Last reply 5 months ago
Is there a chance to live a normal life?

Hi all,
I was diagnosed last summer and after 4 months put on Copaxone.
I am now on month nr 6, so on the month when it’s supposed to start becoming effective.

So far except for fatigue, and daily transient hand numbness and daily transient ‘eye flashes’ (don’t know how to scientifically describe those), I am feeling ok.

My question is, is there a chance I continue like this, or a relapse is actually a 100% chance scenario?

I know nobody can answer this question with certainty, and that each case is different, but I wanted to ask you (especially people who have had MS for years):
Is it possible that many years pass with no relapse? Can I have hope?

Sometimes I get very panicky about the future, and I feel that I sort of need a ‘good case scenario’ to hold on. If there is one of course.

Thank you beforehand for any replies.

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vixen
6 months ago

Hello @miapi. I was diagnosed last year too so I’m afraid I’m not a long timer. But I have, or had the same questions as you. There are people out there who haven’t had a relapse for more than a decade, and others who have had two or three a year. We are fortunate in that our DMTs have only been around for a relatively short time and so we are really lucky compared to people diagnosed 30 years ago. My biggest challenge has been trying to understand The New Normal and with that, what to expect. While trying to do that, I have really focused on modifying lifestyle and diet and in that sense, I have created my own new normal, regardless of the MS. Does that make sense? When thinking about the future, I just hope that the rate of developments in research and treatment will keep going at this current accelerated rate. I’m not pinning my hopes on a cure or anything, but that life will become more, not less manageable as time marches on. Does that make sense? Take care, stay strong and keep posting! X


grandma
6 months ago

Dear Misapi Im an old hand, welcome and you’ve found us early. When I was diagnosed 24 years ago I spent 3 months in bed not knowing if I’d ever get up again. Things slowly got better and then I had another relapse and was back where I started! Long story short, a year later Beta Interferon came out, I was on the original trial, there was no alternative unlike today, I was first told that rrms would become 2pms in 10-15 years, it took 23 years. I have just been swapped to Tecfidera, a life without weekly injections, what joy! I am a grandma now. Saw my daughter through female madness horse when she was a teenager, taught my grandaughter to swim, read, etc., the legs have now gone, but I still drive, caravan etc., I usually relapsed once every 3 years instead of once every 3 months so I thought Beta Inferon was the best thing since sliced bread. But things have changed, and slowly ov er the years so haveI. I had a wheelchair from the hospital 23 years ago, it went it wen’t rusty in the garage, but I have now just been given an electric one and Mr council has just put me a through lift in so I can now go upstairs to bed!

The eye twitching I get quite often, but only I can feel it, it is not visible unless they sit and stare hard very annoying but it hasn’t stopped me doing anything.

The upshot of all this, everyone is different, stressing about things only makes ms worse only you know what’s right for you, don’t jump in and make unnecessary changes only you know what’s right for you. Don’t rush it, and take time for you😍


miapi
6 months ago

Thank you for your reply @vixen.
May I ask what kind of lifestyle and diet changes have you implemented?

I try to eat as healthy as I can, however I still eat beef, dairy and sugary things. I have read online that some people are constricting themselves from those, trying to ‘keep inflammation down’. Is that how it works?

I am very prone to anxiety, and if I have to feel guilty every time I had a piece of candy I think it will drive me crazy. My dr has said that ‘there is not a specific MS diet to follow, just try and stay healthy’.

Have you visited a nutritionist for example?

Let me know if any of these questions are too personal, I don’t know anyone with MS in rea life, so I trying to figure out ‘what are others like me doing’ and if I m doing things ‘right’ : s

Thanks again


miapi
6 months ago

@grandma Thanks a lot for your reply.

I will be honest, even though you sound like a very content and positive person, some of the things that you have mentioned in your response are upsetting to me.

I guess, that even after all these months I still have not come to terms with my diagnosis.

In any case, you do sound as a person that has been having a somewhat normal and fulfilling life.


chezy17
6 months ago

Hey Miapi.

Define what’s normal, think it’s over rated lol! I do live a said normal life if that’s what ya call it. I go to work, I have fun with with my munchkins, I see my friends and I pretty much do what I did before. I think if I’ve kept the kids alive, it’s a good day 😂😂😂!
I take time for me more now though, when I am able to and I’m less focused on the things that aren’t important.
I don’t follow a proper diet but I did cut out gluten and take vit d, and duvet and film days are amazing for the days I feel tired. Kids get to chill and have film snacks so always a hit. My relapses seem to happen every couple of years and always sensory but I’ve only been diagnosed properly for over a year. I decided then and there I wasn’t going to let it win even when I’ve got pins and needles in my head 😂😂😂!

