Botox Trial Begins

Yesterday was my first round of 32 shots to see if it will help my migraine symptoms. Specifically I'm hoping to get relief from my constant dizziness, fatigue and headaches. The shots were all around the crown of my head and two in each shoulder. They stung a bit, but it wasn't awful (though I also have many tattoos.)

I was very concerned about the potential side effects listed on the Botox site, but my neurologist is a migraine specialist and does these all the time. She assured me that they have to list every side effect for every use, not just for migraines. The side effects sound scary... but I'm not having the shots in my chest so I should be fine. So far (24hrs later) I've had a headache, minor soreness, tenderness and stinging. 

No washing your hair or rubbing your head for 24hrs, then when you do wash, do it gently. I made the mistake of towel drying my hair after. Ouch! Don't do that next time. Lesson learned.

My doctor said it could work as fast as one week, or take as long as six months. I will go back in three months to do the whole thing all over again. 

I told my husband on the way home yesterday that I really admire my optimistic nature. Even after everything I've been through and only about 15% of things I try helping, I remain hopeful. Hopeful enough to get 32 pokes in the head, cross my fingers and wish it will help.

A year of struggle

In the beginning of May 2018 I had severe onset of muscle weakness in my arms and legs. I thought at the time it was a side effect from the DMARD I was on for RA. My neurologist believes I have a rare form of Muscular Dystrophy called "Metabolic Myopathy." If you get even more specific he thinks I have "Mitochondrial Myopathy." 

In short it means my energy cells, the mitochondria in my body, suddenly stopped processing energy the way that they should. It also means this can happen to any muscle in my body at any time. It just happens to be affecting my arms and legs right now. And yeah, it's also rare, progressive and there's no cure. I really need to start playing the Lottery.

So far I've had a countless medical appointments, a spinal tap, EMG, MRI, reflex tests, gene sequencing, scraped with a safety pin and in a few weeks we can add a muscle biopsy to this list. I've given enough blood to feed an ARMY of vampires, but it was all worth it just to hear my neurologist say "YES! You have something, and I think I know what might help."

I've been on a high dose of enzymes and amino acids for about 2 1/2 months now. It's literally the only treatment for my condition. I'm learning that the more rare the thing you have is, the less likely there's a current medical treatment for it because there's no profit in it. No profit to be made = no research = no treatment. Fortunately for me the treatment has just started helping. 

Gone are the 4 hour naps during the weekend. I'm actually able to help with dinner when I get home from work and get things done on my days off. My muscles are still much weaker than they were a year ago, but I have far more energy than I have had in years and years.

Today I was able to go out in the garden and work in the yard with my husband. I can't tell you how fantastic it felt to be out in the sunshine moving my body again. I used my trusty Nordic Poles and took lots of breaks. Don't get me wrong, I was very spent physically after and I had to take an Ibuprofen, but I did it!

My husband has been buying me a lot of electrolyte water to see if that helps as well. I noticed my muscle weakness was better for a little while after my brain surgery in September. But I also realized they only let me drink blue Gatorade in the hospital (not water.) I connected that it might have been all the Gatorade that helped my muscles. Heck, I'm willing to try just about anything that can help. But I'm so thrilled we landed on a treatment that I'm responding to and a name for what it is that took so much from me this year.