Just had my first 'full' infusion the other day, feeling good (can't stand the heat either but here in Ireland it rarely gets above 25 degrees so that's good for me 🤗) good to know that it could take a while before things really improve so onwards n upwards💃🍀
I’m yet to be diagnosed with ms, but I have inflammation on my brain and spinal cord, have bands in my lumbar puncture and I have been housebound for 2 years. My body feels so heavy I struggle to walk, I have dizziness and my hands and feet move slowly. I was seeing double, but seems to have gone away following the oms diet. I’m hoping once diagnosed and on medication I will be able to get some kind of life back. The doctors now think I have ms after they thought I had something called adult onset Alexander disease. I go back in September and I’m hoping to be diagnosed so I can start treatment.
@@NeuroNerdyX yes I have what they called “white matter” on the brain.They did lumbar puncture which shown bands. So they now think I have ms. Just hoping I get diagnosed in September so I can get on medication.
great video, quite hopefull. I get my first infusion on the 29th. A lot of your stories of past adverse episodes sound quite familiar and I hope the Ocrevus helps. I was all good (relatively) with the MS til 3 years ago (diagnosed 15 years ago). Now I'm largely bound to our property
I'm sorry to hear about your limitations. Do you mind if I ask your age? Mine didn't get really really bad until I turned 40 but I had been seeing specialists since 2007 and no one could figure out what was going on.
@@NeuroNerdyX I am 48 now. I worked as a construction surveyor but had to quit my salaried full time job once my limp became a consistent feature. Fortunately my wife has a good job and I do what I can to manage our 9 and 11 year old sons. It was roughly 2004 when I had a bout of optic neuritis and that started the journey. It never really slowed me down at all until recently but now it's got me. Thanks again for your overview
Just had my first 'full' infusion the other day, feeling good (can't stand the heat either but here in Ireland it rarely gets above 25 degrees so that's good for me 🤗) good to know that it could take a while before things really improve so onwards n upwards💃🍀
Great to hear! Good luck with it. :)
I’m yet to be diagnosed with ms, but I have inflammation on my brain and spinal cord, have bands in my lumbar puncture and I have been housebound for 2 years. My body feels so heavy I struggle to walk, I have dizziness and my hands and feet move slowly. I was seeing double, but seems to have gone away following the oms diet. I’m hoping once diagnosed and on medication I will be able to get some kind of life back. The doctors now think I have ms after they thought I had something called adult onset Alexander disease. I go back in September and I’m hoping to be diagnosed so I can start treatment.
Did they perform at brain, cervical, and lumbar MRI on you? My guess is yes based on your info but any noticable lesions or gray matter problems?
@@NeuroNerdyX yes I have what they called “white matter” on the brain.They did lumbar puncture which shown bands. So they now think I have ms. Just hoping I get diagnosed in September so I can get on medication.
great video, quite hopefull. I get my first infusion on the 29th. A lot of your stories of past adverse episodes sound quite familiar and I hope the Ocrevus helps. I was all good (relatively) with the MS til 3 years ago (diagnosed 15 years ago). Now I'm largely bound to our property
I'm sorry to hear about your limitations. Do you mind if I ask your age? Mine didn't get really really bad until I turned 40 but I had been seeing specialists since 2007 and no one could figure out what was going on.
@@NeuroNerdyX I am 48 now. I worked as a construction surveyor but had to quit my salaried full time job once my limp became a consistent feature. Fortunately my wife has a good job and I do what I can to manage our 9 and 11 year old sons. It was roughly 2004 when I had a bout of optic neuritis and that started the journey. It never really slowed me down at all until recently but now it's got me. Thanks again for your overview
Simple Forging please keep me updated. I hope it works as well for you as it has for me. Best of luck.
@@simpleforging3339 how did your infusion go?
@@NeuroNerdyX hard to tell most days. We've got 11 and 9 year old boys and my wife is ... Just trying to keep it all together :)