Welcome to our crazy 😜 group of MS’ers! I was diagnosed over twenty-five years ago with RRMS. What a scary surprise 😳 I was also diagnosed with lung ♋️ and during the surgery for lobectomy I endured a surgical stroke. I was able to get into information and become very active in recovery. Over the last twenty five years I have been on seven different DMTS as ones quit working I moved on to the new and improved ones as they came out. I use a AFO on my right foot but still upright and driving 👍. Yes I have fatigue and pain I deal with but very happy where I am right now. One of my very close friends chose not to due DMTS until she had developed major problems after eight years and is confined to a wheelchair 🦽. My personal opinion is get stared on a DMT to slow the progression of MS. Yes we are all different and have different problems with MS but almost all are related. Good Luck with your decision 👍🙏😉 Ken 🐾🐾
I think the goal of any DMT is to slow progression. Some folks have actually seen some symptoms be reduced or go away altogether after being on a DMT, such as Ocrevus. I imagine you will see a reduction in symptoms as your relapse resolves, too. My relapse symptoms lasted for months, but have gradually resolved into what I have now. Those symptoms are a roller coaster with some new ones thrown in to keep things interesting. I did not have steroids or other treatment like acthar gel at the time of the relapse and did not start a DMT for over 3 months after the diagnosis.
You are so right about us being different with our MS courses. We definitely are unique and fascinating!
Do you have a primary care physician? When I was first diagnosed it was because my MRI showed optical neuritis along w other brain lesions. She immediately prescribed IV steroids that I needed to take for three days and then oral steroids there after to reduce inflammation. In the meantime she referred me to a neurologist (MS specialist) who after seeing my MRI said you definitely have MS; and here we are. I know the course of treatment is if I have any new symptoms lasting greater than 48 hrs, I’m to contact her for possible steroid treatment and I am on a DMT. Prior to DMTs, steroids were the favored method of treatment. Maybe something to consider asking your dr about while you are waiting to see a neurologist and continue to have new symptoms as well as ongoing ones.
Good morning yes, I have my physician who ordered the mri and after that told me ms. He has referred me to a neurologist two weeks ago and still waiting to hear from them. I have called the neurologist, but that hasn’t helped. I did ask my primary about starting treatments while I wait and he said no.
Easy, NO the treatments do nothing for your symptoms/ The Disease-Modifying Therapy (DMT) slows the progression of your ms, that is all. For symptom treatment you will need other medicines.
Yes, DMTs are designed to hopefully slow progression, minimize attacks and further disability...however, I can attest that Ocrevus HAS reversed some symptoms for me. According to my neurologist and the rep at Ocrevus who sets up my infusions, Ocrevus works on inflammation by holding back part of the immune system (B cells) and yes, it is possible to see positive response in some clients.
I was using a cane for three years before O. I lost the cane after my second half-dose and I’m still cane free! I’ve had two half doses and one full dose to date. My neurologist has placed me in a category of “early responders” to treatment writing “stable to improved” in his reports. He even said that my heat sensitivity MAY improve, as well...so, I remain hopeful as subsequent infusions continue...but only time will tell! Hope this helps ...many blessings🌺
I just began Ocrevus a few months ago and I am getting my next infusion next week. So far this has helped to reduce my symptoms and from my last MRI the hasn't been any new lesions or change. It all depends on what medicine you get on because Tecfidera didn't end up working for me but it might for you, like you said we're all snowflakes.
Great news for you and encouraging for me. Now to get this neurologist to get me an appointment Starting my third week waiting for them to call. And yes, I have called them.
When I started my meds I definitely got better. I used to fall all the time and I've only fallen once in nearly 6 years. This has been my experience anyway.
If an MS diagnosis is confirmed the best thing you can do to get good sound factual information abut MS is to sign up for the free online MS MOOC course. The next one is scheduled to start on 20th March, runs for 6 weeks, and it is absolutely worth doing.
DMT‘s will not help you feel better but they will stop your progression. That may be why you have not been placed on a DMT. They’re reluctant to show you your MRIs I think because they don’t want to freak you out. When I was diagnosed, I had to get a copy of my own MRI And then, when I looked at it, I had no idea what I was looking at when I asked my doctor how many lesions I had he says I don’t know. I said how long have you been doing this? 30 years. What does your gut today 50 to 75 but they have become black holes. Honestly, I don’t think they want to freak you out but the fact that they’re not progressing is great as for your numbness that may be Renaud syndrome. I have it so bad I have to put my hands under hot water before being hooked up to a pulse ox meter. Don’t let the snowflake sting bother you. It happens to all of us within ass people don’t understand what they don’t know I will be praying for you.
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