Hi, I was diagnosed with PPMS when I was 35 years old and when my Neurologist told me that I got MS (PPMS) without any sort of cure then it was for me ‘challenge accepted’! Well I had first to get through the initial mega shock of receiving the information of my diagnose, I would be lying if I said it was easy, I could barely walk out of the doctors room as if I didn’t have already spasticity problems with my legs before then the message definitely didn’t help! Why me, what did I do wrong, could I had done something differently, it took long time for me to really accept it and I guess a big part of me never will.
I simply could not accept that there is “no cure” and that now I should just accept and prepare to keep getting worse, only question was how fast. This I cannot accept, I will not, it will be to give up and I could not put my life 100% solely in other peoples hands who in the first place does not have the cure. If I could do something, if I could by some means get it better then I owe it to my self and my family to find out how, no matter how much time and frustration the lifelong MS cure research will take me – I will not give up, if not for me then I owe it to my little kid who means everything to me. This kind of change of mindset gave me the very well needed strength to begin my ‘Cure for MS’ journey 🙂 .
It was the hectic start of extensive research in Multiple Sclerosis, all the types of symptoms, the types of drugs that has been tested on both humans and lab rats. What I quickly learned as the more I read and watched, was that a lot of the information out there is fantastic and really gives you a better understanding of MS, but also that a lot of the information out there is also outdated, misinforming and even blatantly incorrect. I learned quickly that your own judgement in what is right and what is wrong is crucial, as the more your learn you suddenly enter a whole new dimension of contradicting informations 😕 .
I have read so much and seen so much, and as I am still in search for what can help me and I have tried a lot of different things, and as I am experimenting and finding new knowledge then I wanted to share the best and most inspiring information that I have found to be most helpfull for me in my search for answers. I hope with this MS website that I can help you to easier finding the answers that your are looking for, and to give you some of the clues and answers that you like me need to most effective ways to manage the countless MS symptoms and challenges that you have to live with.
I am trying to post at least 1 new MS video every day, so feel free to join up on BigEmma facebook page as I always post the links there too. In average only 1 out of 10 MS videos that I look through has good enough quality to be added here. A lot of the information can seem very technical and for MS nerds, but I guess the disease made me exactly that – a MS Nerd – I need to expand my MS Knowledge, I dont have a choice, I dont want to give up, I want to know what can help me and I will not stop until I have done everything I possibly can! (I am working on writing all the things that I have tried, what have helped and what have not, I think my diary is 100 pages+, I plan to post all the relevant findings late 2017, when I absolutely know what has helped and what has not). For now the search for the incurable disease continues, and tbh I feel like a guinea pig both by the stuff I am trying but also by some of the doctors who for some reason couldn’t stop giving me medicines and solutions that just made me worse…. life… (sigh).. 🙄 .
I cannot honestly blame them as you owe it to yourself to know most about your disease, troubles and what works and doesn’t. How can a doctor who maybe have 30 min to speak to you once a month, know exactly what you need and what the best and what works best for your countless symptoms? Most importantly how can a doctor who works approximately 40 hours a week with patients dozen of daily patients and afterwards full family life, have the extra time to learn all the new knowledge? 😐
I learned quickly that the more I knew about myself the more precise I could be on explaining my exact symptoms for my doctors, as all the continuous new MS knowledge made me able to read and understand my MS symptoms in a completely new way. This made my neurologists and physicians work easier as they knew much better what medicine / exercises had the best chances to help with my daily MS challenges. Furthermore one of the first things that I learned was that all types of alternative treatments questions felt like talking English to a Martian, so on this path I now knew that I was definitely on my own.
In some way it felt frustrating but also gave me the hope that I needed, that there is still so much to research and to try out. It felt like a blessing to me that there maybe could be something that could make me feel better, and I refused to believe that I could be the only person in the world who is looking for more solutions than the official medical/health society could offer. In other words it was good news, it opened up a whole new dimension of MS knowledge like what has other MS patients tried, what has worked and what has not? I was quickly positively shocked on how much information there was on this topic, and my task now furthermore included to read and watch countless stories of MS people like me. This proved to be the most emotional rollercoaster to watch as some of the MS stories were both inspiring, sad, challenging, horrific and quite emotional at times, suddenly I knew exactly how they felt and what hardships they were facing…
I wanted to share a comment that I read on a MS video that just seemed to stick with me. It summed up in a remarkable quick way what living with MS is like and despite maintaining a positive spirit. – Quote: “I dont suffer from MS, I just play life on hard”.
I really hope that I can help you save a lot of hours in your MS research, and If you stumble upon a fantastic MS link that you have found to be very helpfull for you and feel it would benefit others who suffers from MS, then please feel more than welcome to send me the youtube link or website, and I will make sure to check it out and include it if the content is relevant and valid.
Lastly I wanted to mention that I have include a donate button in the bottom of the website to cover the running & development costs of BigEmma. I am deeply grateful for any small donations and cannot thank you enough for helping out in improving BigEmma & MS awareness! 🙂
Please notice that I am not a doctor, and the information shared on BigEmma is information that is linked to youtube or to different MS related websites. All content is linked to, so you can always go directly to the source. Please read my disclaimer for more information.