Drug Therapies

Hi. Guys

First ,English isn't my first language, so please excuse any mistakes.

About my Symptoms

I'm 24yo male from Thailand (what are the odd right?). I'm perfectly healthy and love doing many outdoor activities such as tennis , mountain climbing, running

About 2 weeks ago I have experience about 50% blurred vision on my left eye.

So i went to have my eyes check-up and doctors said there is nothing wrong with my eyes. And suggested me to re-check with neuro doctor.

My neuro take the MRI of my brain and spine. Turn out that my spine was clear but ,there is about 10 old lesions and 1 active attack in my brain that doctor think its cause my eye symptom. (I never experience any symptom before)

Even my symptom are pretty mild my neuro suggest me to take 5 doses of steroid at the hospital and now im on 2nd day of oral steroid at home. My eye still blur but progress to be better at ranging 50-80% of my normal vision. (sometime its better sometime it go back to 50% i dont know why)

Last week I met another 2 neuro doctors, who is MS specialist in Thailand (not many of them available here. )
Both of them said from my MRI and all the blood test I had, there is a high chance that i have MS but to officially comfirm it I have to wait for another attack to occur.

I'm really in depress.

I discuss on the medication with my neuro right away. She would like to put me into Gilenya saying that its the most reliable drug available here is Thailand. (We only have inteferon , copaxone and gilenya )

I'm really worry both about side effect of the dmd drug and my future


Please ,I need you guys advice on this

1. Should I take Gilenya?
- the research is quite promising
- its quite expensive here in Thailand about 2300$ monthly with no social insurance or co-pay available here. I think I can afford it without risking my financial status for like 10-20 years but , if I have to take this drug for my entire life its may be too much to handle financially.
- MS scared me. Now i live quite normal healthy life with symptom free so, its a hard decision to take drug (and its side effect) while you feel perfectly fine. But im also afraid one day MS will attack me and I won't be the same again. What should i do?
Start gilenya now or hold it?

2.LDN?
-I really want to try it. Some said it is good but not working for some. With no real research on this drug on slow progression of MS. Is it worth a try?

Sorry for the long essay with bad bad english.

One last thing, I know you guys maybe answer this question a hundred of times before but

Can i live a normal life?
I mean without disabilities
its so many dream outthere that I want to fullfill.


I really need you guys support on this.
We have no community here in Thailand and I have absolutely noone to talk to.
Thanks god, I found this community.

Hi Pual

Sorry to hear you are having a difficult time. Rest assured, you have come to the right place! We are a very supportive community, so even if you have no-one to talk to physically, you will always find someone on here. I live in London, yet this is the only place I come to to speak to other people with MS!

Firstly, the drugs are a very personal choice, and every Neurologist has a different idea of how soon they should be taken and what type. I avoided taking drugs for the first 3 years of my MS, until I had a severe relapse that affected my mobility (I had not found the OMS lifestyle at that time). With hindsight, maybe I should have started on meds sooner but it wasn't something my Neuro pushed.

I have been taking Copaxone for just over a year. I find it very easy and have had no side-effects, apart from a bit of stinging at the injection site in the beginning. However, everyone reacts to drugs differently and I know of some people who haven't had such an easy time with it.

The best thing you can do is research. Have a look on this site as there are lots of discussions about different drugs and it will give you a better idea. But it really is a personal choice and no-one can make that decision for you.

It sounds like you have had an attack of Optic Neuritis, which is exactly the same symptom that I started with 6 years ago. I didn't take steroids for it and it eventually cleared up after about a month. I had a second attack in my other eye a year later, which was milder but took longer to clear up. I still find my eye goes blurry from time to time if I am feeling run down, but that is the nature of MS.

I strongly advise you to begin the OMS programme - I have been on it for almost 2 years now. My symptoms are much worse that yours, but I am seeing definite improvements. You are very lucky to have found this place so soon after your first symptom, so adopt the lifestyle changes and you can prevent your MS going downhill. Yes, it is perfectly possible to lead a normal life and avoid disability, but you need to take control. Professor Jelinek and Karen Law have written a book called Recovering from Multiple Sclerosis which is the stories of 12 people who have followed the OMS programme and are now leading disability-free lives.

I am sure other people will come forward with advice. We are always here if you need help! Good luck!

Rachel

PS: Your English is very good -much better than my Thai!

Hey buddy,

Your English is good. I know that it is a scary moment for you finding out about MS but you will see everything will be ok. It takes a little while to take in this kind of shocking news but you will be fine, don't worry.

