About Me

  • Gender Female
  • Age N/A
  • Relationship Married

My Story 0

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.

Interests

Living Well with MS Employment and education, Emotional support, Healthy living, Relationships and intimacy
Getting Involved Walk MS, Bike MS, Challenge Walk, MuckFest MS, Advocacy, Volunteering
Research Research news
Hobbies and other interestsRunning, reading, working out

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