Hi all! I am newly diagnosed and am in the beginning stages of medication and management of my symptoms. I had a solumedrol treatment back in November to deal with initial lesions and a relapse, but since my doctor has tried to take things slow with me in regards to medication. As of right now I take a prescribed vitamin D pill (because my levels were so low), as well as nortriptilyne for fatigue and headaches.
I go back for another MRI and if it looks worse than my initial scans 6 months ago, I will start on a MS specific drug. The last month or two has been a rollercoaster with symptoms, so I've been in the trial and error phases of seeing what works and what doesn't. Has anyone had success with natural remedies (diet changes, supplements, etc). On the other hand, in regards to medication, has anyone been prescribed something that has minimal side effects?
I am going to discuss it more with my doctor following my re-tests, but I wanted to get a feel for what has been effective for others too! Thank you!
I started on my current DMT (Tecfidera) almost 2 months after being diagnosed. In addition to Vit D3 (5000 iu/day) I take 2 different anxiety meds and use medical maijuana for spacticity and my anxiousdepression brought on more pronounced since being diagnosed (Dec 2016). Been in a "relapse" since Summer 2016 that affected my abilities tremendously and forced me to stop working in Oct 2016...in hindsight my countless ER, PCP and testing for everything under the sun those prior years felt insane because i kept getting told it is all in my head or panic attacks, when in fact it was untreated MS all those years...today i live one unpredictable moment at a time and my MS can make many of those moments feel insane and appear to be far from graceful...it is what it is as i often struggle to make sense of things i should remember and know but have absolutely forgotten, like total life chapters missing off the memory bookcase of my mind. Hope my ramblings shed some light to that question i believe we all asked in the beginning.
Welcome! First the MS society is a great place for info on all the drugs to help you learn which one will be the best fit for you. They also have a lot of other resources that will benefit you.
I got bad for a while and went through physical and occupational therapy which got me back to a baseline. Continuing exercising and working those muscles will help you come back from a relaspe easier. I take vitamin D I don't really know if it helps. I also take provigil which helps me not fall asleep if I'm taking a class and not moving as much as I usually do. I also take over the counter cranberry for my urinary symptoms. I also take biohm a probilotic with good fungus and bacteria. This was recommended by my urologist. Talk to you doctor before starting any of these medication though you don't want them interacting with anything else you taking. I also have gone healthy which I find helps with my energy as well. Good luck!
Welcome! You can certainly also give us a call anytime for support and information- 1 800 344 4867, option 1.
MS Navigator Jess
Hi, everybody starts off with solumedrol first thing. Then, they decide what to try next. Of course, you should exercise and take vitamin D and B 12 every day. I've been on Tysbari for three years, still haven't gotten used to the injections once a month. I was never the type that was going to be able to inject myself every day with all the interferon medications. I have my good days and my bad days. Some of my bad days have really been bad days. But, on my good days, I've been able to go to Spanish class for two years and also able to attend church and occasional volunteer work. I wish I could do more, but that will never be possible.
Hey Carol, you said everybody starts with solumedrol, well I've never had that treatment and in fact I don't even know what it is. Here's my diagnosis timelime: I was diagnosed with Multiple sclerosis in late July of 2017 after a brain MRI came back showing lots of MS lesions and a spinal tap came back positive for high amounts of elevated protein 'o' bands. I am in the USA and I was diagnosed quickly, I saw the neurologist after my regular doctor ordered me an MRI of my brain, on June 28th of last year. He immediately noticed the many MS type lesions and ordered blood work to rule out lymes disease for example. The he orderd an MRI of my cervical spine. I saw him again for a follow up appt and he said my cervical spine MRI results showed no lesions but through that I discovered I had cervical spinal stenosis, which was confirmed in mid August of last year when I saw a neurosurgeon who also wrote me a script for physical therapy. Next the neurologist ordered a spinal tap, I had the spinal tap done on July 18th. When I saw the neurologist on July 25th, he confirmed my diagnosis of multiple sclerosis as my spinal tap results showed high amounts of protein 'o' bands and that combined with the amount of lesions in my brain MRI made diagnosis of MS definate. He also said he believes due to the amount of lesions and 'o' bands, that I had actually had MS for quite some time. Even though I prepared myself for the news cause after reading the symptoms I was 99% sure I had it, it still shook me hard. I remember my mom calling me and me telling he the news as I was sobbing in the office. Neurologist suggested Tecfidera and after doing some research I decided to to go with that Ms medication. Initially it did take some adjusting to get used to Tecfidera and remembering to take it twice daily. The side effects for me were, tingling and electric shock type numbness in my left leg which went away fairly quickly. Other side effects I still get are increased insomnia (but I've always had bad insomia), dry mouth, headaches (that could be just MS of course), increased fatigue, ibs, hair thinning, facial flushing and anxiety. Tecfidera does make you at risk for PML but quite a few MS drugs do. I haven't been on any other MS meds so I can't give you feedback on any other ones.
Solumedrol is a Steroid treatment either 3 or 5 days used for flare ups that are actively happening, and it is used to reduce inflamation occurring and causing the symptoms of the flare up. If you are diagnosed when you arent having a flare up chances are you wont get put on solumedrol, as it can have pretty harsh side effects, I was on two rounds and can no longer be put on it as it made my pulse go from 29 and then shoot up to 180, i was physically unable to walk because of it.
I have been on two DMT, currently on copaxone and it seems to be doing well, minimal side effects for me, I started with Rebif and it was not my favorite, constant flu symptoms and always tired. I would have kept on using it thought but my Liver enzymes tripled. Medications work so differently for everybody. I know people who have been on rebif for 20+ years that love it and swear by it, yet I couldn't do it for more than 3 months. It depends on what you are looking for, there's injections, oral medications and IV medications. It's hard to compare and decide, all medications have scary side effects listed and different stories of the good and bad. It really is more personalized to what works into your life and what actually helps your MS.
As for more natural ways, I have done diet changes, exercise, supplements, and use medical marijuana, and they have really helped me. Diet is a big one for me, I try to avoid nightshades which cause inflammation (tomatoes, peppers,eggplant) and it has helped. It is hard, I love tomatoes and peppers, but honestly anytime I eat peppers I get very dizzy and disorientated and whenever I have tomatoes I seem to get a lot of pain. Finding what works best for you is an adventure, I did a lot of research on what has helped others and then tweaked it to what works best for me.
I hope you find what works best for you! good luck!