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I know I should be grateful and I am but I absolutely hate taking my Ocrevus thinking it’s doing more damage than good. I spend a lot of time thinking that I’m miss diagnosed even though I doubt that’s the case. I’m lucky I get it. So be easy on me.
Since I was diagnosed with multiple lesions and severe brain atrophy I plan on staying on a DMT to hopefully prevent anymore damage and atrophy. It can be scary 😨
@A MyMSTeam Member I know how you feel I would get a second opinion & see other doctors. Im skeptical about the medications also & the side effects suck. I did some the first 5 years after I was diagnosed but I felt like I was worsening on them. I was told that the medications are very aggressive & that the MS seems to get worse once you stop them. I noticed off or on medication it continues progressing & I was still getting symptoms. I decided to stop all treatment completely & do alternative treatments. It's just my personal opinion from my experiences & from what I've learned from other people that decided to do the same.
Again I might be wrong I'm just saying from my observations personal experiences and opinion.
And I worked in the MS field, so even knowing all about MS, still had doubts at times. Three brain lesions on diagnosis, the 24 at next flare-up, then years later only 2 so that can be confusing. Had one of the top neurologists in the world, Dr. Noseworthy shake my hand and tell me to keep doing what I was doing as had less lesions than the day I was diagnosed. However that didn't continue.
Hi Jim128! When dx I was basically fine for about 9 years , working, driving,then MS kicked in gradually. I kept working PT for about 5 more years. Appreciate the good years, find a good physical therapist, easy stretching restorative yoga. Combine the Best of Holistic with the best of medical. Be your own best advocate. Look into local MS support groups to meet friends and get info on local activities (tai chi) and events. Check if any MS drug companies still sponsor free dinners (type in Any MS drug and Event in your area ) you don't have to be taking it. They'll comp you and a guest and give free gifts (lip balm, nice bags, umbrella, etc). Years ago we went to Many. Back then people would go to many events each week, saying "where are you going Tues? ,Thurs?,
Do your local Research now! Hugs!
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