Hello @disneyfan, welcome to Connect! Thank you for introducing yourself to the other members of the MS group.

@disneyfan (Robert), while we wait for some of the other members to jump in and introduce themselves, would you mind sharing how your first treatment of ocrevus went? Is there anything particular about your new diagnosis that you are having trouble with getting used to that you would like to ask the other members about?

Hello Robert, @disneyfan

I would like to add my welcome to you along with Justin's. We look forward to getting to know you in the future and providing you with support as you walk this journey.

While MS is a difficult diagnosis to face you are doing well to seek out support and Mayo Connect is a great place to receive that support. I'm always interested in the path people walk down before a neurological diagnosis comes about, as I also have a neurological disorder (not MS). If you are comfortable doing so, please share with us: How long were you experiencing symptoms before a diagnosis came about? What tests proved conclusively that you had MS? What seems to be the worse symptom that you are facing right now?

Teresa

My first dose of Ocrevus went OK, I had a fever and headache afterwards. My head felt woozy for a couple of days and I was moving real slow. I started having symptoms in Jan 2016 and my first trip to Mayo was July 2016. My neurologist diagnosed me with neuropathy but she wanted me to go somewhere so I could find out why I had all these weird occurrences she couldn't explain. I returned to Mayo in Oct. and Dec. of 2016. They did tests that confirmed my small fiber neoropathy. I had MRI's done and they were compared to previous ones I had which showed more white spots each time(I have seizures so it was hard to see what was happening). The test that helped with the diagnosis was a spinal tap which showed numerous lesions on the spine and other abnormalities. My last visit to Mayo was in March of 2017 and that is when I finally got the diagnosis.

Thanks for sharing your story, @disneyfan. You displayed a remarkable persistence in finding the cause of your symptoms - which certainly were complex. How often will you be having the Ocrevus treatments? Did your doctor give you any idea as to when you might experience some relief from your symptoms? Teresa

I have my next treatment of Ocrevus 2 weeks after the first one and then I will have treatments every 6 months. My doctor said that since I was just diagnosed with primary progressive MS(PPMS) and they just came out with the first drug for this kind of MS she thinks that it will keep my condition stable and that it will not get any worse. She says that there is a chance that the myelin will start to heal itself with the medicine because my condition just started and I started the drug quickly. She hopes that I get lucky and it gets better. It is very hard getting used to not doing things you did before. I used to spend all my time outside working in the vegetable or flower garden orworking in the garage. Now, I work outside for 45 minutes and go in and rest for 2 or 3 hours and then go out and work for another 45 minutes and then I am wiped out for the rest of the day.

@disneyfan I am excited to hear that there is a new medication that might actually help the myelin to heal itself - that would be great. From those who have MS, I think that the fatigue is probably one of the most significant symptom. You really have to measure your activity level and sometimes limit your activities and stop before you get tired. It is a hard adjustment, isn't it?

Teresa