Keep smiling and just living how you want to live, we only get one 😊.


potter
6 months ago

I was diagnosed 10 years ago and had my first relapse right before Christmas, I was on Rebif for five years and and Tecfidera for 5 years. You shouldn’t let the idea of someone in their 60’s getting a lift or a wheelchair upset you. We have many friends that have those and they don’t even have MS. I had MS undiagnosed for 10 or 15 years, I am 65 and still walking and getting up and down the stairs. Going on a 8 day vacation in Yellowstone National Park. You need to decide to live the best life you can every day. Life happens. Potter


daybyday
6 months ago

I was diagnosed last summer too, so I can’t speak from years of treatment, but we do suspect that I went undiagnosed for years, with my first likely flare in 2010. However, in my case, my mother was diagnosed 35 years ago. So I have my experience and also hers. Both RRMS.

My mother was diagnosed pre-DMTs, and she chose to not use any of them. She has had exacerbations and assorted things have gotten worse over time, but she has not had an active flare/new lesion in 20 years. I hope I have that luck. But I believe I had roughly one flare each year during 2010-2016, pre-diagnosis.

Meanwhile, I am due soon for my first set of post-diagnosis MRIs and we’ll see how things look. I’ve been on Ocrevus for four months, having made the decision to go on something, and after discussing with doctors and nurse about what might be appropriate. I’m more or less okay, minimally affected right now, but there was quite the collection of lesions on my brain MRI in particular, so I am treating in the hopes of stabilizing.

MS is so different for everyone. “Normal life” is going to be what you make of it. I can’t forget that MS is part of my life now, as my hand has altered sensation, and other minor reminders exist (and I do have a fatigue day here or there), but I have not changed my life or plans in any significant way. What “normal” and “okay” look like may change someday but I will adapt if the need arises. Like my mother has.

It takes time to sort out your thoughts and feelings and understanding about what this all means to you and for you. And those are all things to tend to. My life with a mother who has RRMS my whole life has made my own process easier, and that is something most don’t have. Take your time. This journey is going to last a while, so no rush in sorting it all (and it might not even stay sorted, so you may need to process again. Listen to your body, your feelings, your thoughts, always) but support and community like this one will help.


aabreu
6 months ago

I don’t know about going back to normal. But we have good drugs now that can put you into a remission like state. It may be too soon say for you. If your next MRI isn’t clean, I would fully expect to be put on something more effective. That is me.

For me, the MS is progressing quickly.
I have some things I wish I did different.
1.). Not having a regular doctor to complain about new symptoms. Or not contacting the MS nurse to complain about my new symptoms. This entire time I could have been on steroids to help when new things appear.

2.). Not having a neurologist that specializes in MS. You are on a first line treatment. Very safe drug. No risks with that drug. Most generic Neurologist that dont specialize in MS like to play it safe. On the flip side, it isn’t as effective. I wish I was put on Tysabri looking back. But my neuro kept telling me it was not for someone like me. Whatever that means. I would seek out a specialist from day one.


miapi
6 months ago

@chezy17 @potter @daybyday
Thank you very much for your replies. They did give me some hope, and sometimes that’s all one needs at a certain moment of time 🙂

@aabreu I do have an MS specialist as my dr, and she thinks that Copaxone is ok for me..
I am also a bit scared to go on an immunosuppressant with uncertain side effects at the moment, as my life is not really settled (I have to share a house for example). However I will do it in a heartbeat if I have to in order to give myself the best chances possible. But the dr has to prescribe it I can’t decide on it just by myself..

Anyhow, I will try to remain strong, vigilant, and positive

Thanks again for all your kind replies x


aabreu
6 months ago

Hi @miapi
Even MS specialist have different philosophies.
Some prescribe to the escalation model of therapy. Others do not. They believe in hitting the disease hard. It’s all what you are comfortable with.

God speed


miapi
6 months ago

@aabreu

Trust me I have brought up the ‘hitting hard’ perspective not to one neuro, but to several. Two of them in the Netherlands and the rest (more than 3) in Greece. All of them said that ‘it’s too early’ to go to a more effective treatment.

If you ask me personally, as I read a lot about MS almost daily, I see great value in the ‘hitting hard from the start’ method, especially since my first attack was very debilitating. I can see how people say ‘the new normal’, and I guess I will have to adapt should I have to face it, however I was very disabled for almost a month and my eyes were worthless when MS hit. So we’re not talking about a nuisance, but more like a life-changing disability.

