December 10, 2018
Hello everyone, I have recently been diagnosed with MS, and I saw my neurologist and she gave me a list of medications with side effects. It’s super overwhelming and I’m just trying to get a feel for what other people are doing and how they feel about their medication. I have 2 weeks to decide what medication to start. Some of the side effects are kind of scary. I just want to get as many opinions as possible. I don’t know anyone who had MS and I’m feeling very overwhelmed.
When I was first diagnosed about 10 years ago,they put me on Copaxone. Not long into that treatment,I had a bad reactions to it and eventually threw out over 10K worth of medication. (I was happy to do it)
I presently do not take any prescribed medication for MS.I had the CCSVI procedure done twice.
I presently deal with MS through exercise,vitamin supplements and soon to be changed diet.
It is easy to get overwhelmed with all the treatment options out there.
Two of my friends with MS started out taking meds for it.One still does and swears by it.The other gave that up years ago and is following a holistic path.
Read as much as you can,find a good doctor that you can talk to about different options.
I think it is a matter of personal preference and what works for the individual.
Devin Garlit Moderator
December 11, 2018
Hi ald2829! When it comes to treatment (and I do recommend one of the disease modifying medications, because they've been studied, there's data showing efficacy on all of them, for every one person who tries to treat with diet and alternative medicine alone, there are many who end up progressing. It's called alternative "medicine" because it isn't medicine at all. It's snake oil, and it's a massive industry raking in enormous amounts of money these days, all with no proven independent successes. It's all anecdotal, actual studies have been done on many of these, and they have not been proven effective. Anecdotal evidence is hard to put stake in with a disease that is so individualistic between people. I've seen the long term results of people who do not take a medication, and it's horrible. That said, a good diet and exercise is still important along side a disease modifying treatment). The real key is to try one, and realize that you may need to try several before you find one that works. Many doctors these days are skipping right to the infusions, like Tysabri and Ocrevus, forgoing the inflatables, but when you are getting started, it really is a matter preference. For example, some people can't handle injections, some are forgetful and can't handle the pill, and some can't bear an IV, you have to just try them and find out what works for you. Having many options is such a good thing, and one that many of us have fought decades for. Remember, you may have side effects, but you may not too, it's all about finding the one that you can tolerate the best.
December 11, 2018
The scariest part of all the immunosuppressants is the risk of PML. Is this something that I should be so concerned with? I also have two young children and one of them is in school. With the immunosuppressant do people find that they get sick more often?
" I’ve seen the long term results of people who do not take a medication, and it’s horrible."
That is unfortunate.
I have not had any relapses since I stopped taking doctor prescribed,DMT medication 10 years ago and my health is anything but horrible. I of course am speaking from my own experience and wouldn't dream of advising someone to take or not take a medication.
I do what is best for me (after doing a boatload of my own research) and I can't complain about the results. 😀