Treatment or no treatment?
Hi guys, I hope you're all doing well in these awful and uncertain times. This week will be my 1 year anniversary since being diagnosed with RRMS. I have since been on Tysabri which according you my neurologist is going well as there are no new lesions on the brain. Firstly, I don't even know how many lesions I have and where they are! Does anyone else know/has their neurologist been quite informative because I feel like mine hasn't been AT All. Anyway, I have recently started an MS Fitness Program with a body builder in America (who also has MS). He has had MS for 15 years and has not used any treatment for the last 6 years. He has developed more lesions in the brain and spine, yes. But, he told me today that since stopping treatment, by managing his diet and training regularly, he has never felt better. I feel ever since starting treatment, out of the 12 months of having treatment, I've had a solid 2 or 3 days where I've felt great. Every single other day is a struggle which leads me into a state of depression, fatigue and a sense of worthlessness. Not to mention, I feel its affecting my marriage (I've only been married 1 year) because of this emotional, depressing mess I've become. SO, speaking with David got me thinking. Should I try no treatment for 6 months and see how I feel? Am I being silly and irrational? Am I gambling with my health? Many thanks, a confused 28 year old.
Hello Aansy. I have been diagnosed with ms for 18yrs. I am 45. I highly recommend you try to find a neurologist that will listen and hear your concerns. I am not a clinician so I'm not going to advise you whether or not you should stop bit as for me I've been on rebif for over 10 yes, no new lesions thankfully. I do recommend a healthy diet and whatever exercise you can do. As far as the depression i deal with that also. Have you tried talking with a counselor? Everyone is different and what works for me may not work for you. I don't know you but I do have passion for all humankind. Let me know your thoughts. Stay safe
Hey @Aansy. I am also Sheffield based and has RRMS for 10 years now. Who is your Neuro? They are all very different in Sheffield and how you deal with them depends on who you are with. How were you diagnosed? My route was a struggle, took 2 years and in that time I had to change my life so much. Drugs have slowed my progression so much and even on them I still relapsed. It took me the whole 10 years to find the one that fit me best and I am the closest to me pre MS self now than ever. I was so angry it took me 4 years to get on tysabri because in that time I had gotten so ill, had to change careers, hit my all time lows repeatedly and generally felt terrible. If, without drugs, you were bad I wouldn't recommend trying to go without. If it is the wrong desicion you risk irreversible damage and at least a long slog back to where you started. I would say however to give the lifestyle the bloke you are speaking to a chance on top of drugs. It could be really good for you and you would still reap the benefits! No two people are the same with MS so the chances that what works for him will have the same effect for you is slim and his risk may have paid off but yours may not. It is up to every individual and if you think the drugs aren't the right ones, speak to your Neuro. But trying a life without them all together is a risk that many have to take because of a lack of funds, no NHS and because access is difficult. If you have access, why not take it and make changes elsewhere too. Xx