I’m trying to juggle managing a bunch of stuff at once, which probably led to my flare yesterday because I’m still stressed over the original diagnosis. I’ve turned to smoking weed to relieve the pain because I can actually function on marijuana as opposed to Oxy, which I was taking for unrelated pain. I’m still not sure where to go from here.
I can relate to your being baffled with a brand new diagnosis. From here??... all you can do is live each one unpredictable moment at a time as it comes along. You planning on getting on a DMT? As a side note i too use cannibus to help with my spasticity and anxiousdepression...saves me from being on a couple additional pharm drugs, which all can have nasty side effects...at least i know what the weed side effects will be, relatively minimal compared to other options. I take Tecfidera, been on it since Feb 2017 and it has seemed to do its job given my last two MRI's show no change or progression. I got lucky in that Tecfidera was my first DMT and happened to be tolerated well.
I connected with a few people from this site who "understand"...who have been "here" and done "this". Be kind to yourself, ask for help (easier said than done if you're like me) and learn all you can about MS. There will be lifestyle changes to make you will find. It's all about the stabilization on every level: physical, mental, emotional & spiritual. It won't happen "overnight"!! One of my mantras today is: All i can do is the best i can today...what the H E double hockey sticks else can i do. Most important: don't feel you need to apologize for YOUR MS failings and shortcomings, it is NOT your fault.
Hang in there because you don't need to be alone thru this!!!!
I was diagnosed about 8-9 years ago. I was about 21 I was going through nursing school. I did get bad for a while but it was because of a bad doctor who didn't know what he was doing. I ended up at a center that specializes in MS. I was wheeled in and walked out 11 months later. I now work as a nurse full time. I am on treatment and haven't had a relapse in 6 years. I do not have pain so I cannot understand that part. I do not do any drugs not prescribed because they do drug tests where I work. I went through physical and occupational therapy to help me get back to a good place where I can work but it was a lot of work. I also saw someone to talk to because being diagnosed with a chronic disease can really impact you It's just hard thing to accept. Good luck. I hope this helps! Gabrielle
It's wonderful to hear that you are doing so well. May I ask what kind of treatment are you on, that you have had no relapses in 6 years?
I was diagnosed 8 months ago, and it was a hectic period in my life, just had gotten a new job at a hospital, went to the doctor after a 12 hour overnight shift for numbness (I've experienced it since I was 9- now 22- so didnt think much of it as its always been brushed off) then next thing I know Im getting sent to the ER then checked into the hospital for a four day stay. I ended up having to quit my new job as the steroids made me so weak and unable to work 12 hours on my feet so then I was also dealing with trying to find a job on top of things. Its rough the first few months and honestly it's still pretty rough some days, treatment options are hard and dont work the same for everyone............................ I would say start off with finding a good MS specialist, do your research on them cause there are some that truly care and some that force drugs in your face and thats it. Talk about treatment options that work best for you, this can be an adventure, Im starting my 3rd drug as the first 2 did not react well. Know that there are a millions side effects listed and take that into account but dont ponder to much on it, every MS dug out there has a risk. Depending on where you live think about getting a med card if not done already, My neuro gave me one upon first visit. I use CBD for pain, oil and flower, as well as ointment which works great for MS hugs, numbness and neuropathy. I know for me Diet helps out a lot. Some foods trigger me (pepper and tomatoes give me pain and dizziness due to them causing inflammation), and find a vitamin regimen that works for you as well, High dose vitamin D is important with MS. I stocked up on material on MS and what has worked for some people--but I like to be informed for some others that makes it harder for them. Most importantly just find some time to cope first, I hit the ball running after being diagnoses (almost excited to finally know what was wrong withe me) and that ended up giving me some pretty terrible emotional breakdowns down the line. Dont be afraid to ask questions or seek help, there are support groups everywhere and this site has helped me a lot. Everyone with MS is different, we all experience it a little different, but in the end we are all here living with the same thing and that creates a pretty tight community. Good luck! You will get through this.
I work for the federal government as an attorney, so cannabis was initially not an option because I see a Navy physician. Calfornia legalized it for recreational use about a week ago so I was able to pick some up. I’m on Betaseron and Deltasone in addition to watching what I eat, and I’ve heard a lot of people say Betaseron isn’t as effective as it used to be, but I haven’t relapsed yet. My doctor put in a recommendation for me to see a specialist, but I’m waiting for TRICARE to do whatever it is they do.
Everything works differently for people. My neurologist has been on Rebif-betaseron for 20 years for his MS and he is doing great on it. I could only do it for 3 months as it was messing with my liver. Hope everything works out for you
Hi there...so I guess I am the old-timer :-) replying to your post, having MS for 29 years. Everyone in the MS community, or any chronic/terminal medical community, I'm sure can relate to how you're feeling right now. And everyone initially has their own diagnosis reaction. When you couple that with life and as you said, managing a bunch of stuff at one, something had to give. Not wanting to overwhelm you with things you should do some things that worked for me..
1. talking to a professional counselor to help me get a grip on my feelings about my diagnosis, the uncertainty etc and the other things in my life that were thrown into the mix as well. And to help me figure out "where to go from here."
2. making the decision to learn the whole truth about MS through re*****ble sources.
3. listening to my MS doctors about my DMT choices as they can down the pike over the years but always learning about them myself and being the final decision maker
4. deciding to be 'the healthiest sick person' :-) I know by taking care of myself mind, body, spirit...went back to school, started exercising to keep my muscles strong and started practicing meditation to keep the stress of life and yes, MS in check.
Maybe I was the only one back then that felt that I had lost control and just couldn't get it back, that MS would dictate my life. I was wrong. I control my life...my life with MS. You control your life. It helped me so very much when I decided how I was going to live that life.
Oh! Personally...I would strongly suggest you get on a DMT. I will forever be thankful for Copaxone. I am still one of the 'healthiest sick people' I know :-).
I think I have been on Tysabri for three years, don't know whether it helps me much. I'm secondary progressive. I'm in a lot of pain from MS, as well as having chronic back pain. I would love to be in a state that allowed cannabis. People say that it does wonders for them.