@world25 

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world25

Young, newly diagnosed please help

Hi, I have recently been diagnosed with MS about 3 weeks ago. At the moment I’m trying hard to stay positive as I’ve hesrd negative comments from people that I should live my life before it’s too late etc. Unfortunatly my MS is really active so I have been given a choice of lemtrada or Tysabri? I’m struggling which one to pick as they have such bad side effects. Is anyone able to give me their experience of both treatments positive and negatives? Anything that’s helped them in terms of diet and excersise? I used to run 5k every day, before I was diagnoised now whenever I run I get extremely bad burning legs and lower back pain. I’m worried about the Thyroid problems that lemtrada gives as I don’t want to put on weight and I also have a blood clotting problem. I’d love to speak to someone around my age too 20-30? And hear you experiences as in yet to find someone in this category but any advice anyone any age is willing to give would be a big help. I feel quite lonely and vulnerable at the moment due to numbness in my leg and struggling to walk, not many people understand MS as it is an invisible illness. Thank you in advance!
@Vixen

Hello lovely, and welcome. I’m afraid I’m not in your age group but there are lots on here who are. I was diagnosed last year and completely understand how you are feeling. It probably took a year to feel recovered, not just physically but mentally and emotionally too. But in that year, I’ve gotten to grips and turned my life around, including losing over 20pounds. Anything is possible, but it’s going to take time and you need to address things one step at a time. Your post raises lots of issues and you will need to work out a course for each of them to follow. My top tips: allow yourself however much time you need to let things unfold. Do whatever it takes to get you through this phase. Things are rough now but I promise it will get better. Avoid Google as no one controls the information you may find. Stress is a major player in causing problems, exacerbations and flare ups, and I would never have believed that had I not seen how stress now has a big impact on me in many ways. Accept whatever help and support is offered to you. Just take time to find out how you feel about things as the process settles for you. At the moment, you are struggling to run, so just don’t - for now. Is your blood clotting problem ITP? Lastly, I don’t think anyone would argue with the fact that the MS world is on the brink of major breakthroughs that wouldn’t have seemed possible even a decade ago. The medication I take -Tecfidera- is hopefully slowing the rate of progression and relapses by 50 percent . Again, 10years again the UK there was no such drug. Have faith, know you’re not alone, keep posting and asking questions, and be strong! Take care x

@EdmontonAlberta

@world25 Everyone should always live their life before it is too late - everyone! My younger sister Denise was one of the last polio babies - the doctors tried to convince my Mom to give her up so the government could raise her - Mom refused. After years of challenges including the doctors slicing a wedge into her shin bone to straighten her leg out... My sister has traveled the world including a year crossing Australia; she is presently vacationing in Mexico. My first wife died from Scleroderma on a family vacation 24 years ago. She & I traveled everywhere - she was loved & adored until she took her last breath. She died happy & fulfilled. And yes MS is giving me problems but who cares? I have great friends & family; overall life is good... Nobody knows the future; nobody. Except that there will be challenges.