November 3, 2020
I was diagnosed last week and am about to start treatment. I have an appointment 1 month from today with another neurologist for a 2nd opinion (this neuro specializes in MS while my current neuro does not). I am not necessarily thinking I'll get a different diagnosis, rather wondering if she will want me on a different treatment plan.
November 4, 2020
November 4, 2020
Thank you Erin. My biggest concern at the moment, before taking the medication, is the JC Virus. I contacted my doctor yesterday to ask if I was tested for this through the blood work that was done, and his response was that "testing for the JC Virus is not required by the manufacturer". Uh, ok. Not what I asked. I want to know if I was tested and what the result was. So obviously by his answer I wasn't. Shouldn't this be a normal part of the process before starting treatment? I know that other meds also carry risk of PML. I'm not even sure that it would change my mind to take a certain med if the I felt confident in my doctor, but since I don't feel confident that he is getting the fullest medical picture possible it is making an already stressful situation worse. My appt with a new neuro is 1 month from yesterday and I don't know if I should just wait to get her opinion before taking meds, or take my chances and start w/ Tecfidera until I can get to her. The only symptoms I currently have are a very slight compression sock feeling over my lower legs and feet that has been going on since Aug. No pain, no vision problems, really nothing else. But I also don't want to delay treatment that could cause additional symptoms to present. Just feeling frustrated that my current doctor isn't instilling confidence.
November 4, 2020
Hmmm. I don't blame you for seeing some red flags there, CDChannell! You will always be the expert on your own body and ultimately, YOU get to decide what treatments to pursue. If you have any questions or doubts, it's okay to pause and think about that. I really can't offer any advice as to whether or not you should wait until that appointment with the second physician. But, I will say that having a level of trust and open communication with your physician can be a critical part of your care. I wish I had a crystal ball and could just say, "Do this! This will work!". But, unfortunately, I don't. I think you have every right to feel frustrated at this time. And I hope that other neurologist is a good fit for you! Best, Erin, MultipleSclerosis.net Team Member.
November 5, 2020
My only advice to anyone whether MS or other issues, anytime a new med is on the table, research, research, research. Make sure you know the side effects, etc. Never blindly say, oh yeah I'll do it.
December 7, 2020
I was prescribed Tecfidera as my first ever MS medication and I do not believe I was ever tested for the JC Virus before starting it. I only had one dose of Tecfidera as I had an allergic reaction to it so I cannot comment on how well it works but from what I've read a lot of people seem to like it.
I was then put on Copaxone Injections and was on them for 6months and hated every minute of giving myself them but it turned out they were not strong enough for my MS.
I am currently having Tysabri Infusions once a month and I was tested for the virus before I started and continue to be tested for it every 6months or so to ensure it does not change.