Neurology and physical therapy updates
“Pain is a forest we all get lost in
Between the branches, hope can be so hard to see
And in the darkness, we’ve all got questions
We’re all just trying to make sense out of suffering, but
You say I am blessed because of this
So, I choose to believe
As I carry this cross, You’ll carry me…”
~Carry Me by Audrey Assad
Hey friends,
Just a short update. Thank you all for continuing to pray for me! I know I’ve said this before, but you are a huge encouragement!!
It has now been more than 3 months since my hip surgery…. Physical therapy progress is still very very slow because I’m not just the typical orthopedic surgery patient. I have muscle weakness from mito on top of that. I also have hypermobility and loose joints from Ehlers-Danlos Syndrome. Hypomagnesemia (low blood Mg levels) complicates things even more since it affects muscles.
The ultrasound-guided hip steroid injection helped the pain somewhat, but my physical therapists can still tell my hip joint is inflamed. We continue to push through, though!
I had a follow-up with my neurologist on October 31st, and she spent 1 1/2 hours with me! Very thankful for her and how she continues to see me even though I’m over 21.
She said I really need to be seen by a geneticist who can look through all my genetic variants and sort things out even better. She’s going to try and get in touch with the mitochondrial geneticist in Pasadena, CA (the dr. that I met at the UMDF symposium this past June) to discuss my case and see where I am on his waiting list.
We also talked about my daily headaches. Although it seemed to be helping, the new medication my pain dr. started me on caused too many side effects. And when my neurologist heard that I was taking this particular med, she got concerned. Because of a CHAT mutation I have, I’m supposed to stay away from anticholinergic medications, and guess what, that med is anticholinergic. So my pain dr. slowly tapered me back off of it. I did hear from her today and will be starting again the previous med I was taking. It didn’t help a whole lot, but anything is better than nothing…the burning pain in my hands and feet has been so terrible! They’re on fire.
My neurologist increased my CoQ10 and Riboflavin, but unfortunately, the headaches are still bad. So we did discuss trying a very strong anti-seizure med that is also used for headaches. If I do start it eventually, I need to first get clearance from my nephrologist because it can cause metabolic acidosis. She also said that it can make you “feel stupid” in that your brain gets cloudy and you can’t think well… : / But she did say this is most noticeable with the dosage for seizures (which is much higher than the headache dosage). If I try it next month or so, I hope I don’t experience either side effects! I just would like a break from these chronic headaches because it’s rough on top of all my other symptoms.
This will be my last blog post until December because the rest of this month is super busy with Thanksgiving, continued physical therapy appointments, and follow-ups with Pain Medicine, Orthopedic Surgery, and GI. I’m also planning on selling jewelry from my Etsy shop
at my church’s annual Christmas boutique this coming Saturday. It will be my 3rd time!
I just want to close with this beautiful verse I read from Isaiah last week. So uplifting and refreshing. The Lord always goes before me and carries me through the pain!
Happy Thanksgiving, friends.
“In all their suffering he also suffered,
and he personally rescued them.
In his love and mercy he redeemed them.
He lifted them up and carried them
through all the years.”
~Isaiah 63:9
