rachaellouise 29/11/17
Last reply 6 months ago
Anyone chosen not to be on dmd?

Hi,

Has anyone chosen not to be on dmd s and if so how do you manage your condition without dmds ? My neurologist has not offered me them unless I have another relapse which I can see his way of thinking . Do any of you go against the neurologist and not take them and how do you manage ?

Rachael 😊😊

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edgarleroy
7 months ago

Doesn’t sound like you’re choosing anything. Treating early & effectively is favored now.


strictlysoca
7 months ago

If you are in the UK then the guidelines have changed and you should be offered a DMT and then you can decide if you want it. There are many people who don’t take them. I use diet, exercise and meditation and vitamin d going outside every day as well as doing something creative to manage stress to try to optimise brain health. BUT I also demand a DMT and keep up with what’s new with ms treatment . Hit MS with both barrels!


nutshell88
7 months ago

Hi
First five years I didn’t know I have MS.
I was at highschool age 17 2005 my parents didnt say anything but optic nerve inflamation. They treated me with cortizon the neuro didnt tell too. It was a new illness in Saudi you can say.
But I did research andin 2010 i realised it. And requestedtreatment I got my second relapse with it. It was rebef. I traveled to the US NYU hospital.
There was a prof he said if i didnt switch from interferron to tysabri i’ll be bed bound by the end of 2011.
He made me cry that night. And
When I do I become more determined on doing how I choose.
I stopped the Rebef since early 2011.

My condition isnt the same as before daignose. But better than with the rebef hehe.
I can carry however I like in 2012 I traveled to the uk alone and managed to get a nice hotel flat with a cute view at the meadows. I was working and studying English same time there. My neuro there nearly lost her mind trying to put me on any treatment. But I took them and put them on the shelf.
Returned bk alone in the airplane to qatar then by car with my family bk to my city and I’m working now too.
I dont care what science says sometime if I wasnt convinced if these treatments protect me from getting worse at age 40 why do they mke me more exposed to relapses now. And it doesnt make any sense to me to add toxic on my wounds and ruin another stystem by manipulating it. Nervous system is enough cooked already. Sorry for typing a lot I hope it makes any sense. But I need to be fair and clarify one thing. MS caused an atrophy in my brain. But just like the first five yrs of my daignosis. I never had any serious relapse since 2010 and if any relapse happened it fixes itself withen 2 weeks.

Be safe
Reem


stumbler
7 months ago

@rachaellouise , it’s at times like this that you wish you had a crystal ball.

Alas you haven’t and the future course of your MS is unpredictable.

DMTs are prescribed to reduce the severity and frequency of relapses. Any relapses will cause further damage to your Central Nervous System (CNS), which may, or may not, be recoverable and may further impact your quality of life.

So, should you or shouldn’t you? Well, you could start them now and then stop them at some time in the future.

DMTs are a sort of insurance. And, we all dislike paying the premiums, but we hope we don’t need to make a claim!

It’s a conundrum for sure. As Dirty Harry used to say, “Do you feel lucky………?” ! 😕


Anonymous
7 months ago

Hey @rachellouise

I didn’t take a DMD when I was first diagnosed. I then had sensory problems in my arm, then my face and after that I ended up with double vision. This was all within 8 months and I was told by y Neuro that basically I needed to start a DMD if I wanted to stop my MS progressing so fast. I started on Tysabri and so far this has been doing the job and keeping things at bay.

But unfortunately I was told in March that I would always have issues with my eyes now. So I guess I’m saying I should have startrd sooner.

But you have to make the right decision for you based on your circumstances.All DMDs come with some risk you just need to decide if they are worth it. My MS is highly active so I needed to do something and maybe I should have started treatment sooner.

Take care


hmcampos
7 months ago

Numbers (are worth what they are worth) say that it reduces relapses. In theory the sooner you start fewer relapses you will have and, therefore, less disability accumulated.

