I started having viral meningitis when I was 21 and have had it 4 times total since then. I thought that's all it was. I guess maybe it still could have just been meningitis and that's all but some of the doctors I saw seem to think it's related to my MS and some not. Then, in between the meningitis, every year or so, I would get horrible transverse myelitis of my right arm, breast, and trunk/abdomen area that lasted about a month each time. I have numbness of my fingers and fronts of my legs and feet which has worsened. I have cervical spine lesion, one brain lesion, and some "black holes" on my recent MRI done a couple of months ago. Along with a positive lumbar puncture showing increased # of o-bands and symptoms, I was put on Gilenya August 2016. I was 32 at the time. I have had one relapse since being on Gilenya a couple of months ago (March 2019) which involved recurrent low-grade fevers every evening for 10+ days, increased muscle and joint pain, severe fatigue almost lethargic with headaches and migraines coming and going. I was given IV prednisone, NSAIDS which did help immensely. Since this, I have still had a lot of fatigue and mood changes which involves a lot of irritability. My new doctor at Mayo Clinic has RX Amantadine which he believes should help with fatigue. I am still trying to get a handle on my headaches/migraines, and the eye pain. I wake up almost every single morning with either just eye pain (which is good because I just take a couple Motrin and go to work) or with horrible headaches and migraines, eye pain, and cheek pain. I get maybe one week a month without any pain which is nice. I am having to call into work some mornings due to the severity of the pain. I take Topirimate once a day that I have been on for about 7 years. Imitrex does not help anymore so I just take Motrin and Tylenol and lay back down. Usually by evening, I have little to no pain. Then I am afraid to go to sleep because I know that I will awake with pain in some capacity the next day. The fatigue and head and/or eye pain has been the most debilitating over the last few months.
I used to work out 5 days a week which included running and core strengthening. The running or any cardio involving legs has been very hard lately due to how tired my legs feel just after a few mins. I want to get back into working out but I am so tired in the mornings (to get up before work to go to the gym) and by the time I get home, I am exhausted. Sometimes falling asleep after getting home.
I am really hoping this new medication helps me stay awake and focused at work as I cannot even focus on reading articles without falling asleep/nodding off or wanting to get up and walk around to stay awake.
I actually want to stop taking Gilenya and Topirimate and see how I do but I have a feeling the headaches might become worse. With the people that have severe relapses after going off Gilenya, I am worried about that as well. I just feel like my symptoms are getting worse even with medication.