Hey All About Me,

All about me, my name is Lynn Rose. I am a mother of two, being a mother is my greatest role. I was diagnosed with multiple sclerosis in 2020, after over 9 years of the doctors saying it’s all in my head. I should have been diagnosed in 2012 when I was extremely sick and admitted in the hospital. I had all the tests in 2012 MRIs, spinal tap, and blood and still made me feel like I was crazy. I got really sick again at the end of 2018 and started going to the doctors again.

Migraines

They did several MRIs sent me to nero, where he said it was my migraines, which I do suffer from. I never went back to him, my vertigo was at its peak, and my ability to walk was slowly declining. I went to primary, where they thought I was seeking drugs and dismissed me. That’s when I asked if they could send me to an ENT, I had to ask them for the dam refferal. I finally saw ENT months later where he sent me for his own set of MRIs and hearing tests. When I finally came in for the results again months later, he’s the one that said it could be MS.

Possible MS

I didn’t really have any idea what MS is or what this meant. He of course said he couldn’t officially diagnose me, only a nero could. So he referred me to another nero, made an appointment months out. When I first met Dr. Jordan he was a complete asshole to me. Looked over all ENTs tests said well its probally your migraines!”” Are you taking any medications for them? I said no, he then says “well what could you expect then.” Dismisses me like all the rest, doughted me like all the rest, made me feel crazy like all the rest.

More Tests

He then tells me he needs his own MRIs a more contrast one, a spinal tap, and new bloodwork. I really did not want another spinal tap since after my first one, I got that horrible spinal migraine. During this whole diagnosis, the process was difficult. Covid just started, which made sceduling far out. I made my MRI and spinal tap appointment and did my bloodwork. As I waited several more months for my results in the meantime I researched and researched. I noticed that I had several of the symptoms listed. The more I read, the more I thought I really might have this. “YES, I got that spinal migraine again, and it was horrible.”

Yup You Have Multiple Sclerosis!

I went into that appointment, and he compared ENTs MRI and his, and there were several new lesions. When he looked at me and said, ” Yes, you have multiple sclerosis.” As I sat there in shock alone, not really comprehending anything else, threw out the appointment. Now that I had my diagnosis, it was now time for medications. Before I could start any medication, I had to get more tests done and be cleared. Heart test, vision test, and blood. In the meantime, I was on a week of steroid infusions.

Starting Medications

After being cleared, I had to go to a faclity to be observed for 8 hours when I took my first pill “Gilenya”. They had to check my heart prior to taking pill and after the 8 hours. I went home and now take this pill every day for the rest of my life unless they change to a different form of MS treatment. Threw out the first year after being diagnosed. I called him about any new symptom I might be dealing with. My symptoms eased up over that year to a stable point, I have had no new lesions on my MRI since staring Gilenya.

Very Invisible Disease

I started to call my nero less and less and just live with the reality that this is a very invisible disease, and it comes with a shit ton of symptoms. Some come and go, some stay a while. Some I can deal with, and some are too severe to move. I got deppressed, I had suffered from depression my entire life but never treated it with meds. I was thrown several different medications for the many symptoms. All of them had side effects, and coming off of them was a nightmare. The withdrawal process had me looking like a tweaker!

Spoons

I got myself off of several were now im down to 6 pills a day. I am still taking depression meds and one that is suppose to help with fatigue “dont think it does” I have learned to suffer in silence and that all of my symptoms are very invisible to the world. I have learned that people dont care and can’t understand something they can’t see. I have learned that each day, I get a limited number of spoons, and most days, I never have enough. I have learned that whatever I do, my body will take it out on me with all it has. I have learned that every day is an obstical course to get threw. In the end, with all the extreme exhaustion, I still will not be able to sleep.

Writing

I show my journey living with multiple sclerosis and any knowledge I pick up on my way. From what helps, natural remedies, and medications. I have suffered from depression my entire life, and writing has helped me a lot. I started writing poetry in 2022, where it has helped heal my inner child. In my poetry, you will see my inner demons what’s underneath all these scars. I show you a glimpse of my pain, past and present loves and losses. I show you my deepest voice that no one will ever see.