@21112009

Last reply

21112009

No treatment

Please, if you've chosen not to follow any long term treatment ever since you've been diagnosed, tell me how your symptoms have developed? And please, share your motivation for not subscribing to it. Do you regret it? Have you taken this decision with your neurologist or by yourself? I have been diagnosed in 2009 ans I haven't suffered major replapsing episodes, so I've decided (on my own, the doctors didn't know what to advise me, given my rare symptoms) not to go with treatment. But this year has proved to be a more difficult one for me and I am wondering what if I should start one.. What scares me are the side effects. Also, if you take a look at some studies, treatment vs no treatment, it's not so much difference between the frequency of accute episodes...

potter

@potter

I started a DMD when I was first diagnosed, I had two aunts who had MS before they had any DMD's. I had first hand knowledge of what they went through with their progression of MS. I decided I would do or try anything to slow this disease down. I have been on two different DMD's and have had side effects but my body also got use to the medicine eventually. I had Rebif shots for five years until I had problems with my skin, I am going on my third year taking Tecfidera. I had problems with it at first but my system got use to it, I haven't had any relapses since I have been on DMD's. If you decide to start a DMD we can help you deal with the side effects. The progression of MS is scarier to me than any drug. Potter

Monica2015

@Monica2015

21-11.2009, take a glance at my profile when you have free moment. I largely refrained from the drug route until October last year, having been dx 11.5 years ago. The synopsis therein will hopefully fully illustrate my beliefs then, and the subsequent drastic and contrasting change of thinking thereafter. Feel free to contact me if further questions.

VanessaJ

@VanessaJ

@monica2015 -my situation is exactly the same as yours -diagnosed 12 years ago and neuro felt it benign as had optic neuritis 20 years earlier. Now am wondering if I should ask for meds as having a bit of trouble with my feet! Let me know what you decide. Vanessa x

Sonia1984

@Sonia1984

I jumped on medication as soon as it was offered, mind you I had Ms issues since I was a teenager. The thing with Ms is you can go 2,5,10 plus years with minor issues then bam! The side effects were an after thought compared to how debilitating the disease is, it took me right out and I ended up in the hospital. Don't wait on the meds they can make all the difference if you do relapse while on them. Just because minor stuff happens is not an assurance that nothing major ever will. Don't wait and see do everything you can to delay progression!

Ashory

@Ashory

Either way you're gambling. I think I've read more stories about people who didn't treat until they were unfortunate enough to suffer a severe and long lasting relapse. It wasn't until that time that they wanted to hit it with guns blazing but if there's one thing we do know, there is a very small chance of reversing damage that has been done and hitting it too late, no matter how hard, isn't going to fix the damage that was done whilst you weren't treating it. Taking drugs may come with side effects but for the most part they are manageable. I'm in a position where at 27 my brain and spine just don't have the space for more lesions. I've "known" I had MS for many years but was consistently misdiagnosed and eventually stopped complaining to the Dr. So in a sense I didn't have treatment for the past 9 years. I'm extremely upset at my 18, 23 and 26 year old self for not pushing this harder but how was I to know? I'd jump at the chance to go back in time at least 30 something lesions ago and start drugs to hopefully slow the progression. Maybe I'd still be able to walk on my own properly or maybe I wouldnt but at least I could be saying I did everything I could at the time to help slow it and I wouldn't be beating myself up over it now. Have you had any recent MRI's? Are you aware of how fast this is progressing for you? I've only ever had two MRI's one in 2007 where I had 3 lesions in my brain and none in my spine. I was fortunate enough as you were to not suffer a significant relapse for many many years but when I did in 2015 it was my walking that went. Again I was brushed off as crazy for mentioning MS. For my most recent relapse I've been in Australia and was lucky to have a GP that listened who got me to a neuro immediately. My 2016 MRI is riddled with lesions both in my brain and spine. My point is just because you are having no external symptoms it doesn't mean your body isn't destroying itself internally. I'd think long and hard about not wanting to treat with medication and what your reasoning is for it. if it's nothing more than fear of side effects than you need to consider the alternate outcome of what MS can do to you without treatment. To me both of these options are as scary as anything I've ever dreamed of but only one of them lets be at peace knowing I did absolutely everything I could to prolong my quality of life. At the end of the day you need to make a decision that you can be at peace with whether you're strolling along a beach or sitting in a wheelchair unable to care for yourself.