It is, in any case, a personal decision. I wish, much like @avrilt, I had started sooner.

Be strong.
H


stumbler
7 months ago

rachaellouise
7 months ago

Hi guys.

This is my dilemma . I’m going to be open with you, I’m not getting any younger and I’ve no children . I am 35 . So this is my dilemma try for kids or go on drugs. Thing is when you go on drugs like these it takes time to work out of your system . So I’m stook !
At the same time I’m not feeling that well , I’m new to diagnosis and I’m worried about being a mum with ms if that may happen .
I feel stook and I don’t know what to do ! I think I’m having a relapse or flare up and decisions seem more difficult at this time as I’m feeling poo😞


stumbler
7 months ago

@rachaellouise , Lemtrada is a bit more “family planning friendly”. The drug itself does not stay in your body for much more than 6 weeks, so provides some flexibility.

Don’t let MS get in the way of your aspirations.

And, stop worrying/stressing about all this. It’s making everything worse.


nutshell88
7 months ago

Me too raechel
The only thing I’m worried about is how would it effect me if I had kids in the future.
I’m still single but ai wish I’d ve able to have kids.
I’m 30 years old now. I was daignosed when I was 17. MS is damaging silently and god knows what it might
be hiding or me in the future.


marcyg921
7 months ago

I went with Lemtrada because when I got diagnosed all I could think about is how I wanted to put this episode of my life behind me and move on. I didn’t want to spend the rest of my life worrying about whether or not something else could go wrong and Lemtrada has helped me ease my mind with that case because its almost been a year since I had round 1 and nothing new has gone wrong. You can still have children with Lemtrada, I’m part of a Facebook group that discusses this treatment and people on there have had kids after treatment.


seanachai
7 months ago

You really should consider DMDs or maybe an alt approach like Coimbra Protocol, requires serious R&D…


stephz
7 months ago

Hi Rachael,

@rachaellouise I totally get your dilemma – I’m 34 and was diagnosed last year and of the first things my neuro asked was if we planned to have kids. For different reasons I/we decided to wait with kids if ever and I’m starting Tecfidera next week. If you’re comfortable with your MS nurse or neuro you should really discuss this with them to get all the information you can to make a decision – that part I’m afraid is up to – remember there is no right or wrong answer just an informed decision that works for you

Regarding DMT and treatment this is a good report: https://www.msbrainhealth.org/


bok2bjan
7 months ago

@rachaellouise – I am a bit of a rare bird on this. The research clearly points to DMTs reducing flairs – however it also points to the fact that with or without them – the disease marches on inside the CNS in ways as yet not understood – and in the majority of cases (NOT all) – goes on to develop SPMS. So the drugs do reduce the flairs – but also cause side effects (often not realized until later). And even with that reduced numbe of flairs (and lesions), it doesn’t actually stop the damage being done. They don’t fully understand what structures are being damaged, altho there are theories.

Many believe an inflammatory process is still going on at a deeper cellular level – which causes accumulated disability regardless of lesion load. The bulk of the treatment trials have focused on stopping the relapses and reducing the lesions. But some day they will truly understand what is causing the disability – not just the relapses.

I have had hardly any relapses since diagnosis. I had several before – but not after. Except for foot drop, which I didn’t even know was from MS for years – I hardly ever thought about my MS – it was a background dx. But still the disability was accumulating and hit me pretty hard. It’s thought I have had it for almost 25 years – but my sx were blamed on other diseases. Anyway – I am glad I didn’t take the DMDs. They would have been given credit for my lack of relapses – yet wouldn’t have stopped the disability. I certainly don’t envy newly dx patients! There are more therapies available – and more push to take them (altho I was pushed too).

After the current drugs have been used for 29 years – we’ll have more data available to analyze their efficacy. But they all focus on the same ultimate goal – stopping relapses. Some won’t go on to develop many – nor any disability. Others will have a moderate course with little disability and so on. But regardless of treatment – the statistics say that a person who has had MS for 10 to 20 years, will go on to develop SPMS and disability.

