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October 5, 2021
Well I broke down and reached out to my neurologist...

It went something like this: 

Hi Dr A*.
Was wondering if it's possible to move up my appointment or maybe find some help for symptoms.
I have never felt as bad as I do now. I mean I have had bad days once in a while, but it has been over a month of feeling dead tired all the time, my legs are numb while still being achy and tingling.

This last week it has moved to my hands and it's just horrible. My hands and feet 'hurt' all the time, they are either achy or burning, I feel like there is something crawling under the skin of my lower legs making them feel sort of tense and like the calves are flexed.

It seems to have started around the time of my gallbladder surgery but just keeps getting worse.
I am crying all the time too. Like every day for the past week. But nothing is actually wrong. If anyone asks how I am, tears fill my eyes. I can’t stop it.

I kept thinking this would just pass like it has in the past and I can just deal. But I'm not dealing.

Okay so: is there anything I can do for the fatigue, the constant crying, the burning and tightness in my legs or the pain and ache in my hands and feet.
I'm open to anything.
I just have to feel better so I can cope at work and with my mini.
-K

I went to see him that evening after work. He sent me for 3 days of IV Solumedrol.

IV Steroids work best when given at the start of an exacerbation. I didn’t know this so I waited and waited till I was totally beside myself.
Most patients would have been admitted for an exacerbation that was increasing symptomatically like this. But I have to be home at night for my mini. So I'm going to do it outpatient. Here is how it goes:
Day 1: Head to the city after working all day for Dose 1. Her dad will meet the bus at my house. Get 2 hours of sleep. I had a great Infusion Nurse who explained “When you are laying in bed tonight looking at the ceiling, you can not get up and paint it: Even if you have the paint. You may feel great and full of energy, this does not mean that you can paint a ceiling.” I don’t think that she realized how apropos that example was. I felt horrible driving home.
Day 2: Put the Mini on the Bus. Head in for Dose 2. Get there and things are not feeling better. My legs are jumping all over and my Infusion Nurse tells me to email Dr. A.. My Infusion Nurse also says that since I am not feeling much better already then it might take a little longer to feel positive effects. Once the treatment was done I headed back to my home town to pick up the mini from school. We have a special trip to Portsmouth, NH planned. No, I won't reschedule it. Because I'm a mother first.
Day 3: Put the Mini on the Bus. Head into the city for Dose 3. It is Friday. I have had less than 5 hours of sleep since this started. I was surprisingly upbeat. I don’t feel better, my symptoms are all still there, but they aren’t bothering me because I am hopped up on ‘roids.

Day 2 of IV Steroids. October 7th, 2021

 

Hi Dr. A
I'm am having my second dose now but my nurse wanted me to update you.
Yesterday was exponentially worse than Tuesday. And as I may have said during my appointment, Monday was exponentially worse than previous days. It feels like it just keep doubling.

Yesterday, I fell at school, my legs disappeared and I was sort of light headed dizzy. My coworker was right there and caught me but it was really scary.
As the day progressed it happened 4 more times, but I was always near stable objects so I didn't fall.
In comparison to prior, (since my surgery in August when I think this all started,) I might have felt like I might fall once or twice a day but not as extreme, there would need to be a precedent, (uneven floor, not bracing a rolling chair, stepping over an obstacle incorrectly.) Yesterday there was no precursor... Just walking, slight light headedness, and I feel myself falling.

I finished my first steroid treatment at 5:30 ish and by 7 pm the numbness, burning and slight pain normally isolated to below the knee shot up both legs. My thighs to my toes are achy, tingling and burning. My hands have no change real change in feeling, but my dropping of things yesterday was much worse.

This morning my legs and hands are painful, I've had a couple moments of feeling light headed.

I hope this information helps. My nurse told me I should tell you.
Thanks
K

 


After my infusion finished I headed across the city for another appointment. I would be taking part in a study and this was the first day. It meant that I needed help with care for the mini after school but her dad met the bus and kept her till I was done.

*For the remainder of posts about parenting with Multiple Sclerosis I will refer to my Neurologist and Dr. A, my PCP as Dr. B, and will just add letters for additional care providers.