21112009

@21112009

Very hepful, you guys! Thank you soo much for telling your stories, I guess it will indeed make me think longer and harder at my decision. I have to say I am especially thankful to Ashory, you are totally right about the external symptoms meaning nothing if my body destroys itself from the inside. About the MRI, I just had one done for my cervix and spine end of April, I will see a specialist to compare it with the others I have done, I want to know if and how the disease progressed. Also, thanks dearly to monica2015, your life story was so emotional, so many relapses...WOW!!! 50+?!!! Really? And still you're optimist and having a great family! That's a winner! I've seen you were reluctant to treatment as well, but that you've finally took the decision to go with Lemtrada. I've seen Lemtrada has been the option many of people here have chosen. BTW, don't know if you've seen this vid, maybe you don't want to ser it, might be too strong for you, but I've seen this yesterday evening: https://youtu.be/XGV7fyW82lM - if you are emotional, do Not open this link https://youtu.be/lw-pVjlcZCA - this link is OK for your motivation, she talks serenely about her struggle This also helps in my case, I see this wonderful talented woman being confident she tries to overcome this awful disease (that's in the second link). Anyway, thank you all for sharing your thoughts on this, you're helping soooo much! I guess in my case, by now, I only ignored MS, thinking that if I don't have symptoms, it might not be as bad as it is said... Also, I haven't found the right doctor to feel like I can talk as a friend, to have that special connection...they were all pretty much indifferent. I am still looking for the right specialist. And this year has been a wake-up call for me: to take my MS for what it is, a seriously life threatening condition that can evolve all of a sudden into something very ugly, with no chance to go back. I will take myself a time of meditation and I'll think long and hard about what is probably my most important decision of my life. Thanks dearly! You bring a ray of sunshine in my struggle!

cameron

@cameron

It's not nice having to imagine yourself worse than you are, possibly unable to walk but I think we all need a reality check from time to time. As others have said, you would likely be thinking differently if the MS had thrown up serious problems. It's a bit like one of my family who had resisted giving up smoking when she knew she really ought to. It was just never the right time.... until, that is, the day when she found she couldn't swallow because of a lump in her throat. The doctor immediately sent her for a biopsy and she had fourteen days of hell before the result came through. Sitting in the surgery, the doc told her she'd been lucky this time because it was benign. But, he added, you do need to give up smoking. Her reply: 'I already have'. All her tobacco cravings had disappeared even before she'd had the biopsy! She'd never been as scared in her life - and has never smoked since. That's how I felt with the MS diagnosis and that's why I went on treatment a.s.a.p. xxx

Monica2015

@Monica2015

Hi, thank you for the kind sentiments. I believe my story serves to prove that our belief systems are not always compatible with our health interests. Due to recovering fully from each one of my numerous relapse previously, I had made the assumption that that pattern of recovery would continue if I simply adopted my own personal tried and tested methods. However, when an extreme and lengthy period of stress (my life is always stressful, but this one was totally beyond my norm), it was almost as though I had just been dx with rapidly evolving progressive MS, rather than the rapidly evolving RR version! I had to really dig deep and question myself and my hopes for the future, as they all appeared to disappearing in front of my very eyes, with my having zero control over this. My husband and son were taking holidays without me, I was becoming housebound, instead of having strong, toned muscles that I had worked tirelessly on in between relapses, they were atrophying at an alarming rate...in short, I was becoming a shadow physically of what I had been, although fortunately I was blessed that my cognitive functions were retained in their entirety. My formulae perfectly fine tuned over 10 years, comprising of diet, supplements, exercise, to, seemingly had no impact once the relentless tirade of relapses commenced at that particular juncture of extreme stress. Hence, my extensive research and major "U turn" in thinking, from zero drugs to the strongest, most efficacious drug available. I was not ever content to contemplate the alternatives seriously previously, but Lemtrada appealed to my logic and resonated with me, although I struggled with it for 2 months until I was absolutely resolute that I simply MUST receive it at any cost! I understand your reticence as your symptoms are more silent, and whilst my MRIs painted a dismal scene, I still believe and know that even be or two lesions situated in the "wrong" location can be the cause of paralysis etc. I hope my story illustrates that all can change in an instant and accumulative damage is more difficult to reverse, if at all. I do hope this assists! Will accept the friend request shortly.