So much research is still needed. It’s a shame, but a fact of life, that research is VERY expensive, and usually carried out with pharmaceutical money. It’s still valuable – but we need research into exactly what is going on on a cellular level in the CNS, irrespective of lesion activity. I would like to try LDN fir symptoms – but my neuro refuses, siting lack of peer review studies. That’s bc of the cost of LDN – it’s cheep.

Blessings to you, and I hope you can make your decision and have peace. One thing most will tell you – while pregnant – MS seems to take a holiday. So you could certainly decide after you have the kids. One option anyway.


potter
7 months ago

I started on DMT’s as soon as I was diagnosed, I had two aunts with MS. One aunt was in assisted living by the time she was 32, she died at age 50 from brain atrophy. They didn’t have any treatments yet when she was diagnosed. She was treated with steroids when she had a relapse. I wanted to slow this disease down as much as possible, I am 65 and still walking, the DMT’s have messed up my thyroid but compared to what could have happened it is a small price to pay. I was older when I was diagnosed but the doctors thought I had if or many years. You could do the Lemtrada first and get that out of the way. Or you can have your children first, MS is usually quiet during pregnancy because of the pregnancy hormone. You would need someone to help watch your children if you go for the Lemtrada treatment later. Potter


arknat
7 months ago

bok2bjan, agree to most of what you’re saying. But as @stumbler points out from the links, DMTs prolong time for further deterioration. Of course there’s a tradeoff with the side effects.

Maybe still early yet but I was wondering if there’s any data of Lemtrada or other fixed duration similar therapies with preventing/further delaying SPMS activity ?


joh73
7 months ago

I Chose not to take DMTs as I didn’t want to medicate the side effects caused by these drugs.

I am on The Wahls Protocol and manage symptoms with diet, exercise, sleep and lifestyle changes. No gluten or dairy, 3 cups of leafy greens, 3 cups coloured veg and 3 cups of sulphur rich veg per day. Plus meat/fish. I feel so much better and have lots of energy again.


rachaellouise
6 months ago

@joh73 – hi I added you as a friend. I have also chosen the Whals Protocol and been following it since August time . When you re read you see things you’ve missed .
I am handling the diet side pretty well. Although even with those food I think my body does not take to them all. Would need to eliminate to work this out.
I’m doing reasonably well with the exercise trying to build up my strength so can do more cardio.
The stress – well failing miserably at the moment . Try to meditate – finding it hard to relax
The sleep – also failing a bit as insomnia has set in the. I’ve had a few nights where burning kept me awake.
I have a cold and dr has prescribed antibiotics so on them the joys !
Trying to eat well and take my vitamins and take priobotics

What sort of meat do you have ? Do you have it everyday and is it organic grass fed etc ?
Do you eat fish ?

I am on level 2 of whals my body wasn’t ready for level 3 yet , I’ve tried . I’m on Whal paleo not the plus

Also the things that worry me are red meat and coconut milk/ oil – still on fence as oms is totally anti Saturated fats and meat ! What do you think ?

Anyway nice to meet you
I got diagnosed in July and not dmd but it wasn’t offered to me as he said wait and see if have another relapse.

Rachael


nutshell88
6 months ago

my first neuro was syrin and never told me i have ms neither did my parents so i never take dmd’s i did had a relaps year after i was off them till today and my state is perfect apart from mri results. so 14 yrs off dmt’s


rachaellouise
6 months ago

What’s your secret @nutshell88 your positive about it . So is it just not stressing. ? Xx


nutshell88
6 months ago

well Rachel I’ve been to the uk my partner was Scottish he was depressed most of the time never believed in a god with all due respect to all but he effected my faith for a while. but since he was depressed I was doing everything for him shopping buying new clothes games ect and I was studying and working. before going to uk i’ve never heard the word deppressed in saudi arabia. when he told me before i go and stay with him i thought i will cheer him up change his life to the better but he was ill. felt lucky im still not disabled back safe to my family now finished every duty of each part of life i studied volunteered worked now and planning to have a full time job,
the real bless is my family and frankly i rather not to say but my faith gives me strength too.

