Last reply 3 months ago
Freshie

Hi guys!

I just got diagnosed with ms and would like to hear from your experience with ms drugs. My doctor suggested lemtrada the most. I am not really a medication person at all but if it’s something that helps me on the long run I would def try it. I know every person is different but I would just like to know in general how you guys went with treatments etc.

A bit about myself: I am 25 years old, residing in Australia and originally from Germany. 3 years ago I had my first symptoms. It started with blurry visions to the point I could not see at all and then it went on with my speech and half of my face was paralised. That happened in Germany. I got plasmapheresis treatment and they disgnosed me with ADEM. Now in Australia after 3 years I had symptoms in my right leg and got diagnosed with ms. I also have bladder issues. Now I need to make a decision on how I want to go from here.
Would be really happy to hear from guys.

Cheers
Jana ๐Ÿ™‚

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antonettefick
5 months ago

Hey Jana.. I hope that the new diagnosis is welcomed rather than scary… My diagnosis change my life as I finally had answers.. Hope you feel the same… Sorry to hear about the bladder issues..

I am on Capoxone daily injections, but busy migrating to the Gilenya clone… My medz are not effective anymore.. In RSA where I live, we cannot choose our medication, the Neuro chooses for you and you go with the plan…

I really hope the medication is effective for you, I was diagnosed 3 years ago and this is my third treatment…

My only wish for you would have been if you could have been a lot older before the diagnosis, it’s difficult.. I was 30 when i was diagnosed… It sucks when you want to be active and social and your body does not play well with that idea..

Please ask more if you want to know more, people here are so awesome and so supportive… I have had great help in the past on this site.. Ask and you will be answered!

Happy Easter MS’ers


studentandms
5 months ago

Hi there, I got diagnosed in Feb this year and am 22. My neurologist suggested that I go for lemtrada to hit it hard and because my MS is quite active (2 relapses in 8 months). I am due to start lemtrada in 2 weeks.

There are obviously risks associated with it and I don’t like taking medication but I decided that the risks outweighed the benefits. I’d personally rather have an intense treatment now and improve my quality of life rather than later down the line have a more debilitating ms.

Best wishes!


janabananaaa
5 months ago

Thank you both for your answers! ๐Ÿ™‚

It def is a little relieve to finally know why my body goes weird sometimes and I can finally do something about it ๐Ÿ™‚ I have always been eating healthy and really active and yoga is def good for my mind as well ๐Ÿ™‚
My doctor listed a couple of different options also capoxone but he said the problem he sees is that you get reminded of it everyday.. how do u feel with that and what kind of symptoms do you experience? Sorry to hear that you have to go with the plan and your neuro decides :/ in the end it’s your body and you should be the one making decisions. Hope you can change your meds!

My doctor said the same thing I should hit it hard with lemtrada and be good in the long run. I think I will give it a try and see how I go. A lot of people develop thyroid desease and other autoimmune diseases but everything will be monitored to avoid serious things and to make sure your body gets everything needed.
Hope the treatment goes well for you and you won’t get any relapses! ๐Ÿ™‚
I will probably start in about 6 weeks. It’s scary but exciting at the same time.


tracyd
5 months ago

@janabananaaa

Welcome to the nicest place to have MS on ‘tinterwebs ๐Ÿ™‚ xx

I get what you say about not being a ‘meds’ person, I hate having to take stuff, the remembering of it, the side effects of it being ongoing. The thing about Lem that worked for me is it’s 5 days then nothing for a year and then 3 days – unless you relapse again … nothing. For me it was the most ‘med free’ option of them all.

If it helps to understand then the last 3 years of my life has been published in real time here : http://www.tracyslemtradajourney.co.uk

There’s a better edited, and spell checked version of the first year linked on my profile with all proceeds coming directly here to Shift as it’s a charity.

You have a friend request, if you need someone to talk to, I’m happy to share contact details xxx


janabananaaa
5 months ago

@tracyd

Thank you for your response! ๐Ÿ™‚

The lemtrada option does sound like the most “med free” option and I really like that you don’t have to inject yourself or take a pill everyday and constantly get reminded of it.
I will def check out your journey thank you for sharing this xx


makkymee
5 months ago

Hi @janabananaaa ……….Great Username ๐Ÿ˜๐Ÿ˜๐Ÿ˜

I hope you’re doing ok after your diagnosis and finding lots of support. This site is great and so many people to advise and help.

I was diagnosed in 2010 and after 7 years I finally decided to start Cladribine. I had my injections in December and am due to go for the next batch in November if all blood test results are ok. I’ve heard a lot of people go on Lemtrada so I hope it helps and the side effects aren’t too bad.

Makky


edgarleroy
5 months ago

I’ve had cladribine and really like it. Easy to tolerate, convenient, safe & effective. Only a few doses over 1 year.


janabananaaa
5 months ago

@makkymee

Thanks for your reply! ๐Ÿ™‚

Have you taken any medications during those 7 years?
I haven’t heard of Cladribine yet.. I don’t think my doctor has mentioned it but I will ask him about it. Hope it goes well for you so far!! ๐Ÿ™‚

I am still in the process of making my mind up as there are so many different opinions out there and the fact that there are different guidelines in Germany (that’s where I’m from) and Australia (that’s where I live) doesn’t help me haha.