Sewing-chick

@Sewing-chick

I wanted to tell you about my experience and suggest a different drug you might think about. I was diagnosed in 1999 but probably had MS for at least five years before that. I saw slowish but steady deterioration for the next seven or eight years. In 2007, I started going downhill a lot quicker and also having episodes that were more like relapses. They weren't very bad relapses, but I only got back a bit of the function I lost each time. I was offered the range of interferons available at the time but from my understanding at the time, they only reduced relapse rates. Since I thought they didn't slow progression, I didn't start a DMT then. By 2011, I was using one stick and had a lot of problems with bladder control. Late that year, I started on Tysabri, in the hopes of slowing down progression. I came off that at the end of 2015. By then my walking was very poor, and very slow. I was using two sticks or a walker indoors and a wheelchair or a mobility scooter outside. I thought about having Lemtrada, but this is not the only drug which offers hope of ending MS activity. I chose Cladribine over Lemtrada. With Cladribine, you have three injections over three days (outpatient, not staying overnight). You may have one, two or three more injections a month later. Then you have another set of injections a year later, and that is the end. Cladribine and Lemtrada both offer an end to MS, not treatment that goes on for ever and only offers to reduce disease activity. Cladribine does not lead to the thyroid problems that are often seen with Lemtrada. However, Cladribine is only on offer at Barts, because it is only licensed for treatment of MS in Australia (and Russia?). I have been impressed with the neurologist that I have seen at Barts (Dr Schmierer) - you might find he's the kind of doctor you want to see. If you want to read more about Cladribine, you can find information here http://multiple-sclerosis-research.blogspot.com/2016/01/suppose-there-was-therapy-for-all.html

amylee

@amylee

Hello, I had my first attack about four years ago. I wasn't diagnosed until my second attack which was about a year and a half after that. I was given information packs for three different injection treatments. It was such an overwhelming decision to make so soon after the diagnosis...about three minutes after being diagnosed...that I put the information next to my bed intending to read it and it has been there, mostly unread, ever since! It has been maybe two and a half years since that second attack/my diagnosis and I haven't decided against or for, I just haven't decided anything. That has been easy for me as since my recovery I have been well and so very rarely think about having MS and my future. However, the few times I have read various information online/in books/on forums/drug company websites I have been struck with the amount of side effects and long term complications that can come with medication for something that is not a cure. I think I am deep down scared that medication will 'rock the boat' whilst I am well hence my reluctance to start. I have always had a mistrust of medication and a fear that it will make me more unwell. I just want to enjoy being well after twice being so unwell. Everything points to better results from medication the sooner it is started so it could actually be that my indecision for over two years is the real threat to my long term risk. Its a very difficult decision to make and I'm sorry you are also having to go through it. I hope you find the right decision for you. Reading the above replies has woke me up to thinking this all through again. Its easy to fall asleep and live in the moment when its all going well.

Sewing-chick

@Sewing-chick

But now there may well be cures for MS. Cladribine and Lemtrada may be cures - the doctors are hopeful but will only be able to say for sure when people get to 15 or 20 years past treatment. I can't understand why anyone is going for an on-going, MS activity-reducing drug when they could be having something that might be a cure.

Monica2015

@Monica2015

@sewing-chick, I guess it's fear?! When did pro G recommend this treatment for you, and has it had a positive impact on your symptoms and progression? I would agree with you incidentally...!

Sewing-chick

@Sewing-chick

It was Klaus Schmierer that I saw. He recommended the treatment at the end of March, but I had to have a four week wash-out period after stopping Gilenya. So I had my first lot of Cladribine at the beginning of May - two weeks ago. I'd say I'm already a little bit better than I was - legs working a bit better, mainly. But I probably haven't even had the full first dose yet. I have to get a lymphocyte count done, four weeks after the first treatment. Depending on what that is, they'll give me more injections, the week after that.