Good report from Neuro today! Yay!

After 4 months on Gilenya, I think I've finally got things balanced out. It has decreased my appetite, caused me to lose weight, given me anxiety, and "low mood". He told me that he likes the cocktail I've come up with for my meds. I had asked to increase some and decrease some. He recommends 2000 iu of Vitamin D3.

Now I'm back to abnormal. Have enough going on with migraines, vertigo, and eye pain. Didn't need anything new from Gilenya.

11 Replies

  • Sometimes we know our bodies best!

  • Excellent news! I'm happy for you. 💕

  • Good news Iona, it always does us good mentally to hear good news, enjoy.

  • Good news indeed! Happy for you😀 Thank you for sharing

  • Lona60 this Fancy1959 officially welcoming you to our wonderful chat room. I was replying to your post about your good report from your neurologist. Congratulations we are always happy to hear success stories because we often deal with issues and problems that people need questions answered about. So a big Yahoo for you!

    My question for you Lona is do you think possibly that your eye pain, your vertigo, and your migraines could be side effect caused by your med cocktail or your MS? Did I understand your post correctly that your new cocktail gave you anxiety and low mood which I would have to interpret almost as depression? If I am wrong please explain. If I'm not wrong perhaps it's time to make up a list of questions centered about what we have both talked about here and make an appointment to go back to see your neurologis. Talk to him about the possibity that your MS or the medicine cocktail is causing your migraines, your vertigo, and your eye pain plus your mood and anxiety levels. It's very important that you treat your body holistically. You need to not only keep your MS in check but you need to keep your anxiety and depression levels also in check otherwise over a period of time both of these can cause your MS to manifest with worse flare-ups or even progression. Please keep in touch and let me know if you can get your side effects to calm down and be under control. Remember we are stronger together. Take care and remember don't be a stranger!

  • Hi Fancy. I've had migraines since I was 15 and MS for 11 years, which first manifested as diplopia, nystagmus and convergence insufficiency, all which cause me eye pain. In addition supra orbital nerve pain (the nerve that goes through your eyebrow about 2 inches from the bridge of your nose) and Vertigo added itself in about 2 years ago. I'm trying to type this mostly with my eyes closed because since my last exacerbation in March, all this will ensue after about 15 minutes of using my eyes, bending my head down and/or thinking at the same time. This is being called visual and cognitive processing issues.The new symptoms of low mood/anxiety/ no appetite have come since I started Gilenya. By tweaking my med a little, the Gilenya symptoms seem to be resolved. I'm still left with the 15 minute issue on everything else. I hate meds and am trying to use as little as possible.

    Any holistice ideas for vertigo? I wear a cervical neck collar to ry to deep my head straight.

    Thanks for you concern.

  • I've never heard of the eye/nerve pain you experience, Iona60. I'm sorry. That must be painful and difficult. I suffered through migraines for a number of years when we lived in Hawaii. I attributed it to the heat. I've had only a few headaches since moving to WA, and none as painful as a migraine. I am no longer on migraine meds, either. I'm happy you've found ways to deal with your present symptoms. My prayer is that you find a permanent 'fix' and are able to see/read/work past your current 15 min limit.

  • Isn't it amazing how we all have the same disease and experience so many different symptoms. I don't have any problems walking and I have the "But, you look so good" problem, even from new doctors.

  • I get vertigo also and I have found several things that trigger mine. Spinning around in the kitchen and putting away the dishes. All the turning quickly has given me an episode afterwards. I try very hard not to spin around quickly, if I need to turn around, I just walk backwards or sideways . Another trigger is wiping off a dining table or large counter. Moving back and forth to wipe it makes me feel dizzy. I have to keep my head still and not wipe a large area. I have also woken up with vertigo so obviously all episodes aren't avoidable. I do also get migraines often. I hope that you benefit from my tips.

  • That's great news!

  • Don't we all just love success stories, big or small?!

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