New member with lots of questions

General
21

Hi Jeanette (and everyone else who would like some great insight into this lovely pain disorder)...

I am very new to this message board, in fact, I think this is the first time I have posted anything.I wanted to reply to your message with some insight I have about this whole syndrome.My insight is very basic and just comes from my own common sense, trying to simplify things.I have realized in life that sometimes things are just not all that complicated, yet everyone around us seems to somehow complicate things!! As an example, I have been living in pain with my neck, jaw, face, throat and shoulder since I was about 20 yrs old. I am now 46. I have been told, since the age of 14, that "I have TMJ disorder".At age 14, I had no jaw pain or headaches.It was my dentist who noticed that my jaw was not opening or closing properly..or the joint was not lined up properly.He asked me if I was having any headaches or jaw pain.Since I wasn't, I never really thought about it again, and my teeth were perfectly straight and I was never sick.(I did, however, suffer from 2 yrs of Anorexia from age 11 til age 14.I was hospitalized for this, and got well..or at least looked well.On a side note, for those of you who think Anorexia or other eating disorders are about weight loss or weight gain, that is completely the OPPOSITE of what they are about.The weight loss and weight gain, and obsession with food,(whether to not eat, or binge, over exercise or purge with vomiting) is only the outward symptom of what an eating disorder is about. Eating disorders are anxiety disorders and they have to do with a fear of loss of control over things in one's life.Ok..so, why have I brought up eating disorders on this forum? Because, as I said, eating disorders are anxiety disorders.What do people do when they are living with anxiety? They generally have problems with sleep..they usually cannot sleep..or they become so depressed that they want to sleep all the time.What else happens during sleep when a person is living with anxiety or depression? They grind their teeth.What happens when a person grinds their teeth when they sleep? The teeth wear down, the jaw tenses up and spasms..and the facial muscles tighten, the neck muscles tighten, the jaw tightens, the head tightens..and so on and so on.Years and years of this muscle and joint tightening and teeth getting worn down from teeth grinding while sleeping causes PAIN...PAIN in the jaw, pain in the neck, pain in the throat,pain in the head..and ALL OF IT IS A ROYAL PAIN IN THE ASSSSSS!!!!

Next subject...in my case, I was in 2 car accidents..neither of which were my fault..and I was hit from behind in both incidences.At age 16,I was sitting in the back seat of my mom's car, doing homework on my way home from my evening ballet class,and we were hit by a drunk driver while sitting at a stop light.I hit the top of my head.Hitting the top of my head most likely caused compression in my neck, definitely affecting my jaw, too.of course, at age 16, does one really focus on headaches and jaw pain when they are so busy with school, ballet classes, friends, boys and a social life? I was beginning to feel pain, but, at that time, my mom most likely just told me to "rest more".A few years later, at age 20, I had all 4 wisdom teeth removed...3 of which were completely impacted and really did NOT need to come out, but of course, what oral surgeon would take out ONE wisdom tooth when he/she has the opportunity to make quadruple the money by convincing one that all 4 need to come out at once to "avoid later problems"...(BULLSH--T BTW!!! DONT EVER HAVE YOURSELF OR YOUR CHILDREN HAVE ALL 4 WISDOM TEETH EXTRACTED AT THE SAME TIME UNLESS U HAVE A SITUATION OF 4 INFECTED WISDOM TEETH!) Well. this lovely wisdom TEETH extraction, where I was under general anesthesia, caused me INCREDIBLE ONGOING PAIN IN MY LEFT SUBMANDIBULAR AREA, JAW AND BACK OF MY HEAD AND NECK..and this, my friends, I believe was the MAIN CAUSE OF MY EAGLE/ERNEST SYNDROME AND HYOID BONE SYNDROME.(Btw..all 3 of these have NOT been formally diagnosed by ANY DR bc they simply don't study these disorders...which BLOWS MY MIND BC OUR ANATOMY HAS NOT CHANGED IN HUNREDS OF YEARS! We have ALWAYS had a styloid bone, a Hyoid bone and every other part of our jaw bone anatomy..so, if this is the case..WHY ARE DRS UNABLE TO DIAGNOSE AND TREAT EAGLE SYNDROME, ERNEST SYNDROME AND HYOID BONE SYNDROME????? ARE THEY LAZY? Are they too focused on other crap..so much so that they MISS the obvious?? I mean, Drs diagnose knee, hip, shoulder, neck, back and foot problems.,..so why not jaw problems? we have many bones in our feet and hands... and we have many bones in our jaw, too..so WHAT THE HELL IS SO DAMN DIFFICULT when it comes to getting a proper diagnoses of a SPECIFIC JAW PROBLEM??? Btw..my second car accident, where I was also hit from behind, caused me whiplash. So..2 scenarios where I hit my head and one scenario where I am put under anesthesia and my jaw is CRANKED OPEN AND YANKED ON TO GET DEEPLY IMPACTED WISDOM TEETH RIPPED OUT OF MY JAW BONE.(Btw..I had been diagnosed with Fibromyalgia at the age of 17, due to chronic trigger point pain and stiffness all over my body..,but I think, all this time, I have had Myofascial Pain disorder and not necessarily Fibromyalgia....and Myofascial pain disorder begins with postural problems and can be set off by trauma and injuries!!). I know where and when my jaw and throat problem began and I have NOT yet been diagnosed or treated and bc of my obvious pain, I think every Dr I have been to is a complete stupid and LAZY IDIOT by NOT CORRECTLY DIAGNOSING ME WITH ANYTHING.

