Last reply 3 months ago
Young, newly diagnosed please help

Hi,
I have recently been diagnosed with MS about 3 weeks ago. At the moment I’m trying hard to stay positive as I’ve hesrd negative comments from people that I should live my life before it’s too late etc. Unfortunatly my MS is really active so I have been given a choice of lemtrada or Tysabri? I’m struggling which one to pick as they have such bad side effects.
Is anyone able to give me their experience of both treatments positive and negatives?
Anything that’s helped them in terms of diet and excersise? I used to run 5k every day, before I was diagnoised now whenever I run I get extremely bad burning legs and lower back pain.
I’m worried about the Thyroid problems that lemtrada gives as I don’t want to put on weight and I also have a blood clotting problem.
I’d love to speak to someone around my age too 20-30? And hear you experiences as in yet to find someone in this category but any advice anyone any age is willing to give would be a big help.
I feel quite lonely and vulnerable at the moment due to numbness in my leg and struggling to walk, not many people understand MS as it is an invisible illness.
Thank you in advance!

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vixen
7 months ago

Hello lovely, and welcome. I’m afraid I’m not in your age group but there are lots on here who are. I was diagnosed last year and completely understand how you are feeling. It probably took a year to feel recovered, not just physically but mentally and emotionally too. But in that year, I’ve gotten to grips and turned my life around, including losing over 20pounds. Anything is possible, but it’s going to take time and you need to address things one step at a time. Your post raises lots of issues and you will need to work out a course for each of them to follow.

My top tips: allow yourself however much time you need to let things unfold. Do whatever it takes to get you through this phase. Things are rough now but I promise it will get better. Avoid Google as no one controls the information you may find. Stress is a major player in causing problems, exacerbations and flare ups, and I would never have believed that had I not seen how stress now has a big impact on me in many ways. Accept whatever help and support is offered to you. Just take time to find out how you feel about things as the process settles for you. At the moment, you are struggling to run, so just don’t – for now. Is your blood clotting problem ITP?

Lastly, I don’t think anyone would argue with the fact that the MS world is on the brink of major breakthroughs that wouldn’t have seemed possible even a decade ago. The medication I take -Tecfidera- is hopefully slowing the rate of progression and relapses by 50 percent . Again, 10years again the UK there was no such drug. Have faith, know you’re not alone, keep posting and asking questions, and be strong! Take care x


edmontonalberta
7 months ago

@world25

Everyone should always live their life before it is too late – everyone!

My younger sister Denise was one of the last polio babies – the doctors tried to convince my Mom to give her up so the government could raise her – Mom refused. After years of challenges including the doctors slicing a wedge into her shin bone to straighten her leg out… My sister has traveled the world including a year crossing Australia; she is presently vacationing in Mexico.

My first wife died from Scleroderma on a family vacation 24 years ago. She & I traveled everywhere – she was loved & adored until she took her last breath. She died happy & fulfilled. And yes MS is giving me problems but who cares? I have great friends & family; overall life is good…

Nobody knows the future; nobody. Except that there will be challenges.


tomlev
7 months ago

Hey, you need to talk to me lol,
Diagnosed 4 years ago, 30 yrs old married etc…. it’s not great but! It’s not all bad!!! xxxxxxxxxxx – (Phone number removed!)

 

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Exchange personal information by Personal Message, to ensure privacy. 😉 **

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Anonymous
7 months ago

Hi there. I have just joined this tonight as i thought it would be nice to speak with other people who understand. Sorry to hear about your diagnosis, I completely understand how you must be feeling. I am 31 and I was diagnosed in August 2016, I actually can’t believe it has been that long ago and how I have came to terms with it. My symptoms started at the end of 2015 and I had similar symptoms to yourself, I was struggling to walk on one leg and I had numbness traveling all over my body, very scary.
I then just had the numbness in my hands and then only in my fingertips, I thought I would be left with this permanently but luckily it went away at the end of 2016 and I have been ok since. I am not taking any medication as I was also worried about the side effects. I was prescribed vitamin D tablets that I take daily but other than that I just try to focus on my diet and staying positive. I also take omega 3 capsules as I have read there is a link between omega 3 and ms, I also try to eat plenty of fish.
I am trying to take natural remedies rather than taking medication at the moment which seems to be working for me and hopefully will continue.
Everyone is different and you will find what works for you.
You just have to take care of yourself and listen to your body and try not to get too stressed.
Sorry for ranting on! Lol
Hope this helps. 🙂


tomlev
7 months ago

stumbler ‘admin’ its the one time i felt i could offer help to a friend who spoke of similar experiences To myself, i do appreciate giving your number out online holds is risks and i am aware, however the situation we are all in holds greater risk, do PM me on how to PM others cheers x


world25
7 months ago

Thanks everyone for your comments everyone I will reply to them all, I really appreciate it. Tom I have private messaged you


lilbird
7 months ago

Hi @world25

Sorry to hear you’re having such a scary time. It’s really early days for you so just take your time to process all thats happening & try not to stress (as much as its possible) The diagnosis is a lot to take on in itself & suddenly having to make important decisions about treatments is not easy! A good way to find info about any treatments is to use the search option here on shift & you’ll get lots of conversations about each topic, it leads to a lot of reading but helps to start putting things like scary side effects into perspective.

