Last reply 1 year ago
Please help…

Hello everyone. I am very new to this forum, this is actually my first post ever. The reason why I am here right now is because I have RRMS since 2014, I took Tecfidera, didn’t work, now I will probably start Lemtrada in a few months. I just had a very bad relapse a few weeks ago, sever vertigo and balance problems that lasted for about 2 weeks. It passed completely after taking steroids. The problem right now is that I have PTSD because I am very very scared of the possibility of the relapse coming back. I feel like I have been completely traumatised. I have fallen into a deep depression and I have this catastrophic view about everything in my life. I am so afraid of the side effects of Lemtrada but at the same time I never want to go through a relapse like the previous one again.

At the moment I feel like I am 23 and my life is over… that it’s never going to get better and that there is no point in living. I feel like I will never be able to have a normal life again and that whatever I do I will never be able to beat this. I feel like my own body turned against me… I am so scared..

I am sorry for this depressing post.. I am not normally like this but I have never experienced a relapse as bad as this one before and I really have a lot of trouble coping with life at the moment. I didn’t really know what to do except writing here..

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matic91
1 year ago

Hello vivy just dont panic and throw away your life beause you are scared. We are all scared of what may happen or not. You should concentrate and believe that a medication was designed/produced to help you. Did you had a positional vertigo? in that case you should do vestibular exercises. They helped me very very much after my first vertigo and hopefully my last one. So i know what you had to go through. I dont want to scare you but there will be bad and also several good things and moments on your MS path. You should really start enjoying the good moments which i think you currently have. The medicine is developing so there are new treatment options almost every year. And who knows maybe there will be a cure soon. 🙂
You made the first step by writing about you issues which is as far as im concerned more than most of the people are capable of. So my appreciation for that. 🙂 I was on Lemtrada and the first dose really almost cured me i could run, walk, jump, swim like a dolphin. 🙂
im not trying to convince you into anything, because in the end it is your decision. Just dont give up, because you are young and have a whole life before you that youll have to discover.


stumbler
1 year ago

Hi @vivy0511 , you did the right things by typing that summary of your present condition, both medical and emotional. It helps get things off your chest to enable you to start to see clearly again.

Everyone is worried about what may happen tomorrow. And, that’s everyone, not just us MSers. If we continue to fret about the future, we stop living in the present. And, that’s where we all are.

I can understand your emotional position and you do need to go and relay that to your GP. Yes, they may offer a course of anti-depressants, but that’s no sign of weakness on your part. It will just be to get you in a better frames of mind, to get things back in perspective.

Lemtrada is a powerful and scary drug, but so is the potential damage that MS can cause you. Lemtrada will give you hope for the future. You have age on your side and there’s no reason to think that this treatment would not leave your MS to become a distant memory.

So, tomorrow, arrange to see your GP and then you can start to take control.

@vivy0511 There is also the real possibilty that the MS itself is impacting your mood on top of everything else. The good thing with that is its also very likely to pass if it is, but getting medication is part of returning to your normal self.

Exercise has been shown to help with depression and my wife sees the impact on her mood when she does. It can be of all kinds of different forms, but consider seeing if you can tell if some moderate exercise for yourself can change your mood at all. Its at least an experiment worth trying on yourself.

Another thing we have found helpful is mindfulness (an app like headspace or something). The picture for my wife and I went from being in the middle of a storm, to being in a house looking at the storm outside. Storms are still there, but in one case we are just waiting for it to pass like it always does.

We are lucky to be in an age where you can almost surely have a hope of a bright future. There are now 16 approved drugs that all work well and they have all come out in the last 20 years. Given the amount of recovery you are getting with each relapse, just imagine what the future holds in the next 10 years? There are some great possible drugs in the pipeline right now.

I would recommend you consider looking into a website called overcomingms.org. Its full of hope and information. You took the first step in writing some of your thoughts down, maybe next is to take some time and really look at all the options and possibilities. My wife and I are of course sad about her diagnosis and all that it mean, but its a hopeful time. There may come a time when there is a lot less hope, but it seems for you that time is not now, it just maybe hard to see in the middle of the storm.


petlamb
1 year ago

Hey @vivy0511,

Sorry to hear about the upset and trauma you’ve recently been through. MS sucks. There’s great advice advice from the others above, so I’ll say just one thing.

Copy and paste your message on to a plain piece of paper and print ………………… don’t forget to take it with you to your Doctor’s appointment that you are going to make after reading this. We all need a little help sometimes, Lord knows I have over the years. This is your time to accept a little help.

