Hey guys my daughter Melani Grace is doing good!! She's 7 months now & growing surely!! Not only that, but unfortunately this came by a coworker out of spite & list due to me rejecting him. My life will NEVER be the same!! 😔😔😭But now I've got start treatment again, bc it's been since I was diagnosed with MS. Now unfortunately my memory isn't good at all. If I don't write it down or say it out loud, then I won't do it. And even during my pregnancy last year, it's been very very difficult to recollect various situations & etc.
And now I'm very very concerned. My Neurologist wants to start treatment again ASAP. Previously, I had Ocrevaus infusions, but now wants to change it.
Are there any recommendations for treatment that would help in this process; as I'm starting all over again.
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Marz91
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Glad your daughter is doing well, but so sorry to hear your memory is having difficulties. I'm newly diagnosed, just two months ago. I feel you on the memory problems. I have cog fog a lot and it just gets worse as the day goes by. I keep those long grocery list like pads nearby to write things down on, and use the app Notion, for keeping notes and lists on, which I share some of with my husband (Like the grocery list, my current meds list, etc). I'm also doing brain training apps to try to exercise my mind and started learning a new language on Duolingo, though I might switch to another app soon.
I'm on Kesimpta, but only a month. I liked it because I watched a vid by Aaron Boster listing his top 10 favorite DMT's and it was tied with Ocrevus for #2. So I researched it and my neuro agreed it was a good one for me. Currently on their Bridge Program, while we are waiting for insurance to approve it, which is an awesome program!
I'm so glad your daughter is doing well! I'm so sorry to hear that you're having memory/cognitive problems, though. It sounds like you're dealing with a lot right now.
As far as medications go, I'm not sure what to tell you, because you didn't say why you are no longer on Ocrevus. Did you have problems on it, did you stop getting it on your own, or did you have to stop due to pregnancy or nursing?
As far as choice of meds, if your doctor is very concerned I wouldn't be surprised if wanted to put you on a more highly effective drug like Kesimpta. Lately doctors are going straight for the most effective drugs early, because "Time is Brain". In other words, damage can happen quickly.
If your neurologist is concerned, I'm sure they will tell you soon which med they want you to start. If you don't hear from them within a few days, start calling them and don't let it go until you get an answer. Normally, it's a very quick thing to get your paperwork filled out and signed, and get you started on new med, so if there's a delay you should ask why!
Once you find out what drug (or drugs, if the doc is giving you a choice) they want to start you on, then you can come back and ask for people's experience on those meds. Then we can try to help you out.
Best of luck to you. I hope we'll hear from you again soon. 😊
Normally Ocrevus continues every six months, indefinitely, unless you have relapses or progression, or serious side effects. Unless the surgery was related to the Ocrevus, like if you had a serious infection? I hope your doctor explains things to a point where you're comfortable. Don't hesitate to keep asking questions, or to get a second opinion if you don't think your doctor is doing a good job telling you what's going on. Or if you're having trouble remembering what's said in the appointments, maybe you could bring someone with you to try to remember what the doctor says and keep you in the loop. Or ask for a copy of the doctor's notes to be sent to you after the appointment. They tend to have a lot of medical jargon, but you can do internet searches or ask for helping with that here so that you know what's going on. I feel like some doctors have that "don't worry your pretty little head" attitude, even when we ask questions. It's very frustrating. Anyway, good luck and keep us posted!
MS is scary, that's for sure. I think we all have times when we're scared to death, so you're not alone! And new meds can be really scary, too. They have scary side effects, lots of them, but it helps me to remember that those don't happen to everybody, or even most people. If you keep all your appointments, get your blood work done when you're supposed to, and call your neuro about an side effects or new symptoms that last longer than 24 hours, etc., you can help minimize that risk. I know it feel like you're starting over, but you're really not. You already know what MS is, you have a doctor in place ready to give you new meds, etc. It really sucks sometimes, though., and I'm sorry you're going through a hard time. Sending prayers your way! 🙏🙏🙏
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It's been a long time...
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Just venting....as usual!
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