All I m trying to say is: I saw right from the start what MS can do, that is why I get a bit too overworked with whether I m truly doing the best I can. On the other hand, I unfortunately need a doctors cooperation and professional experience in order to go to a stronger drug. Am I missing something?

In any case, I do hope that things start getting a bit clearer regarding what should and what should not be done per patient case. Doctors around the world should start reaching a consensus on a common treatment algorithm (based of course on individual patient characteristics) so that any disrepancies among treatment strategies get minimised and treatment potential gets maximised for each one of us..
I feel that sometimes one has to depend too much on personal dr judgement, while a very specific protocol should exist.


californiadreamin
6 months ago

@miapi For the most part there is a set of algorithms that are becoming pretty standard. However, each involves a decision by patients on the risk they want to take. The drugs have gotten better and more effective. The side effects are better understood on the older ones. Its sometimes a personal choice on how aggressive you want to be to risk the side effects or in the cases of some newer drugs risk the unknown long term effects. There are a couple tests like JCV that make it an easy choice if you should consider Tysabri or not.

In terms of lifestyle changes I would strong recommend overcomingms.org as a starting point (and the book is available on amazon and also for free in the UK). Its a good start to just see whats overall available and its full of hope. However, it requires some action to make the changes.

Given how serious your onset was, it seems being aggressive makes sense. for drugs thats basically Lemtrada, Tysabri, Ocrevus (Rituxmaub as well), cladribine for the most effective ones.

Factors that could impact some of the above include your JCV status, if you plan on having kids in the future, availability of medication in your country, risk of a new drug, and your willingness to accept secondary auto immunity risk.

Depending on the answers to those types questions, it pretty much organizes the drug in priority order. In the US here we have insurance thats provided by companies. Since the medication is expensive, if the MS was going to stop someone from working, I would lean towards a one time medication, because it might be hard to get more treatments later.

I would surely reading the OMS book because it is very possible to go without relapses or progression. At minimum improve your odds. My wife has been been diagnosed since Oct 2016 and is doing well but its a tough disease and you never know whats coming.


miapi
6 months ago

@californiadreaming
Thanks for your reply and your points. I am aware of the OMS book (I have downloaded it), but so far I ve only taken a quick look at it. Maybe it’s time to give it a proper read.

Regarding medication, as I mentioned before, I don’t think I have the choice for all these big guns at the moment. That is because my lesion load was low. However, how I see it, prognosis based on where the lesions are located, along with some other factors (type of symptoms etc) should also be incorporated in a treatment plan. It seems to be based too much on nr of lesions/nr of relapses.

Maybe I am overreacting, but this is only because from what I have been told/read, I don’t have a favourable prognosis.

To them it’s ‘a new relapse’, to me is ‘I can’t use my eyes any more’. So as you can understand I am really dreading a relapse. Not that any other type of relapses are fun. But I really don’t want to lose my eyes.

I know I m getting too personal with all this, but I find that it helps me share it here, with people that are a bit more educated about what MS is.

I am meeting my neurologist end of April and I will rediscuss the medication choice. I saw that your wife is on Tecfidera, which I was also offered initially. I didn’t opt for it back then as I wasn’t educated on MS enough in order to make an informed choice. Is it a difficult drug? What are your personal experiences with it?


aabreu
6 months ago

@miapi
Good luck at your neuro appt. I wish you the best. You are very articulate. I think you will be fine in expressing your concerns to the doctor. Hopefully they are responsive.


miapi
6 months ago

@aabreu Thanks again for your response, I wish the best to you too : )


tessa
6 months ago

Hi @miapi…..well I am one of the real old timers here…I was diagnosed when I was 16 in 1965….none of the modern drugs and no MRI. I was totally paralysed from the waist down for over 6months …I was given a drug called ACTH gel..for a few weeks it is still sometimes used apparently …I made a total and complete recovery …no relapses no brain fog no eye problems…nothing at all. Forgot about it..lived my life married had two children etc ..but in the last 7or so years my mobility has become a problem…right leg and foot drop.
Had first mri which just showed some past damage …nothing much else. Apparently I now have SPMS…according to Prof G…very unusual and interesting case. Not sure what to make of that !
So there really are no norms are there and that is what makes it so difficult to find a cure or cause. Is it the drugs that are causing remission or would there have been remission without them….as in my case
In my opinion they aren’t even scratching the surface yet.
So try to live your life for the day while you can…
Tessa


miapi
6 months ago

@tessa I am sorry to hear about your current issues, but I am glad to hear that for years you had been doing ok.

