I have been reacquainted with a childhood friend of mine recently and have come to adore him as much as I did when we were kids.
As we’ve been afforded occasional calls, he’s mentioned a few times about these horrible headaches he gets, far more frequently than anyone should, over the course of many years and all the treatments that have failed. It piqued my interest. Recently, he also mentioned his ears bothering him and he’s experiencing neck pain at the base of his skull. Well, as you can imagine, my next statement started with, “I’m not a doctor but….” and I went into brief detail about all I’ve learned here and asked him to get educated and to ask his doc about this.
With him living in a very small, remote community it just further supports that he should explore this path as the odds are quite slim any specialists in his area could willingly consider ES (though true for any size community, as we know…just less so in a remote community)
My thoughts are this: I care so much for him and hate to see him suffer. I’d never want anyone to go through all we’ve dealt with here. But “WHAT IF” this became the answer? What if I was able to help someone become educated and find answers to their pain? And it would all be because of the wealth of knowledge shared here!
For this, I again thank all those who openly and honestly contribute knowledge and experience!
I’ve sent him a link to explore the newbie section as well as the survey as a reference guide. It’s rather bittersweet- one hopes this would be the path he needs to finally find relief yet who honestly wants to find out they have a rare diagnosis?
Anyway- I’m just sharing thoughts and wanted to pass gratitude here.
That’s a great plan, just in case if doctors start veering off this path and ignore his suggestions - a dentist might be really helpful to take a pic he could share with us here. And then our army will see what we can see on it (pun intended)
Yes, I’ve asked him to find a way to get me a copy of his CT so I can convert to 3D and go from there. He’s not too technically inclined so if this is a direction he pursues, with his permission, I may be the messenger here
What a wonderful post, @Tjmhawk01! Thank you so much for sharing your experience & offering help & hope to your friend. I totally agree. It would be great if you’re able to help him solve the mysterious cause of his symptoms, & yet, difficult for him to discover he has a rare syndrome. You are the best possible friend for him!
Sometimes during these “chance” conversations comes an epiphany! I’m glad he talked to you and you may have helped him on his journey of finding the source of his pain.
I sent off a message to my aunt and uncle about my ES diagnosis as my uncle has been experiencing swallowing issues - nothing showing up via ENT scope and I think they gave him a ppi which didn’t help from what I understand. He finds himself choking on some foods and he has the sensation of something in his throat. You couldn’t tell by looking at him but he’s 80yo so not sure how much the health system will pursue it. Always worth a try!
So the doc my friend saw this week and who he showed my thoughts with, agrees that this is a strong potential!
She is familiar with ES which is 1/2 the battle, yet she’s leaving her position, but is still getting him in the hands of someone who is also experienced/familiar with ES. This in my opinion is HUGE!
Exposure and education are everything!
I asked him to call me so that I can educate him on what I’ve learned so he can self-advocate.
My thoughts are such that if this is NOT the issue, then a needle in the hay stack is eliminated. BUT…if this is it, then I can feel comfort in helping someone explore a potential solution.
This alone makes my life worth living.
And I can only begin to imagine the fulfillment that our kind, loving, knowledgeable moderators must feel on a pretty regular basis! It’s these people who deserve a wealth of love and respect for helping us all through this process! May the good Lord bless each of them
Thank you, Tjmhawk01! There is much satisfaction in helping others as well as seeing our members pay it forward. You’ve done a wonderful thing for your friend. I hope he is able to receive a diagnosis one way or the other soon!
My first symptom of ES was choking on food. It was two years after that problem started that I got neck/throat pain that led to my ES diagnosis. The food choking issue was pretty scary. I hope your uncle isn’t ignored by the medical system.
Very interesting! My aunt got back to me and said that my uncle doesn’t think he has what I have, only happens when he eats dry food, and he’s not going to pursue it further. You can only lead the horse to water…
