First time poster. Feel a bit lost
Hey everyone, so here’s my story. I’m 38 was diagnosed in 2017. I think I always had symptoms but things didn’t start going wrong till 2013. My mom suddenly passed away from cancer, then in 2015 my wife was diagnosed with brain cancer. My motto was always that I wasn’t saving anything for the return trip, to do everything I could for her. I started having real pain in my knees and started physical therapy, it didn’t help and the therapist send me to a neurologist. A MRI later and I was diagnosed. My wife passed in September of 2017 and I have been going downhill since. Lots of fatigue, leg issues and now I’m just trying to keep it together. I went on a road trip last week from Jersey to Idaho and blacked out while driving, crashing into some road signs. The doctor but me on ocrevus infusions, I’m on my 3rd now and I don’t think it’s doing anything, I feel myself getting worse. I consider myself a caregiver and I don’t like getting help from anyone, just don’t know how to accept it. I have a relationship for a few months with a great woman but put an end to it because in my head I was getting worse and didn’t want someone else to be put though the same thing of watching someone get progressively worse. So here I am somewhat lost, wanting to talk to people but not wanting to let the cat out of the bag except to my inner circle.
This site is great, already feels nice to tell my story.
Hi @donjewelsny . You have had an awful few years. I'm so sorry that your Mother and wife passed in such a short time for you. The obvious stress of both these situations has probably provoked the progression of your MS. Now, you need to lead a settled, balanced and healthy lifestyle. Live healthily, eat healthily and avoid (or manage) stressful situations. And, don't push anyone away. That shouldn't be, or needs to be, your decision. You are so much more than your MS, so don't isolate yourself.
Hello @donjewelsny, I’m so pleased you have found this site, lots of lost souls and not-so-lost souls who all understand what it’s like to be us. You’ve had a horrendous five years but have somehow gotten through it. My understanding of Ocrevus, which has only just been approved partially in the U.K., is that it works behind the scenes to slow down progression, rather than to improve symptoms. I was diagnosed last year too, so the ramifications are still unfolding gradually. I’m doing OK though, I think. Do you work? Sending you lots of cosmic support across the Atlantic....... :-)