Warning: This post is a long one, and it’s extremely vulnerable. I am processing a lot right now.

It’s been a month since I was diagnosed with MS. When I received that diagnosis, my neurologist explained that I had both old and new lesions going back approximately five years. Since then, many people have asked me if I can see signs looking back—and the answer is a resounding YES.

I have what is called Relapsing-Remitting Multiple Sclerosis (RRMS). This form of MS involves flare-ups or a relapse of symptoms, followed by periods of partial or complete recovery (remission). Before I knew it was MS, I called these flare-ups “episodes”.

Here is some information I found on BrighamandWomen’s.org-

Relapses—often referred to as “MS flare-ups”—typically come on quickly, developing over a few hours or days, and last a few weeks. Symptoms may last as long as two months.

The relapses I describe in the following journal entries lasted from April 2023 through August 2023. I use an app called Daylio to track my mood and health, and I also write a very short journal entry there each day. Last night, I went back through my app and copied every entry related to these mysterious episodes that I now know were MS flare-ups.

Altogether, the entries totaled over 3,000 words—pages and pages of documentation—so I’ve done my best to narrow them down. It’s only a small fraction of what I journaled, but it gives a glimpse into my world with undiagnosed RRMS. I put the symptoms I was having in bold and the excuses I made to try to dismiss them in italics.

April 17

This journal entry is for yesterday at 2:50 pm through today at 12:30 (and maybe beyond). I had horrible episodes back-to-back of trembling and anxiety for 11 hours. It’s the worst thing I think I’ve ever experienced. I would do anything to get my old life back. I went to the ER, they think it’s supplements. I thought so too, but now I’m shaking again. Maybe I’m just cold. Anyway, this is so horrific I can’t even begin to explain how awful I feel.

April 21

1:02 pm I am having a full blown panic attack in the Dr office and I am mad again and feel defeated again. I told Jeremy and my mom I’m fine so now what!?!!! I’m clearly not fine but I want to be more than anything in the world!!!!

May 12

I do get some tingling in my legs, but it’s not happening now and it’s nothing major.

May 22

I had a great day! Everything was fine, but then I felt pressure in my ears, muscle tightness, and warmth like before. BOOO. It started about 30 minutes ago (around 8:30 pm), and I’m writing to distract myself and get through it.

Update 9:15 pm: I am still shaking. I have to pee a lot from drinking so much water. Maybe that’s stressing my body more than usual. I also have a weird taste in my mouth—this always happens during my episodes. 😣


9:56 pm: Thank the Lord, I appear to be coming down from the terrible sensation. Hopefully the worst is behind me.

I’m just writing it down to document but woke up at 12:00 am shaking. Gripped with that creepy crawly feeling. 😢 It makes me sad because I am on my medication. I am trembling and I feel nauseous . 

May 23

I had really really bad sleep. I was up until about 4:00 am weaving in and out of consciousness trembling. Always upper body not so much my legs.  Today was so hard because of my relapse or whatever you want I call it, so I’m really scared and on edge which perpetuates ANXIETY. Ugh. Viscous cycle.

May 27

I am very happy to report that today was a good day. I felt slightly tingly at times, but I’m not going to freak out about it.

June 5

Unfortunately, I did have some shaking last night. It was real and intense, but I was so tired and took melatonin, so it only lasted about ten minutes. That’s good news.

June 9

 I’m really thankful to be feeling like myself again. I am hardly thinking about my episodes or hormones at all.

Update- at about 9:00 pm at life group I was sitting at the table listening to my friend talk and I felt slightly warm and light headed. I was so uncertain about what was happening! My ears did the thing and I thought for sure I was going to have an episode. I don’t even like thinking about it because it made me scared and confused. I am documenting it though just in case there is any significance. Hopefully just a weird fluke that was really all in my head.

  Update 3:25 am unfortunately and I really hate admitting this but I had some weird feelings tonight so I’m not too surprised. I got ready for bed and then dealt with an anxiety attack when I went to bed. I feel a lot if trembling/tension in my neck right now. I’m sure I’m probably just overly tired. The blankets feel cold at first so I have a theory that that is a trigger.

July 2

It’s been 10 days since a true episode. I’ve shaken briefly here and there, but without the ear fullness or weird taste, so I don’t count those. I’m aiming for three weeks, that would be a record.

July 3

I think my old issue of ear fullness is back, which makes me a little dizzy. I was really not myself for a couple hours.

July 23

 I know I’ll be okay, but sometimes my brain gets foggy and I feel jittery or my breathing feels off. I hate that.

July 27

Tingly legs freaked me out, but overall it was a good day. I’m thankful I’m not as bad as I was in April.

August 6

Hands shaking. Body felt jittery.

August 8

I had regular stress feelings and body aches, but none of the weirdness I’ve had for the past five months. Praise God for this breakthrough. I would be so happy (and admittedly confused) if all the shaking and panic were finally behind me.

That was it. After August 8th, it was behind me for a couple of years (for the most part).

When I did my 2023 recap on Messy Mom, I mentioned that season and wrote:

“I still don’t even have a diagnosis, but I am thankful that whatever was causing shaking, anxiety, insomnia, and heart palpitations from April to August is gone now. Praise God!”

Arghhh. I hate reading that because I thought it was gone. I was actually in remission and living with undiagnosed MS.

I’m sharing this openly because I know there are people who have experienced the same thing. You rejoiced in healing, only to find yourself back in the same place again. I don’t have all the answers, AT ALL, but I know that God is good and never fails.

2 Corinthians 12:9–10 says:

“But he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me”.

I felt I needed to share. Maybe it helps someone recognize the need for medical testing, or helps someone feel a little less alone, or gain a better understanding of what living with an autoimmune disease can look like.

Honestly after all I’ve been through I am truly grateful to finally have answers to what was causing all of those mysterious episodes. I am also thankful for a peace that passes understanding.