i remember in 2010 sadly with my partner i lost this believe i used to suffer with vertigo in 2010 it was raining i prayed for god please dont let this illness take my youth i’m still young i was crying tbh.
ever since i never got any relapse. and i also stopped meds and said god i accept whatever you bring to me but be be merciful with me.
but the day i passed out bcuz of fever and was hospitilise in royal infirmary scotland i remembered my prayer they gave up on meds said im too skinny to take any more meds so i cried again and said god who created me save me one last time and i’ll return bk home
so i did whether that was the reason or not im not ready to repeat my mistakes and run away from an illness its in my mind and i better treat my mind well to keep it sealed hehe

i accept lil pain here and there got double vision maybe 5 in my life times but it goes in 2 weeks and btw when i remember it it comes lol as if it reads my mind lets hope not this time tho

besides im well educated . and im the elder sister cant be the weaker can i 😃


nutshell88
6 months ago

no one i know saudi suffers depression i know u wouldnt believe me but its just a word we hear in movies. not sure y maybe finance my parent takes care of us all and their parents did same they pay all bills food ect till we get married thats why married ppl here keep in touch with their parents so i dont have to worry about money i work to break routine thats all not for money but as for my younger brother who is married he works to take care of his wife in saudi law is islamic law which forces men to take care of their wives forever medical finance everything and their kids till married. i use the money i get to buy beauty things dresses expensive bags which is kinda foolish i know young siss just got me d&g crossbody bag so classy 😀 so childish i know and i’ll save the rest to get me a car because if i let my dad pays for it he will choose it 👿 and i’d like to choose it myself since they just allowed us to drive. and im telling u the only reason they didnt accept that befotr is because their streets are wicked lol stop my rambling plz im trying to look for a clear reason for ur anser to i told u my life story Dx be safe Raechellousie x


seanachai
6 months ago

Hi RL – not sure how much use this is to you..

I am about to make a decision re DMD vs alt… my pref is alt, specifically the Coimbra Protocol… I am in discussions with Neuro on how or if we can work this…. its difficult due to lack of official support in the UK.

If this alt did not exist, then personally I think DMDs would be a no brainer… all things considered.


rachaellouise
6 months ago

@seanachai – I have heard about the protocol . I think you need to work with a doctor experienced in the protocol . Let me know if you find one as I have heard some good results on this protocol and would try it if could find a doctor.

We are all in different stages of our lives , stages with ms and different priorities . Their is no right or wrong answer. You have to do what’s best for you and where you are at in life . Give everything careful logical consideration and some time then make a decision otherwise you stay in limbo land and I think that’s the worst place to be.


seanachai
6 months ago

@rachaellouise, still undertaking a lot of research my side, I am trying to understand the mechanics as much as possible.

Your right no docs in the UK running/ monitoring the CP and may have to explore international options.

I speak to my Neuro very early January, its a new chap who seems to very close to R&D and trials etc. I going to see where I can get with him on this… key part of CP is having the progress monitored and especially the bloods, not sure who would fund it.

This is my primary choice at the moment, but I have to wait on confirmation of my diag i.e. RRMS/PPMS etc. with the later potentially have a longer diag. time; incidentally from what I understand PPMS also has less success on the CP depending on type of PPMS, I am still exploring the last point.

Will keep you posted


nutshell88
6 months ago

hi again
its the first time I know about this CP.
atm I think I think I am 0.0 on EDSS Scale on 1,0 since I’m not balanced with stairs but walking running is perfect.
I wouldn’t mind giving this CP a try if its how I read isn’t it high dose of vitamin D or am I mistaken..

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