Time for a little update! I've had quite a few eventful experiences in the past month worth mentioning:
Finished Prolotherapy:
I had three rounds of Prolotherapy in both shoulders, and one session in my right hip. My doctor that performed these said this was kind of the last hope with what he can do. That was a little bit of a blow to know that if this didn't work, I would need to find another route to take.
So did it work? Well, unfortunately not. There is still a chance I could feel some improvement in the next couple weeks, but that chance seems pretty slim. I am still in pain every day, and worse when I am teaching. Down a different path I go!
ER Trips (Yes more than one):
Two weeks ago while I was teaching, my right leg started to feel numb. Me being me, I ignored it and continued teaching. After two hours, the numbness spread to my entire foot and leg, all the way to my hip. I still had full function, just a 30% loss of sensation. This was also accompanied by a pain in my neck (literally and figuratively).
I went to a smaller ER, where they took blood, received normal results, and was discharged. I was told to return if symptoms persisted or got worst.
Funny moment: When I first arrived, the nurse asked me if I had any medical issues, and I said, "Ehlers Danlos" and she said, "hmmm what's that?" Shout out to all those Zebras!
The next morning, the numbness was gone, but the neck pain persisted.
I am the worst about resting, so I taught again that night. After 1 hour of teaching, my right arm started going numb, soon followed by my right leg. Back to the ER I go!
This time, I went to a bigger ER, with hopes of getting some type of an answer. After some basic tests, more blood, and 4 MRI's, the doctor came in and said everything was normal. Good news was that tumors, MS, stroke, and other scary stuff was ruled out, and this time they at least sent me home with a referral to a neurologist.
Called Neurology, and surprise surprise, they don't have an appointment available until November.
EDS Guru:
In September, I had an appointment with who my PCP refers to as the "EDS Guru" in this area. I spent about an hour with him, and it was one of the best experiences I have had with a doctor.
He walked in and said "I think I can help you!" *queue immediate relief. In our conversation, he was able to basically tell me everything I have gone through without me telling him first; doctors that say everything is normal, being written off because I am young and active, misdiagnosis, and all that jazz.
In the visit, he seemed confident with a plan to move forward. I will be having surgery with him in December on my right hand/forearm to help improve function, strength, and decrease pain. As long as things go well, I will have the same done to my left side. He referred me to different doctors who are all very knowledgable on EDS, and specially the areas that cause me the most pain (shoulders and hip).
Those appointments are coming up in the next month, so fingers crossed!!🤞🏼🤞🏼🤞🏼
Well that's about it! Still going to PT once a week and teaching full time. Still in pain, but still hopeful to find some type of relief!
Be Brave. Stay Kind. Much Love.
Sami