@ladylucklollypop 

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ladylucklollypop

Newly diagnosed mild symptoms, lemtrada?

Hi everyone I'm newly diagnosed. I was diagnosed 10 days ago. Other than having an MS diagnosis I'm the picture of good health. I had an episode of optic neuritis last new year that lasted 5-6 days and it's the only thing really. I've been told my mri's show activity and new leasons but i have no symptoms or if I do it's no worse than normal tiredness or a bad temper. Im considering lemtrada or tecfidera as my treatments but am struggling with having a treatment with horrible side effects when my symptoms of the disease itself don't affect me. Any advice anyone could give me would be greatly appreciated. I want to get a treatment and then get on with my life. I have to I'm a single mother to a 4 year old and I have to be strong to look after him now and in years to come I don't want him to be looking after me. I have nobody to speak to about this it's crazy. I live in Scotland where 1 in 500 people have MS apparently where are they? I don't know anyone with this disease. This may sound silly but maybe some of you have had the same question. How long have these drugs been around and what can happen years after taking them? Does anyone know? I understand that we can't know if they prevent future disability if a drug is relatively new but any info on the age of these two drugs and the safety of them would make this terrified lady feel a bit better about her decision. Thank you in advance. X
@Vixen

Hello @ladylucklollypop, welcome to Shift where we all understand how you are feeling. If you use the ‘map’ function at the top you can see where other folk in Scotland live. It’s great that you’re feeling well, stay on top of it! The problem with MS is that often the damage is being done behind the scenes and we are not even aware of it. That’s why - if you do decide to take DMDs - they work away to try and keep this thing at bay. Not everyone decides to go the DMD route as they are very powerful, and some want to pursue more holistic routes. The thing is, 20 years ago, these medicines weren’t even an option as they didn’t exist! Also, diagnosis these days can be rapid, whereas previously, people could wait a decade for a diagnosis. So although it won’t seem like it, now is a ‘good time ‘ to be diagnosed as there are advances being made all the time. Having a diagnosis will mean you need to be really balanced with everything. Eat healthily, exercise but don’t overdo it, try not to get stressed. Stress is a real enemy of MS, as it feeds right into making it seem worse. Also, although you will be tempted, as we all are, try to avoid over-googling and stick to official sites with accurate information. You are right to be concerned about the longer-term effect of drugs. But I could say the same about headache medication I’ve taken for decades, or vaccinations against tropical diseases! Who knows? I just have to trust the professionals. Take the time to digest this diagnosis properly, don’t rush things or make rash decisions. You will be OK, you’re not dying, although you might think that way! You need to be the best mum you can be to your kiddie, and so Mum needs lots of treats, support and a stress-free life. It’s great that you’ve discovered this site quickly, use it to your advantage as everyone here is friendly and will do their best to help you realise that you’re not alone. X

@Stumbler

Hi @ladylucklollypop and welcome. This is all so very new to you, so don't feel rushed into making any decisions, which you may, or may not, regret. MS is an insidious condition, which starts eating away at the insulation on the nerve fibres in your Central Nervous System (CNS). Not all damage can be picked by an MRI scanner and may not immediately cause noticeable symptoms. Lemtrada is one of the best available Disease Modifying Therapies (DMTs), which involves infusions over 5 days in year 1 and infusions over 3 days in year 2. And, that's it. It may take a couple of weeks to recover from the infusions. But, have a read through of our @tracyd 's blog of her warts'n'all Lemtrada experience :- <a href="http://tracyslemtradajourney.blogspot.com/">tracyslemtradajourney.blogspot.co.uk</a> You can also read others firsthand experiences of both Lemtrada and Tecfidera by using the Forum Search function (magnifying glass, top left). Scotland is a hotbed of MS activity, as is Canada. You may want to have a look at the Forum Map of member's locations (https://shift.ms/map). Well, those that have shared their location. You can then find some of the 1 in 500 in your locality. Feel free to ask any questions, as you come to deal with this diagnosis. :wink: