ear and share my experience.
I’m a 45 year old lady with no previous medical history working full time with a grown up family. I’ve just been diagnosed with RRMS. I like you, feel stuck in limbo and just want to hear others talk about their experiences.
I’ve come home from hospital following MRI, lumber puncture then blood patch to correct post LP headaches.
This is day 10 for me since the start of my journey and onset of symptoms.
I started with pins and needles in my toes this has now spread through both legs up to my waist including my groin and bottom ( not a pretty thought , apologies). The feelings in my feet and legs range from a tight, burning, freezing and electric shock sensation and I am only just able to climb stairs by clinging to the banisters. Bladder has developed a life of its own either lazy or over active. I have weird altered sensation in my right face and heavy head feeling.
I’ve been reassured these symptoms will improve and I’ve had a 3 day course of steroids. I have a neurologist appt on the 7th June to discuss plan treatments etc.
Lisa x
Hi Folks
Yes at the outset of diagnosis there can be a void period of not not knowing what is going on with treatments. At my last GP visit, I had a consultation with a doctor whom I had not before encountered previously within my practise but whom has a very good reputation on the the grapevine amongst other attending patients.
I now know the reason why as they were excellent and informed me the lack of movement on treatments of my MS, which has been diagnosed about 6 months back, was due to the fact that the neurologist’s team were awaiting the results of further tests to assumedly monitor progression of the MS before deciding on a course of treatment; this was reassuring to an extent.
Just a few days back I had another follow-up with my neurologist who informed me recent MRIs showed my condition has not progressed and they were now working on the basis I am suffering from RRMS (by the way I have never had a lumbar puncture and my MS diagnosis has been through MRI). I informed my neurologist I was now accepting of this and was being positive going forward but wanted to enquire if any medications would be helpful to alleviate some of the lower back pain and pins and needles in legs I am having (from MS Hug?).
In particular I had suggested Tecfidera which apparently would also of help to the psoriasis I also suffer from and like MS is also an auto immune condition. Disappointedly there reply was, I am not an expert per se in drug treatments, you will probably know as much, and thus I will refer you to another specialist in that area. I asked how long the waiting list will be for that-there reply could be up to 6 months. They also informed me as they queried if my back pain was even directly attributed to MS.
This was far from the ideal response I was hoping for but I suppose they do not want to commit to any medications in case I am set out on the wrong course of treatment. They did recommend Vitamin D supplements which supposedly can be of help in the regeneration of myelin lost on nerve coverings caused by MS. Also I am having an appointment next week with their MS nurse, whom like all specialist nurses, can apparently be of more help to MS sufferers than actual neurologists.
Apologies if I am coming across as being somewhat despondent. I am from a biochemist and pharmaceutical background and thus familiar with medical conditions and there treatments but I am likewise no expert. My partner thinks I have lost the plot and the whole thing is getting to me but I have always been a get up and go individual who likes to be always on the move and get things done.
With the acute problems in the NHS I think my pushy attitude is of no harm. I encourage other sufferers to be likewise; however also best to remember there is always someone a lot less worse off than ourselves.
Regards
Hello,
As I’m also in the nearly/newly diagnosed bucket and this thread is about sharing experiences I thought I’d chip in.
I’m 36 years old. At the end of Feb I developed numb toes in my left foot. In a couple of days I had the same sensation in my groin. I was otherwise completely well, fit and healthy and thought I’d pinched a sciatic nerve at the gym. I looked up stretches for this and convinced myself I had something called caude equine (a medical emergency which requires immediate surgery). I called 111 (my boyfriend thought I was a crazy hypochondriac of the highest order) and was told to go to A&E where I was admitted overnight for an emergency MRI of my lower spine first thing in the morning. The MRI showed I did not have caude equine - but that I did have two “T-2 hyperintensities suggestive of demyelination”.
I was able to get a private referral to a neurologist the following week - and he ordered a further MRI of the full CNS with contrast. A few days later I was told that I had numerous lesions in my brain (inc. dawsons fingers), brain stem and all down my spine and was referred to an MS specialist neurologist - who confirmed I met the diagnostic criteria of MS - but left me with a formal diagnosis of CIS pending our next appointment and a further scan (next month - 3 months after the first) and a referral back to him for treatment through his NHS practice.
My initial reaction was utter horror - I immediately saw the worst emotional, physical and financial future for myself. I asked my boyfriend to take his house off the market (he is selling it to move in with me and ultimately buy a new property together) as I didn’t want to ruin his future too. People with MS were simply not something I could relate to myself and my circumstances.
