Hi.
I was Dx in May23 age 41 privately, but have had symptoms since age 12, so trying to come to terms with it while waiting for my NHS consultation, before I can start DMTs. Scary some days while my symptoms get worse and other days I feel more emotionally resilient. Finally have a consultation booked for Jan24, after chasing regularly, to be told that NHS have classed me as normal priority, despite 2 trips to A&E. Is this normal? My gut says no, I’m an expert on me and this is really worse. My brain says be patient in the post pandemic world. Meanwhile, working on diet, exercise and guessing / youtube researching at which physiotherapy might help my physical symptoms. I want to stop MS in its tracks with an effective DMT asap. How long after Dx do people usually start DMT and how do i choose which DMT is right for me
Thanks
Hello and I am sorry to welcome you to this crappy disease! I was diagnosed in 2011 and because of all of the lesions that I had already had the neurologist at Stony Brook hospital wanted to start me on tysabri. 12 years later and maybe 6 relapses I have NO NEW LESIONS!! Tysabri is the only medicine I have been on but I have an active case with sensory symptoms, not motor. I can’t take the heat or humidity, bright lights and flashing lights give me terrible headaches, can’t go to a loud bar or movie and I have a lot of spasticity. I smoke pot and indicas help my pain immensely. I wish you luck and you are not alone. One positive that I felt when I was diagnosed was the feeling like I’m not a hypochondriac. The mystery ailments for years that would come and go are all explained. My best friend said “no offense Kasey but I always knew that something was wrong with you and now you know what it is and can treat it.” I remember feeling petrified when my left hand started to go tingling, numb yet painful as if rubber bands were wrapped around my arm and hand. It started with my pinky and ring finger, then the whole hand and then it moved up my arm. I used to have these weird panicking feelings like I could just drop dead at any moment. Now I know what the weird feelings are and I’m not afraid anymore. Sending positive thoughts from new York…you will be ok!!! Love Kasey
Hello,
I was about primary school age when I first noticed the subtle MS symptoms, floaters and pins & needles in both feet; I was too young to even know anything about multiple sclerosis back then.
I didn’t start on any DMD, my first one Avonex, until about 10 years after dx; Mum’s friend encouraged me to try her complimentary health treatment back in 2000. It worked really well, until the symptoms started up again; then eventually I did turn to conventional DMT.
It’s definitely your decision, which treatment you wish to pursue; hope you find the one that’s most effective.
Yes you’re doing all the right things following a healthy plan, it all helps in the fight against MS.
Best regards,
JP
Thank you
Thank you