This is the first time I’ve posted here; but have truly enjoyed and taken comfort in all that I’ve read here.
I was diagnosed almost 2 months ago (symptoms for a few years.)
I have had a round of IV steroids and am now on week 2 of a prednisone taper before I return to Doc to begin a DMT.
My main question is; as I understand, the DMT will try to help prevent future damage; but is not going to help me with symptoms. I’m still having symptoms (altered sensation from waist down and numb feet/muscle weakness/bowel issues) that I began with..... have had for 3 months now.
Guessing this is going to be permanent?
Luckily my mind is (pretty) good; after my initial grief period the Lord has supplied peace beyond belief. Thank you to anyone who takes time to read/reply
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4krobh
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Hi 4krobh sorry to meet you under these circumstances. I have never been on on a dmt but if you go on the MSAA website I am sure there is lots of info about dmt’s. I am sure someone will help you. At least you have found comfort, blessings Jimeka 🦋 🍫
I have PPMS and live in the uk. My doctor told me from the beginning that there was nothing they could do for me and as I am so sensitive to drugs, he didn’t want to chance it. I found out October 2010 but they say I probably had it 20 years before diagnosis. Let us know how you get on. Aubagio and Ocrevus seem to be the favourite ones on here. 🦋 🍫
From my understanding & as always, everyone is different & dmt's work differently for everyone. DMT's are supposed to help prevent the progression of lesions. I don't think necessarily that they help with symptoms. When I have what your describing in your legs, the numbng & tingling or any symptoms. I usually end up getting 1-3 days of steriods which helps me with them. For the most part, clearing up those symptoms. Sometimes, for a while, sometimes shorter periods of time. Unfortunately, there is nothing chiseled in stone that tells us what's going to work & what's not. I'm sorry. Make sure you communicate with your Doctor, how your feeling, write down questions you might have (so not too forget), never hesitate to contact your doctor if something doesn't "feel" right.
Thank you MaryMargaret1966! Praying for divine intervention here; would SO love to be able to feel my feet again. I’m thinking after 4 months though it’s just not going to happen. Wonder if Dr will diagnose PPMS instead of RRMS.
I have RRMS since I was diagnosed 2009. It's certainly been a journey. Stay strong my friend, allow yourself up & down times. We are all here for you!!!
I’m so glad you found us and thank you for sharing.
It took many months for the symptoms from my first relapse to relent or decrease to a “regular” roller coaster.
I believe you are correct that the main goal of DMTS is to reduce the number of new lesions which can reduce worsening of or the addition of new symptoms. They don’t actually repair damage from old lesions. That said, I’ve ready many accounts here from people using Ocrevus in which they report improvements in their symptoms, so we never know.
I think the best we can do is to eat well, study DMTs and supplements carefully, and remember that we each have our own individual course. You already realize that, as a believer, God is our sustainer and comforter.
Please let us know what DMT you choose and how you’re getting along.
I sure will; thank you so much! You all have been amazing! Thank you to all of you for such a warm welcome. I feel blessed to know I am not alone in this journey.
Oh, 4krobh! You are in a hard place right now - we all have been there done that! Here's a little bit of light at the end of the tunnel I woke up one morning with double vision and my ophthalmologist sent me to a neurologist, who suspected MS, a tumor or an aneurisym and immediately sent me for an MRI. It took almost 2 months for that double vision to subside - and that was 30 years ago. I was on Avonex and Beta Seron for years until I moved into SP. I have had my ups and downs over the years, but I have a good life - maybe not the life I had planned, but still good, and so can you!
Thank you SueAB!! I am determined to not let it get me {completely} down! You all have been amazing already; thank you SO much for the encouragement. SO glad I have found this support.
My suggestion would be to ask your neurologist a lot of questions. Take notes with you. I think MS is so unpredictable and varied from one person to the next, there is no set answer. Some folks will have a relapse or new symptoms and then after treatment, they completely go away. Others find they get better than they felt but not completely. Others feel just a gradual decline, etc., etc. I'm sorry you have gotten this diagnosis. It can be confusing and scarey. Stay as active as you can and be proactive. If you don't like your neurologist, change. You need somebody who will listen to you and answer questions. Good luck with your journey. And, yes, the peace you are finding with God will be the greatest source of strength of all. At least, it has been for me. Hang in there and best wishes.
Thank you Tinker-Belle!! I actually LOVE my neuro; he is a MS specialist and treats 2,500 MS patients from around the country. One of the best in the world as I read and hear; he is SO very encouraging. I am blessed!
Where, may I ask, do you go? I used to see a specialist at the MS Center in Atlanta. He was awesome. I imagine retired now. That was very important to me when I was first diagnosed. Quality of care is, of course, still important. I'm glad you've found a good one!
I'm on my 3rd DMT. The first made my white blood count drop like a stone and the second one I was allergic to. The one I'm on now HAS actually helped some of my symptoms. I used to fall constantly because my legs would suddenly stop working! I have not fallen once since I started meds. Let's see... about 4 1/2 years? My own theory is that the myelin sheath will actually regrow if it's not too badly damaged so I think that once it stopped being under attack, it healed some. I may be wrong but then again...I stopped falling!
This is such great news!! THANK you for sharing!!!! And PRAISE GOD the falls stopped! Hallelujah!! Do you mind sharing which med has been helpful? (I know; we are all different!!)
I am currently on Aubagio. I don't think it's that medicine that works for everyone, but it works for me. Just remember that if you have one that gives you either a bad reaction or doesn't work, keep trying!
I have read and replied to your most recent post then came here to read this one. I glad you've decided to reach out to use. You will find a lot of support here. ~terry
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