This is my first post, as recommended by the MSAA Community. I live in England, so a British MS group covers me. It is the MS Society, and I've joined in on a couple of walks to raise money for them. I've even done an interview on TV about my MS, though it was quite early in the morning and I know a lot of people wouldn't have had the time to watch it.
I've even started doing videos on YouTube, but so far they cover my MRI scans and my ocrevus infusions. I need to do a multi video about my experience with MS, from my diagnosis to now. I know my bio is quite long, but there's been many changes in my life since my diagnosis. From how I tried to study Adult Nursing and my reasons behind it, to how and why I dropped out, to quitting my job at KFC, to quitting my job on telephony at a bank, to my deterioration. Its not fun having MS, but there are positives, like being able to get a blue badge to park in disability spots, to a medical exemption certificate so I don't have to pay for prescriptions! How my partner is technically a carer, and so he was able to get his covid and flu vaccines done no questions asked! I had an ocrevus infusion at the end of November, so I'm just waiting for the 12 weeks before I can catch up with my vaccines 🙃 cannot wait!
Written by
Cwright170994
To view profiles and participate in discussions please or .
Cwright170994 Welcome to this wonderful group! Look forward to getting to know you more. I have had MS since 2006. Was originally on Copaxone and switched to Tecfidera (now on the generic) for about 5 years now. It seems to work for me but my numbers have fallen on the low side so my new neuro wants me to have bloodword done in 3 months to see if they go back up. If not, I may have to take a break from meds which I really dread doing.
I was on copaxone for around 5 years, and then they tried me on tysabri. That's when they found that I'm jcv positive, so I had to go back on copaxone for a few months before they gave me the green light to start ocrevus. It's an amazing treatment! Started 2021 not being able to move anywhere without assistance, and finished my 2nd starter dose, in June that year, being able to confidentiality get up and down stairs, and get my manual wheelchair out of the house by myself! I'm now also able to get my electric wheels out by myself, but I need either assistance getting it back in, or someone (like my partner) getting it in for me 🤗😁
I am jcv positive as well, but luckily my number is low so I have been allowed to stay on Tecfidera. Hopefully when I get my blood work done, my numbers go back up (they tend to be a rollar coaster somtimes).
Thank you ❤️ and I've just been looking into it, doing my own research, and my mum keeps telling me about more stuff I can claim from the government. She used to work in nursing homes and then at a home for people with autism. She's now a carer for my nephew, because my sister was struggling on her own dealing with his tracheostomy. She loves it, and I love it too 🤗
Thank you so much 💓 and not to worry, this is my life now, but I've got so many people around me that understand what I may and may not be able to do... keeps me sane 😂
Welcome! This is a great group for information, a good laugh or just vent if needed. Sounds like you have a good attitude about having this disease. That really makes a lot of difference with how you feel. Hope to hear more from you!
welcome to this great family of people who all love to try and help any that needs it to the best of their ability for we are not doctors just people who care about others trying to deal with living with MS. we enjoy sending jokes ,pictures of our pets and of course family ...hope you will enjoy all of us ...
Welcome to our family Cwright170994 from Fancy59! Many of the medicines you have been on so have I. What we Often see is that many of us follow the same path on our MS journey. However the paths usually run parallel alongside each other And hit major milestones at different times. Part of our mission here at the MS chat room is to help you through the rough spots and to let you know you are not alone on your MS journey. I look forward to getting to know you better. I know there is much we can learn from each other. Remember together we are stronger. Fancy59.
Thank you everyone for your warm welcome ❤️ I'm hoping to hit some milestones with this disease! And it appears I've hit one already, with the no new lesions 😁
Also, if you'd like to watch my journey, here's a link to my YouTube! I like to video small, "insignificant" stuff that happens with me, and I'm possibly going to do a video of my journey with MS next week 🤔 talking about my first symptom (simple partial epilepsy), a differential diagnosis (CADASIL), and up to now. Please have a look, if you'd like 😁
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Experience with First Round of Ocrevus
Ocrevus - First full dose...
Update on my last post from yesterday 
Unnumbered post More to my technical question 25 Jun 2020
