I'm miserable and have been in an active phase for a month. I was diagnosed 2 weeks ago and have tried 5 days of IV 1000mg Solu-medrol and am currently on Gabapentin (3 pills a day) with no relief. My questions are how long do active phases usually last ? What treatments have worked for you to get out of it?
Friday they are talking about administering Tysebri but doesn't that keep it from relapsing? Will it help with the current symptoms too?
I am having zapping pain on my tongue, in my mouth, fingers, arm. Numbness on entire left side from head to toe, walk like I'm drunk, loss of hearing in left ear, & extreme vertigo that keeps me in bed for days. The eye pain and headache has subsided.
Any feedback or suggestions are welcome.
Thank you!
Written by
Frazzled03
To view profiles and participate in discussions please or .
I can't give you good answers to anything. Exacerbations last as long as they last, although the Solu-Medrol should help reduce the long-term damage and shorten the length of time you're dealing with everything. The Gabapentin is to help with some of what you're feeling right now. The Tysaberi is a Disease Modifying Treatment (DMT) to help prevent future attacks.
The last time I had a bad spell, even with the IV steroids, it lasted about 3 months. All I can suggest is to treat your symptoms as best you can until they go away. Get plenty of rest and don't push yourself.
Hi Frazzled03 🙂 & welcome to this forum ❤️. I don’t have an answer to how long exacerbations last? But you are on the only medication used for exasperations, i know of. As for tysabri, I would highly recommend it, having been prescribed that for 7yrs.I’d still be taking it, if I hadn’t come up positive for the virus ☹️.
I agree with with Noras Mon about exacerbations. I was on tysabri for 6yrs I loved it until I tested pos for the jcv virus.I hope it works for you like it did for me.
Hi Frazzled03, and welcome to the group. Unfortunately, an M.S. flare up can be a stubborn thing. It can disappear in a few days or take months. There is no way to predict it. You are taking the "typical" go-to treatment for an exacerbation, the 5 days of Solu-Medrol. I can tell you from experience that sometimes it works wonders very quickly, and sometimes, while you may see symptoms get less severe, they may linger for a while. Over the years, I have done the 5 day Solu-Medrol treatment four or five times for flare-ups. I know it is terribly frustrating, especially if you are newly diagnosed, to have no concrete answers.
Please reach out and let us know how you are doing and feel free to ask any questions you may have. I hope you start to see some relief soon. 😊
Welcome, Frazzled03! Everyone is different, but I missed about 8 weeks of work, then slooowly started feeling better. There was a lot of 'ugly crying' at first. That grieving process was nightmare-ish. I am sending a link for the newly diagnosed. Dr. Boster taught me so much in the early months. I hope you feel better soon. 🙏youtu.be/ERrccVrtFGk?si=tA4...
Welcome to the group! I’m so sorry you’re going through this. My symptoms took a few months to resolve completely, even after IV steroids and starting a DMT (MS treatment). I slowly got better. Unfortunately, everyone is different with MS, so it’s hard to say how long this will last for you. Hoping and praying you’re better soon!
I’m so sorry you are having a difficult time. Ask your MS specialist if he or she thinks Tegretol (carbamazepine) might help the zapping pain. It can be very effective.
My heart ♥️ is with you as you experience this moment. Try to journal on symptoms and medications as they need to perhaps change. Get specialist advice and understand we need to be open and aware of of where you are today.
I meditate and let music help me to listen in pain, what new can help? Find new resources in area.
Hi! I am so sorry you are going through that. MS is a Monster that we try to hold where it is but do not have a way to defeat it. I was diagnosed in 2018. I sadly do not have answers but I can tell you some things I have figured out for myself so far. Ice packs on my back help sometimes, sometimes it's a heating pad to relax the muscles, but I have to be careful because heat can also make things worse for the day. Cryofreeze hemp roll on has been a godsend. Tens unit and messaging gun is a necessity. I def couldn't do it without help. I recently started having the face zaps, was diagnosed with trigeminal neuralgia. At first they gave me carbamazepine for that but I had bad side effects so they changed me to gabapentin, which I am now up to 3x a day. If yours is trigeminal neuralgia i would suggest stopping OJ, bananas, and as little caffeine as possible because they aggravate it. My DMT is Tysabri, have been on it for 5 years now. When I get my infusion I can feel a small difference about half way through the infusion. After all this I can tell you everyone is different, it's part of why we have trouble fighting back. You will have to learn what works for you and the only way is through trial and error. I do suggest a few things. If you smoke stop smoking. Make water your drink of choice. Get enough fiber. Less sugar in your diet the better. Knowing where your lesions are might help, it helped me but I also have researched A LOT. I hope these words help you, I am sorry I can not be of more help for you. I hope you find some relief soon.
I wish we all had a magic wand to make you better. But as everyone has said, you are receiving the best course of treatment. And I had a great experience with Tysabri for about 7 years until I became positive for the JC virus. I really believe that medicine is why I can do everything I do today that I never dreamed I would do again. Ride a bike, go hiking, etc. I still have some zaps like you described, but I can tell you that your neurologist should definitely be able to help you with that. Let us know how you are doing! ❤️🥰
That is a lot, you must be frightened. Lots of great advice here. When I was newly diagnosed and frightened I started doing progressive relaxation and even creative visualization. They relaxed my body and calmed my mind, at least for a while. It sounds like you are in good hands. I really feel for you. 🤗
Hello, Frazzled03. I'm so very sorry to hear the awful things that you're going through. It really isn't fair that an MS beginner seemingly got an advanced level relapse! ☹️ I really feel for you. Your doctor sounds like they are approaching this in an appropriately aggressive manner, which is not always the case. In MS, certain cells in your blood mistakenly attack your brain and spinal cord. Both Solu Medrol infusions and Tysabri slam the blood/brain barrier shut, so those cells can no longer attack you, which is helpful to know. Unfortunately, it takes a while - too long - to heal, as others have mentioned. I urge you to watch the Aaron Boster video that MollyAbigail posted, and check out his other videos on YouTube, if you can. I know vertigo can make it hard to look at screens. One of the most important things that Dr. Boster teaches is to advocate for yourself by letting your doctor know which symptoms are most bothersome. A big part of treating MS is managing symptoms, so that's a big part of their job. If they give you a medication and it doesn't work, let them know, because there may be something else that would.
Finding ways to pass the time and keep your mind occupied will help you. Prayer, if you're so inclined, calling a friend, or maybe listening to audio books might be helpful. This will pass, and hopefully the Tysabri will keep you from having any/many more in the future. I wish you the best, and I hope that you'll keep us posted on how you're doing! ❤️
for me getting on a dmt was life changing! Symptoms didn’t go away completely but quickly subsided tremendously. This was my experience years ago. Obviously it is not a prediction of what you may experience. Good luck! Sorry about your diagnosis. MS is NO FUN and can be challenging but it can be lived with
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Update on "house arrest"
Frustrated. 
Experiment w/ diet & exercise over Holidays
Frustrated with old Neuro/different headache