You probably can’t see it right now but this is just a phase and you WILL come though it.

Suze xx


Anonymous
1 year ago

Hey @vivy0511

I am sorry to hear you are feeling this way just now. Relapses are scary, my last one was just over a year ago and yes at the time it was hard to imagine feeling normal again. But you know what things have improved for me and they will for you too. It sounds like the steroids have done their job and the fact that your symptoms have mostly cleared up is a great sign. DMDs are scary with all the side effects but they are a good way of taking back control. I’m not on Lemtrada myself but there have been loads of positive accounts of its effectiveness on here.

I guess you just need to go with what’s right for you.

Take Care
Avril xxx


vivy0511
1 year ago

@matic91, @stumbler, @californiadreamin, @petlamb, @avrilt thank you all so much for you support and kind words. I feel a bit better now and your comments were very helpful. I guess we all have our ups and downs and the occasional bump in the road. At the moment I just want my life to get back to normal, and I think (and hope) that Lemtrada will give me that.

x


lucyh
1 year ago

Dear @vivy0511

I am, along with the rest of the gang here, very sorry to hear you are so down.

You might want to take a look at Terry Wahl https://www.youtube.com/watch?v=KLjgBLwH3Wc . She is a doctor who suffers from MS, was wheelchair-bound and came up with Wahl’s Protocol, a diet for those with MS; she no longer uses her wheelchair. This Youtube talk (link above) is inspirational. The difference between this and the OMS diet is that she more-or-less tells you what to eat each day, although I think both orgs have similar ideas around healthy plant-based diets.

As with anything to do with MS, there is a company or organisation behind them, insisting that their way is the best. Some really are afraid of criticism. Perhaps it is best to listen to the hard science and your own instincts. For example, I’m skeptical of MS organisations that offer you the chance to run half-marathons/climb the Great Wall of China for them etc. without knowing what your health is like (fine if you are well enough for this and want to fund-raise).

So it is wonderful to come across a woman, such as Terry Wahl, who appears to know what she is talking about. It is awful to feel so bad…we’ve all been-there-and-done-that, but at the time it really does feel like it will never pass…it will.

Best wishes, take care, lucyh xx


molineux1047
1 year ago

Hi @vivy0511 I wrote this recently about my symptoms and decision to have Lemtrada. I had vertigo terribly too and it didnt respond to exercises or anything. This is my story and what my research of the net says about the potential side effects.

I think now they are pretty much 1 in 3 to have a thyroid problem, 1 in 30 to have ITP, and 0.03% chance to have good pastures disease. All can be treated when caught by the regular blood tests

My MS DMT Decision


lucy_blake
1 year ago

@vivy0511 I’m feeling very similar things to you at the moment. I’m going to see the specialist for the first time in the UK on Thursday. Although I’m mainly angry and I’m grieving for the life I thought I would have (I’m 10 years older than you) and got diagnosed last year and it was terrifying. You’re not alone in what you’re feeling. Thank you for posting and everyone else that has messaged. Glad I’m not the only one getting this way, my friends think I’m going crazy.


vivy0511
1 year ago

Dear @molineux1047, thank you for the link to your post, it was inspirational to read and some of your arguments really helped me feel better. How are you feeling now?


vivy0511
1 year ago

@lucy_blake I am really sorry to hear that you feel this way too. Please let me know if you need any guidance or help with the health care system in the UK. I know that personally i found it very confusing when I first came here and I had no one to guide me through it. And don’t worry, you are definitely not the only one feeling like this and you are not going crazy either.


molineux1047
1 year ago

@vivy0511 im alot better now. I just take stemetil anti sickness tablets if I feel sick which is rare now. I have my screening tests for Lemtrada tomorrow. Stay positive – life is still good 🙂


nutshell88
1 year ago

Hi
I got my first relapse in my eye in 2005
Didn’t expect something horrific like vertigo will make me fall on my knees when i tried pooring a cup of milk i cried all night with mum at bed and yes i was 22 yrs
I stopped wearing high heels since then still my balance is effected.
Ask your dr to test your walk
You are probably fine from it for a long while.
It never returned to me. But im imbalanced dnt let fear control your abilities like i did lol
And its indeed the worst of all symptom.


nutshell88
1 year ago

Btw bertigo started 2 years after i began taking interferron
That was the reason. Call me stupid but zi stopped the rebef and since then I only get minor replace once every year or 2 years
My advice you’re young for dangerous meds and keep in mind most if not all ms meds causes dizzeness.

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