@edgarleroy

Great that you like your medication! ๐Ÿ™‚ I am gonna read up about it as I am still looking for a medication that’s best for me.


vixen
5 months ago

Hello @janabananaaa, sounds like youโ€™re nicely on top of your diagnosis! I was diagnosed last year and opted for Tecfidera as it seemed to closely suit my lifestyle. But I know lots of people struggle with remembering to take 2 tablets a day so choose other options. Are any of your symptoms ongoing? Oh, and welcome by the way! ๐Ÿ™‚


janabananaaa
5 months ago

@vixen hi! ๐Ÿ™‚

How are you going with tecfidera?”
I have the option to go with gilenya or carpoxone but my neuro recommended lemtrada.
Not really ongoing the only thing that’s ongoing is my bladder issues and I get restless legs every now and then.
My speech and face and leg went back to normal. My vision is still blurry at the bottom but it doesn’t affect me at all ๐Ÿ™‚

What symptoms are you experiencing?


freddygiguere
5 months ago

Hey Jana,

My Ms specialist doctor put me on avonex needles which had really bad symptoms. But 8 months ago my family doctor told me to go for high concentrate CBD medical cannibus oil. So it has 0.1% THC which is what you find in street cannibus but at a much high % and the medical cannibus is natural so there is no side effects from it. For the last year I couldn’t walk without crutches for short walk or a wheelchair for long walks but today I’m currently walking without crutches or wheelchair and my eye sights been better and I have no more shakes or tremors so I would say I’m happy with that. Since it’s CBD you don’t get high off of it. I’ve never been a street drug user but this medical cannibus is great!


janabananaaa
5 months ago

@freddygiguere

Hi ๐Ÿ™‚

Glad you made such a big progress with this!! I am not sure if I have access to that but someone mentioned it to me once and I couldn’t find it on google.. where are you from? It is so interesting to see how different countries have different recommendations and guidelines. In germany for example they would never recommend lemtrada as first line treatment whereas here in Australia they do.
Best of luck and keep doing what you doing as long as it makes you feel better! ๐Ÿ™‚


freddygiguere
5 months ago

@janabananaaa

Hey thanks ๐Ÿ™‚ I’m from Canada. Right you’d think that every country would go about the same way for whatever disease it is.


bowiekat12
5 months ago

Hi Jana.
I’m very new to this site so still finding my way around.
I was diagnosed in October 2017. The initial plan was to hold off treatment as the symptoms were manageable and minimal compared to many, however the MS had other ideas. I noticed new symptoms along with an increase in previous ones over a period of a few weeks, and they were things that were affecting my ability to work (dropping things and difficulty with fine motor tasks, very easily overwhelmed by more than one person talking/multitasking etc, poor concentration). My Neurologist gave me the options of Aubagio, Tecfidera and Lemtrada. We decided on Lemtrada and another relapse whilst awaiting treatment only strengthened my decision. I finished the first 5 days of treatment last Wednesday so it is still very early days but happy to try and answer any questions if I can help at all. The treatment itself was fine, just long days in the hospital.
Hope all goes well whatever you decide.
Katey


janabananaaa
4 months ago

@freddygiguere
It is so interesting how treatment recommendations depend on the country you get treated. My dad told me yesterday that there hasn’t been much research about cannabis and dose etc but apparently usa & israel have a med lab and testing it for several years now. There was one guy from canada who got this whole thing going and cured his cancer. I will find the links and post it here.
Def worth looking into as you said ๐Ÿ™‚


janabananaaa
4 months ago

@bowiekat12

Welcome! ๐Ÿ™‚
Seems like you had many relapses lately I am sorry to hear..
But good that you got your treatment and decided to hit it hard with lemtrada. ๐Ÿ™‚ hope you will feel better soon xx
I know exactly what you mean with feeling overwhelmed when multitasking! i never had this before ms.. and I work in hospitality atm which can be super stressful and too many people asking questions ๐Ÿ˜ฎ and me dropping everything lol
I see my doctor on the 2 of may and we will organise my journey with lemtrada.. kind of excited and scared at the same time but after all the research I have done it is the most effective treatment for me. Let me know how you go ๐Ÿ™‚
Fast recovery xx


bonang1975
4 months ago

Gidday Jana welcome aboard i was diagnosed about 1996 ive been on most of the drugs but now on lemtrada. Wont lie it knocked me out for a few weeks but i find its so muck better thyhan injecting all the time. Nut each to their own. Been on lem now for 3 years seems to be goin good๐Ÿ‘


janabananaaa
4 months ago

@bonang1975

Heyy :))

Glad you are going well with lemtrada!! Seems to be really successful.
Did you get any side effects? I guess it’s pretty normal to feel off for the first couple of weeks after treatment but as long as it is good in the long run that is what counts.
Best wishes!


bonang1975
3 months ago

Gidday Jana hope all is ok to be honest if ya think you need the steroids go see your doc. It cant hurt it does help the relapse sort itself out quicker but the outcome is the same. If your like me i got no patience and want it sorted asap. But your specialist should send you in the right direction๐Ÿ‘

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