Whilst it is still very early days, I’m now training myself to see that MS isn’t the beast it once was.
(1) MRIs only became widely used in the 1980s - before then it was very hard to understand the disease and its progression in order to be able to treat it. Increased use of MRIs has led to better understanding, research and innovation in the creation of DMTS.
(2) The DMTs are still relatively new (the more effective ones in particular) - and the consensus on early treatment of MS with DMTs is in its infancy. This change in approach to treatment should have a significant effect on disease progression over time and help movethe needle on some of the scarier stats about EDSS scores in our favour
(3) The DMTs are scary - but they can and do work - and there are proven results over time (e.g. 10 year lemtrada results / results of the original campath trails (Google search David’s Campath Story))
(4) There are drugs to help manage relapses and symptoms (5 days of steroids completely fixed my numbness - and no obvious side effects)
(5) There are other things you can do to help manage your bodies ability to deal with MS - sensible diet, supplements, exercise, cognitive skills, mindfulness, sleeping patterns etc (although never feel guilty about your MS - these are ieas for sensible living and nothing more). These can help you feel like you are “doing” something rather than allowing MS to happen to you
(6) When you start looking (on here; on shift MS etc) it is easy to find people you can relate to with MS - including young, fit active, positive people starting jobs, getting married and having families. Finding these people has helped me start to realise that having MS doesn’t mean an end to your dreams - just a need to think flexibly about how you achieve them
(7) There are worse things than needing a rollator/wheelchair. The thought horrifies me still (one of my main hobbies is rambling/long distance walking) - but it looks as though there are some pretty snazzy models on the market and there are some pretty amazing, brave and funny people who use them who regularly post here
(8) MS is a battle - and it is for you to decide whether you want to face it head on or try to live your life as best you can and just hope that the worst of battle scars pass you by. It is a personal choice. As benign MS can only be diagnosed in hindsight, and there is still a risk of progression - and as my CNS is already showing numerous signs of the conflict (even if my lesions are, mercifully “inelegant” to date) - I want to hit it hard and fast with the strongest treatments I can (and my neuro has confirmed he will support lemtrada as a first line DMT if my MRI next month shows I am “active”).
I’m finding the hardest thing at the moment the wait. I just want to get on and get treated before a relapse that is more severe than a few numb toes. I know I have been lucky to date (both with symptoms and my ability to progress the diagnosis so quickly through work medical cover).
The conversations my neuro has asked my boyfriend and I to have about children have also been hard (I’m 36 - tick tock). We’ve had non-commital conversations for 3 years. Trying to expedite this with all MS has to throw into the mix isn’t easy (but we’ve agreed to push on for treatment - and then re-consider post lemtrada when we know how I have responded).
I’ve told very few people (immediate family, two friends and my personal trainer (we have introduced boxing to my work outs - good for fitness, cognition and anger!)). Frequently think about telling work (or at least my immediate boss) - possibly will do after the next MRI when treatment plans are more landed. Generally want to understand a bit more for MS and what it means for me before I have to deal with other peoples reactions.
Apologies - I seem to have written a book
Keep well xxx
Hi Amy, how you holding up ?, have your symptoms eased , changed or still the same ?. I have found this week to be one of the hardest with regards to the varying symptoms and coming to realise I’m not as strong as I was but hopefully next week I will be strong again. After reading other people stories on here I’m going to try and be good and be more heathy. I will admit last week even though I ate healthy I did drink and the eat naughty in the evening after feeling sorry for myself as I was unable to do anything in the evening as my feet swollen , legs busy with pins and needles and my wrists and hands are so heavy and weak so I sit and sulk with a nice glass of red or two and any chocolate I can find ( luckily my daughter had left over Easter egg !!!). Anyway I’ve got to get my head around being healthy and exercising as I know I will be a lot happier and slimmer for the summer, maybe we could try getting healthy together !. Here’s hoping you have a good week ahead
Dianne
Hi Katy, thanks for your reply to my other post. I just wondered, if you don’t mind me asking…what were the conversations you had to have about kids? Obviously it’s my husband that has MS, not me but our consultant didn’t talk to us about any implications. Thanks. LH. X
Hello,
The reason my neurologist wanted me to think about whether we wanted children is because of the impact on choice of DMT. There are some DMTs which, although not strictly recommended, it is possible to continue with whilst conceiving if your neuro approves (e.g. some of the mildly effective injectables). There are some DMTs which you must not be on whilst conceiving (e.g. some of the tablets) and there are others you have to “wash out of your system” before conceiving (e.g. tysabri). And there is Lemtrada - which allows you to get pregnant 4 months after the last round of infusions. Pregnancy may also impact relapses (less likely to relapse whilst you are pregnant; more likely to after giving birth) - and it may be difficult to get steroid treatment for relapses whilst pregnant (and there may be considerations for the birth itself - although mercifully epidurals etc still seem to be an option!). My understanding is that these considerations are only relevant where the Mum-to-be has MS (and so any desire for children shouldn’t impact your husbands choice of DMT etc).