I personally hope that I eventually am able to switch to at least Cladribine, which looks like a promising drug.. Until then I will just try to live my life and to stay as much updated on the facts as I can.


alexthebrave
6 months ago

Hi @miapi,

I was also diagnosed last summer and have been experiencing many of the same worries about relapses that you are having.

I know that the Overcoming MS lifestyle has been mentioned but I feel that it has had a positive effect on my experience so far.

The meditation aspect of the lifestyle helps with the anxiety of not knowing and the diet part although is different than how most people eat, I was able to adapt pretty quickly. I think the most important part of following OMS closely is that it is backed by years of science, and it gives me the feeling of control which lessens my anxiety. As for recipes, I have been vegetarian for nearly 10 years so I have lots of OMS friendly recipes you need a few ideas. 🙂 As for meditation, I like the Headspace and also simple habit app.

I am also on Copaxone currently and it is going well so far. I have had one relapse, since I started which me neuro thinks may have been a pseudo exacerbation caused by a bladder infection.

I am in the US so I am not sure about the UK but I asked for a referral when I was first diagnosed to go to Boston to see a specialist at a larger hospital. I wanted a second opinion, so if you want to be on a stronger medication then a second opinion could be the right route?

I also struggling with the idea of a new normal. I don’t know if this is unique to others but I spend time allowing myself to grieve my former ‘ normal’ self. For example, the other night my right foot especially but lower legs were so cold it hurt so I thought a shower might help, well, the hot water burned my skin like a thousand suns! I am being dramatic but it was not a reaction that I had ever experienced. So, I let myself cry, not because of the pain but because of the shock of a new symptom or reaction. I think being upset, frustrated and angry is okay because it will help us reach a state of acceptance. Pretending to be normal makes it worse for me so if I have to rest after my errands instead of diving into the next chore, I let my husband know that I need time. I am working on not feeling guilty about it, and slowly I am accepting that my body has different needs now.

Wishing you the best, let me know what you think about the OMS book!

Best,
Alex


miapi
5 months ago

Hello @alexthebrave, and thanks a lot for your response.

I am going to start reading the OMS book asap. I have only read the vit D + Omega 3 part so far and I have been taking both supplements daily.
I also have, and occasionally use both of the apps that you mentioned : )

Regarding a second opinion, I have already gotten it (I live in the Netherlands btw), and the verdict was the same, that Copaxone is ok for me. One of the things I’m being told about it is that it’s the only drug that it’s approved for pregnancy and that it’s very safe in general. I’m not planning to get pregnant any time soon, but I guess I m being told this because of my age (28).

While efficacy sounds like one of the strongest points of a drug, being mostly ok at the moment, I also do appreciate being able to stay on a low side effect drug for the time being. Of course time will tell, and I’ prepared to take action should things change.

I completely agree with you on the acceptance part. We do need to go through all the different stages and I think it’s ok to also be negative and ‘complainy’ sometimes. I also feel guilty often for not being better at accepting/handling things, but I know that’s not good, so I’m trying to be kinder to myself.
Also, I m sorry to hear about the bad shower experience, as well as the fatigue. I also have the latter, it comes in waves that last for some days and then they go away.

I hope that it goes well for both of us. I feel that if we try to stay on top of the MS with regular check ups and by keeping ourselves informed, then at least we will be doing everything we can to give ourselves a good chance. Of course we also need some luck on top of it, but this idea of ‘at least you’re doing the best you can’ has been a bit helpful throughout all this. : )

Wishing you the best!


vixen
5 months ago

Hello again @miapi, how are you doing today?

In answer to your question about nutrition (sorry for delay!) when I first became ill before diagnosis and for a year after, I put on weight through comfort eating and starting Tecfidera. I felt consigned to carrying this extra weight with no energy to fight it. Anyways, six months ago I started a Keto diet – high fat, low carb – and have lost almost two stone and feel great, more mentally than physically. It takes some commitment, but out of it has come an overturn of my lifelong addiction to crisps and chocolate. That’s nothing short of a miracle!

I no longer over exert myself to prove I can still do things. Balance in every way has become really important. I am still working full time but am exploring pulling back a bit. Not that I can’t work, but I want to commit to spending more time relaxing at home. Of course, having an amazingly supportive husband and being the parent of a grown up daughter is a huge advantage.

I think about the future, but focus much more on the present and the next month or two. Because I’m on Tec I have blood tests every three months so that helps me see that I’m doing OK. Oh, and I am heartened by the positive breakthrough MS this week about a new treatment for SPMS and the stem cell advances. Glad you’ve joined the MS Warriors! X

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