I was given an open option of a number of treatments & in the end pushed for lemtrada. I weighed the list of unnerving potential side effects against the potential things that ms could throw at me & that helped me make the decision. It’s not easy but there’s so much great information & personal experience documented on this site. It’s an invaluable resource & a great place to vent stress, meet new people & have a laugh or a cry depending on what kind of day you’re having 😊

There’s plenty of people who understand exactly what you’re going through right here day & night so please don’t feel lonely, we’re here when you need us x


sarahshift
7 months ago

Hi @world25

I’m pleased you’ve reached out to the community for help. You’ve come to the right place for supportive, positive and helpful MSers. I just wanted to mention about our Buddy Network – https://shift.ms/find-a-buddy

We can link you with a Buddy of a similar age to you if you like? If you’re interested please fill in the form or you can drop me a message – [email protected].

Thanks
Sarah
(community coordinator)


world25
7 months ago

@vixen

Thank you for your message I appreciate it. Well done on loosing 20 pounds, did you find this helped? .

Thanks for your top tips they are very helpful, I find stress too makes my symptoms worse, is there anything that you do to stop yourself feeling stressed?
My blood clotting problem is Factor V liden but I know lamtrada is a different version of blood clotting that you mentioned.

Do you have any bad side effects when you first started taking you medication as this may be one I look Into.? Thank you for your kind words it’s been really helpful and supportive


vixen
7 months ago

Hello, Tecfidera is working well for me, although it doesn’t suit every one. I decided on that because it best suits my lifestyle.

After my initial relapse when everything started, I felt so washed out and ill afterwards. Really fatigued, no strength, miserable, frequent visits to toilet. I became so miserable whilst recovering and awaiting diagnosis that I put on tons of weight. I was addicted to chocolate and comfort food and pretty much spent 9 months gaining weight. Once I felt better in summer, I got the strength so commit to a Keto diet and can’t tell you how amazing I feel for losing the weight. I didn’t increase my exercise either so have done well.

As time has gone on I have become more skilled at weeding out stress. I don’t get caught up in things I know will upset me and I hand out with people who I know are caring and stable influences! I don’t put myself under pressure to prove things to myself and I take every opportunity to rest, even if I feel great.

As I said originally, to arrive at this place probs took a year. But in a weird way I feel stronger for going through this journey and working out what sort of a person I am. You will find a way for yourself that is right for you. Be kind to yourself, don’t take risks, keep your mind busy, count your blessings as often as possible. Love to you x


brando
7 months ago

with MS being so fresh it can be terrifying, knowing that a lot of things may have to change but not always. Give yourself sometime to take in the situation its not all over now.

I was diagnosed 10+ years ago the few things I remember are that you can’t just give up I’m currently 24 and I feel like I have lived my life the best I can you just have to learn to manage things a bit better if you have symptoms at the current.

The exercise thing is a bit of a downer, try something else bike riding, swimming, boxing. One door closes doesn’t mean you still can’t achieve hat you want in life.

This forum is a great place but don’t be afraid to talk to close family or friends about it, we all need to vent and this illness can get the better of you sometimes so just take it easy. Hopefully this helps

Brando


californiadreamin
7 months ago

@world25 its pretty common for young people with MS to have it very active. As you are young you are also likely to have more recovery and benefit from medication then most that are older. I would encourage you to get onto a DMT as soon as possible and it should do wonders for you.

Were you tested for JCV virus? If you are JCV negative you should consider going on Tysabri quickly and with confidence as its a high effective drug and there are minimal side effects. If you are JCV positive the side effects are rare but in those rare cases life threatening and bad. However the risk of that is very low in the beginning and goes up over time. It is something that can be tested for to some extent.

So in your shoes I would base my decision on my JCV status. Consider in addition to that programs like OMS (Overcoming multiple sclerosis). Its is very likely to help in a number of ways the will compliment your DMT.

Stay positive, its a different world for MS then 20 years ago, but do consider going quickly to treatment.


emlaloula
7 months ago

WARNING: long post.

Hi, I was diagnosed as highly active in 2016 aged 25.

I was offfered 2 options. Start on Lemtrada or a less effective drug with the likelihood I’d need to ‘step up’ to a more effective one.
I was lucky in a way that I had 1 yr in ‘MS limbo’ after my first MRI. I had lots of time to look at treatments, being sure I had MS.

I found this MS trust guide really helpful.
When I was offered Lemtrada I’d read about, but didn’t think I’d be offered it. My last MRI said otherwise.

https://www.mstrust.org.uk/understanding-ms/ms-symptoms-and-treatments/ms-decisions

If you’ve not looked at it before, check it out. It let’s you compare many things, from effectiveness down to how often you need monitoring for side effects.