Your future is bright and will be great even with MS. On this website you may have noticed, that there are many things that you can do to help yourself (i.e. changing your diet to eat healthy, daily meditation, regular exercise, vitamin D3 supplementation, Flaxseed oil supplementation). I would really recommend you read Overcoming multiple sclerosis which will explain all this which will maximise your chances to contain MS and hopefully help stop the progression of MS because yes, you can control it and not let it control you.

Regarding medication, I am currently on Gilenya. It is currently working for me and there aren't really any side effects. I am living absolutely fine with it. I would recommend it because it is the most protective out of the drugs you mentioned and is safe.

Science is progressing rapidly and new medication will come out eventually so you cannot think by saying you will be taking Gilenya for a lifetime.

You will need to think about it, but I think it is not a bad idea to start taking Gilenya for the start to protect you and start focus on changing your habits with food by learning what not to eat, incorporating meditation, regular exercise and to do all these things regularly for a few years till your body adjusts and gets used to it. Then reconsider what to do in 3, 4 or 5 years time whether you really think you should pursue with medication as it takes your body up to 5 years to adapt to the food changes. However, food, meditation, exercise are all like medication, protective for MS.

I hope this information helps you buddy.

Wishing you a lot of happiness and light in your journey.

Luca

Hi
Your English is very good.
What ever drug you decide to do.
There is also the exercise, vitamin d, meditation and diet these are very important for recovery and long term stability.
This website has lots of information about what to eat, what not to eat, exercise, vitamin d, meditation etc. particularily in the Resources section.
Perhaps look at what you are regularily eating and see which parts to eat less of, eat more of or not eat at all.
Any questions ask away we are all happy to try and reply.

Hi Pual,
Welcome to this website! Hope we can provide the support that you need.

Your diagnosis sounds very much like mine. The upper half of my central vision in my left eye went white on Dec 27, 2013. I saw a few doctors and had an MRI of my brain which showed lesions. My neck and spine were clear. I was given the diagnosis of MS in January 2014. My neurologist gave me all the literature on the different medications and I was supposed to choose! That was so hard. I chose Copaxone and started it three months after diagnosis (March). Then, in April, I found the Overcoming Multiple Sclerosis program which I adopted fully at the end of April. I also have a couple of other symptoms (interval vibration in my left leg began April 7, 2014, and burning of skin in right leg began September 2014). I have had nothing new since September and often my symptoms are so faint I don't notice them. I am on the 3 times a week 40 mg Copaxone and I have no issues with it.
My long term plan is to not take Copaxone. There are many people on this site who do not use medication. Some did earlier and now don't. One of the most frustrating things about MS is the fact that it is different for everyone. So it is hard to make the decisions about medication. Should you take one or not? Two things have calmed me after diagnosis: (1) The OMS program is something I can do that is research based. My suggestion to you is to do this program. Start now with at least one part of it (diet including vitamin D and flaxseed oil) and work your way into all of it. (2) We have choices when it comes to medication. You can choose to take one or not. You can take one and if it doesn't work for you, you can stop taking it and change. This will definitely be a conversation you would have with your doctor. From your post, I hear that affording the med could potentially be a stressor for you. That is something to consider.

Learn all you can about the different medications and choose what you feel is right for you if you choose to take one.

Hugs and strength to you!

I wanted to reiterate what others have mentioned. You must have your vitamin D levels checked. Just because you live in a sunny climate doesn't mean you're getting enough. Vitamin D is perhaps the strongest "medicine". Apart from that, I encourage you to start the diet. I started with Avonex before I found the diet and have continued. I let my doctor think that the meds are working well:)

I would say that at the beginning, the meds can calm things down quickly. Bear in mind, however, that once you start you are unlikely to stop. I've passed 5 years and suspect I could quit - but since the totality of what I am doing is working, I will continue with each one.

There is often a lot of fear when first being diagnosed. This is a great website and shares many things you can do to improve your health if you choose to take medications or choose not to take medications.

I was diagnosed 2 years ago with symptoms for at least 11 years before that off and on. I started the recommendations here almost immediately...diet changes (adding gluten free) and vitamin checks....D and B especially. I chose not to take medications, besides the original steroids to help recover from significant attack. I have been fine without meds, although my Neuro. recommended them too. Diet and supplements made HUGE improvements. No one can make that very personal decision of what med or if to use meds, but we are willing to share experiences!

Wishing you the very best!