There are other points to consider though - which may be as relevant to your situation as they are to mine. There is the risk of passing on MS to your child. This is a relatively small risk (1:50 I think) - and by the time our children are grown up hopefully they will have found a cure (especially given the great leaps forward made over recent years). There is the risk of being a disabled parent - and what this could mean for the home I would want to create for my child. In the earlier years, there is the risk that MS fatigue may mean the burden of being new parents falls more on my boyfriend. There is the risk that my MS may mean I have to stop work - and what this would mean for us as a young family. We are in a fortunate position financially at the moment, but I know my boyfriend is keen for early retirement/leaving his job in the city and this may not be possible with a family to support if I am also no longer working.
But there are also all the potential rewards that being a parent could bring… Ultimately Richard and I have decided that the key question is whether we want children or not. Something we’ve still not landed on - and I’m nervous of making a decision either way with the new MS diagnosis hanging over my head. We’ve decided the key for me is getting on teh treatment I want as soon as possible - and I’m keen for lemtrada. If 16 months down the line, when I’ve had my two rounds of infusions and let it clear my body, I’m happy that I have my MS under a reasonable degree of control, we’ll re-visit the conversation then. Although I am 36 now (tick tock tick tock).
Hope at least some of that is helpful. FYI - MS Trust has some great materials on issues to consider when family planning with MS. Another site which is very useful is Shift: MS - there are a few good posts on there on this topic.
xxx
Katy, thank you so much for your detailed reply. You seem to have a real handle on all the facts, figures and details already. I’ve spent a lot of time on the MS Society website as well as others but some things still seem unclear. I think we are probably in a very similar position with regards to children. We’ve been putting it off (we were only married last year), and we are enjoying being in a position in our lives where we are financially strong and able to enjoy our freedom. The MS diagnosis has slightly impacted our carefree attitude we’ve been enjoying though especially as we relocated last year and we’re now living away from both our families and additional support. I’ve always been less keen on having children anyway, I’ve never felt maternal or a desire to be a mother and hubby is aware of this. I guess it’s just something we’ll look at down the line but I really appreciate your input. Xx
Not too sure about having a handle on anything yet, but think I’m a bit of a control freak by nature - and this whole situation has sparked my in- built need to try and control the process as best I can (with waiting times and the uncertainty inherent in the disease this is impossible I know, but retreating into the adage “knowledge is power” and trying to do something to get a handle on this makes me feel calmer).
Hope you and your hubby get some answers and progress towards treatment. Please stay in contact - it sounds as though we are in similar places and, finding people you can relate to managing this situation, is half the battle in coming to terms with it yourself. Xxx
Hi everyone,
Thank you for all of your comments! It really helps listening to other people’s stories.
I had a call yesterday to tell me I had an appointment on Tuesday to see the neurologist and his ms nurses.
Is there any useful questions people have asked?
Im actually so much more scared than I was before!
Thanks, x
Hello Amy
Sorry - just seen your final post. Was your appointment today? If so, hope it went well and you got the info you are after?
If it is not, have a think about what scares you the most and use that to drive your questions. Areas to cover may be:
(i) your MRI/diagnosis - get him to explain it so you understand your scans and symptoms
(ii) symptom management (if you have any on-going symptoms you need help with)
(iii) DMTs -what is available to you, how effective those DMTs are, how are they taken, what are the side effects, what is the timing for receiving treatment, what does the neuro recommend etc? If you are interested, whether there are any trails that may be relevant/helpful for you to consider participating in.
(iv) other things you can do to look after yourself (diet/supplements/exercise etc).
(v) any questions you may have about starting a family following the diagnosis
(vi) any questions about other things you may want to do but aren’t sure whether you should (e.g. gym routine /training for a marathon etc)
(vii) next steps - further tests/appointments (inc with the MS nurses or neuro team or for any other treatments you may be proscribed for symtoms) - who is responsible for arranging the,/what is the timing?
(viii) what should you do if you think you are having a relapse/ change in symptoms?
(ix) if you have any questions about informing the DVLA etc
Hope that helps. Am sure others will have more nuanced questions!
K xx
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