I had My 1st Lemtrada course in Nov 2016. I’ve not relapsed since. Considering I’d been relapsing every 2 to 3 months (don’t ask) I’d say that was pretty good. It may not work for everyone but for me it did.

I have not had any significant side effects so far apart from temporary ones linked to the drug going in to my system.
I may at some point in the future but I’m confident knowing I’m checked by blood and urine tests every month and told signs and symptoms to look out for.

Ultimately it’s your decision. What’s right for one person will not be right for another. If you have any questions I can help with feel free to ask away xx


emlaloula
7 months ago

To add to my horrendously long post.
Tysabri wouldn’t be ideal for me. I’m under 2 Neurologists (don’t ask 😂)
My local hosp doesn’t offer lem or Tysabri so it would mean a train and tube ride into London every month. Not practical for me.


kitty369
7 months ago

Welcome and hope u r getting your head around things…..

Your still you and as for the MS u just need to find the best approach for u. I was diagnosed in May 2017 and am still working things out, but lifestyle management is a key one. Limit stress, learn your limits and when u can’t do something just find something else u can do! I have found there r so many more things I am exploring that I wouldn’t have made/ had time for before.

As for treatment I have chosen lemtrada and I start next week. I was initially concerned about the side effect and risk profile and choose tecfidera (which didn’t agree with me) . Remember that u r well monitored on lemtrada and thyroid problems r treatable.

Take some time to work things through and don’t read the doom and gloom, u r still u.

There are some great people on here with so so so much knowledge and experience use them!!


world25
7 months ago

Hi @lambo

Thank you for your comment sorry it’s taken so long to get back to you trying to reply one at a time, but obviously have a lot on at the moment.

Do you find you have any replapses with not taking any drugs? And what natural remedies do you take? I am taking Vit D, but don’t find this makes much of a difference to me. I am also worried about side effects of drugs but I think in the long run it looks like it will help and a lot of people have said your monitored.


world25
7 months ago

@kity369

Thanks for your post. Id love to know how you get on with lemtrada, I’m currently waiting to see if I’m allowed it due to my blood clotting problem which I know the drug causes.

This site is very helpful and a lot of people I’ve spoke to so far seem really posistive and helpful. Thank you.


Anonymous
7 months ago

Hi @world25

I take vitamins, omega 3,evening primrose, vitamin d. I also take acidophilus pills which are good for your gut.
I have read up on a lot of natural ways to help ms and I happy sticking to this at the moment. I like to include omega 3, kale, spinach, etc in my diet. Also chai seeds on my salads, etc…
I also like to bath in magnesium flakes or epson salts as they have so many benefits, relax tired aching muscle and also have so many benefits as it soaks through your skin and helps so many things internally, one being reducing inflammation.
I also try to stay as positive as I can and do things that I enjoy and relax me, i go for regular massages which help me de stress.
I have been symptom free and doing really well, somewhere I never thought I would be when this all began. Maybe it’s down to what I am doing or maybe it’s just luck but I always think if I had started taking meds and started feeling like this then I would think the meds are working when really this would have happened anyway.
I will see how I get on at my next appointment.
I hope you are ok.
Just take some time to let it settle in first and then you will decide what is best for you. X


fingersandtoes
7 months ago

For exercise I can really recommend Pilates. It will keep your body strong and your back may even improve.

I’ve started swimming as cross training for running, and I’ve found I enjoy it a lot more than I thought. It’s actually quite meditative as I can have headphones on, all you can do in the pool is focus on what you’re doing. Then there’s the repetitive action and the weightlessness…

I was offered Lemtrada but opted for Tecfidera, which is going well so far. Just be reassured that on Lemtrada you will be very closely monitored so if there are thyroid issues or anything else it will be picked up quickly. I have a friend on it who is in your age bracket and is about to join here – hopefully she’ll find this or I’ll remember to point it out to her! I find shift.ms to be a really positive place, everyone is supportive no matter what your age.

I think someone recommended MS Decisions – that’s actually what my consultant said to check before making a decision. That’s certainly been a quicker way to go about it than waiting for my nurse appointment – I skipped straight to the education session and have been on Tec for about 5 weeks now. My nurse consultant appointment is next week! I just wanted to DO something about it rather than spend weeks worrying. Better to find out if I was going to get side effects and deal with it than stress about it. I also fell down the black hole of Facebook groups where I found a lot more negativity than here.

Good luck!


lightning87
3 months ago

Hey!! I’m 31 and was diagnosed last week. I think my MS nurse this thinking Tecfidera for me but waiting for the appointment with him at end of July.

No words of wisdom apart from I totally get what you mean by people being negative. I had someone tell me they were devastated for me – don’t be. Things could be worse!

Keep your chin up and remember that there are so many developments coming on for MS. In the meantime, happy to chat anytime xx

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