Thank you for all the information.
I’ve certainly learned a lot in a few hours on here and on the fb page.
As you know, the symptoms are very unpleasant. It feels like I have an alien living in my face and I have extreme discomfort in areas where I have never had sensations.
My tongue is frequently parked crooked and my mouth wants to hang open.
I never even mentioned it to my primary care nurse because it is such a hodgle podge of symptoms and I have been using massage, acupuncture, osteopath, physio to deal with the symptoms. There is a spot on my left shoulder that my chiro. can’t budge. Same side as all the other symptoms.
I’ll send him my xray because I am seeing him today.
Today is the first step in getting a soft mouth guard for my upper teeth to try and stop the trauma that occurs inside my mouth, some of the issues are from 40 years ago when I had my 4 impacted wisdom teeth removed.
I need to get an eye patch because sometimes I need to close my left eye, it feels like someone hit me across the face from top to bottom across my eye and cheek close to my nose, but also around my ear.
I really appreciate the info and support on this page. I woke up this morning ready for the fight, and I’m looking at it like an adventure. I let my passport lapse because of politics south of the border but I’ve always wanted to spend time in California and I don’t have to worry about sick days or even LTD if necessary.
I’ve even gained a bunch of weight lately so I don’t have to worry about running out of body fuel.
I’m well positioned to tackle this. I’m seeing my nurse next week to get a referral to CT scan and ultrasound of neck. We have a CT scan in my city.
Part of what freaked me out was reading this story when I was looking for a surgeon in BC. I’m pretty good at taking on the system and having some wins, I think I can make a case for the BC gov. to pay for my surgery, I’m pretty tenacious.
I keep reading that we should delay surgery as long as possible? That does not make sense to me. If that is the answer then I want surgery asap.
It is a relief to know what has been affecting my health and causing so much pain and discomfort. This sort of thing certainly affects the mental health as well.
The mind over matter was sort of a joke, but was my original plan sort of. I’ve done some work with a Qigong Medical Master and she was so concerned that I’m missing my gall bladder. I would not have that surgery today if I could possibly avoid it, but I think this is different. Surgery is not over prescribed for this condition.
Canada’s health care system is not fantastic, the government only recently recognized Lyme disease and still people are selling their homes to pay for treatment in the US. I have a friend in Toronto who has spent a small fortune on his own treatments.
I’m just scared is all. I feel like crying a lot and I have been.
I’m going to watch the Netflix Heal again tonight because there are some great ideas in there for moving forward.
From my googling it seems the alternative to surgery is pain meds and anti-depressants. I so disagree with that method. I can’t even take any more prescription NSAIDs or I break into a rash of tiny blisters on my core, which my doctor insisted was secondary syphilis and sent me to community health for a test (mandatory). Trauma upon trauma dealing with conventional medicine.
There are services available in my community for assistance at home, grocery delivery, I get my cannabis meds by mail…
It is truly amazing how much information is available about ES considering it is rare.
My symptoms have gotten worse very rapidly. They probably started about 26 months ago when I would find myself grimacing without my awareness.
I sleep propped up because sometimes I feel panicky because I can’t swallow and need to get upright immediately.
At that point it takes 3 or 4 tries before I can swallow and I need to be leaning forward so I don’t choke.
The reflex just won’t work.
My friend told me to start a pain diary and I will begin recording things today.
I have my first appointment with a new psychologist next week. My presenting problem is some trauma that took place about a year ago and the resulting trauma from some not very good counselors and lack of resources.
Again, thank you so much for sharing your story and your resources. Your support is so appreciated.
There are far worse diagnosis that someone will get getting today.
A woman is like a tea bag - you can’t tell how strong she is until you put her in hot water.