So..Think back everyone..think back to when your pain began and you will sort out how it started for you.To manage your pain, keep your stress levels down...or learn to handle stress in POSITIVE WAYS..something I help people to do with hypnosis. Lastly...MAKE SURE YOU LISTEN TO AN AMAZING DR AND HOW ALL DISEASE BEGINS AND THE POWER OF NUTRITION TO REVERSE ALL DISEASE AND AGING...Go to www.DeadDoctorsDontLie.com. This info can help bc proper nutrition brings DOWN inflammation and pain.However, if you have an anatomical abnormality causing you pain, you need hands on therapy...massage, acupuncture, Myofascial release, and possibly surgery.Ok..that is it for now..too much typing for one night...it activates my pain...which reminds me...poor posture CAUSES THE JAW AND NECK PAIN TO COMPLETELY FLARE UP!

22

Hi Jeanette,

I found this article on my computer at work - I apparently copied it from somewhere at some point, but I don't remember if it was from the forum or not. Anyway, I thought it would be interesting to you because it discusses several theories about the "etiopathogenesis" of eagles syndrome.

133-SilpiranjanMishra18711876.pdf (1.09 MB)
23

I am also post menopausal, so I can't contribute to that theory. My symptoms started just about a year ago with a sore throat that wouldn't go away. One thing that I noticed while reading through this post that I hadn't connected (and I'm not sure there is any connection at all) I also developed ganglion cysts in my hands at the same time the ES symptoms started. The cysts are small and have resolved themselves, but it seems as soon as one goes away another forms. Could it be connected to ES? I also, as many others have said, had a severe whiplash injury in a rollover car accident 30 years ago. Also in common with others who have posted, my top wisdom teeth were removed (I don't have wisdom teeth on the bottom) in 2012, 18 months before I noticed ES symptoms.

24

I believe there might be a connection between your ganglion cysts and ES...ganglion cysts indicate destruction of collagen, due to repeated stress/overuse of the joint or to impaired collagen formation. I notice a trend with ES and many other joint /tendon/ligament issues. Healthy collagen formation can be encouraged by good dietary intake of glucosaminoglycans (chondroitin, glucosamine), proline, glycine, etc...all perfectly balanced in bone broth, BTW. I've been cooking whole chickens or turkey about one a week, throwing all the scraps and bones into the stockpot and simmering it all for a couple of days. I drink the broth every day and/or use it as the base for soup. I had started feeling very creaky, stiff, and OLD a couple of years ago, so I jumped on the optimal nutrition bandwagon. I am determined to stay strong and flexible so I can finish school and get cracking on my late-bloomer career, lol!

suzymc44 said:

I am also post menopausal, so I can't contribute to that theory. My symptoms started just about a year ago with a sore throat that wouldn't go away. One thing that I noticed while reading through this post that I hadn't connected (and I'm not sure there is any connection at all) I also developed ganglion cysts in my hands at the same time the ES symptoms started. The cysts are small and have resolved themselves, but it seems as soon as one goes away another forms. Could it be connected to ES? I also, as many others have said, had a severe whiplash injury in a rollover car accident 30 years ago. Also in common with others who have posted, my top wisdom teeth were removed (I don't have wisdom teeth on the bottom) in 2012, 18 months before I noticed ES symptoms.

25

Thank you so much! I just finished skimming this article, then decided it was worth printing for future reference. :)

heidemt said:

Hi Jeanette,

I found this article on my computer at work - I apparently copied it from somewhere at some point, but I don't remember if it was from the forum or not. Anyway, I thought it would be interesting to you because it discusses several theories about the "etiopathogenesis" of eagles syndrome.

26

Wow, you sure have been through a lot! :( Thanks for posting this reply, it has definitely given me more to think about. I hope you find an Eagle-literate doctor who can help you SOON! I have seen a few links to a "good doctor" list here on the forum. Best wishes to you!

p.s. I took a look at that link you shared, but couldn't find any articles, just product sales. I did peek at the ingredients lists on some of the supplements, and I wouldn't be able or willing to take them because I must use only the bio-available (methylated/coenzyme) forms of the vitamin B complex, must avoid folic acid (FOLATE yes, folic acid, NO!NO!NO! BAD!!!), and refuse to take isolated ascorbic acid, which is only a minute part of the beautiful complex we call vitamin C... but thank you for sharing :)

motivate4change said:

Hi Jeanette (and everyone else who would like some great insight into this lovely pain disorder)...

I am very new to this message board, in fact, I think this is the first time I have posted anything.I wanted to reply to your message with some insight I have about this whole syndrome.My insight is very basic and just comes from my own common sense, trying to simplify things.I have realized in life that sometimes things are just not all that complicated, yet everyone around us seems to somehow complicate things!! As an example, I have been living in pain with my neck, jaw, face, throat and shoulder since I was about 20 yrs old. I am now 46. I have been told, since the age of 14, that "I have TMJ disorder".At age 14, I had no jaw pain or headaches.It was my dentist who noticed that my jaw was not opening or closing properly..or the joint was not lined up properly.He asked me if I was having any headaches or jaw pain.Since I wasn't, I never really thought about it again, and my teeth were perfectly straight and I was never sick.(I did, however, suffer from 2 yrs of Anorexia from age 11 til age 14.I was hospitalized for this, and got well..or at least looked well.On a side note, for those of you who think Anorexia or other eating disorders are about weight loss or weight gain, that is completely the OPPOSITE of what they are about.The weight loss and weight gain, and obsession with food,(whether to not eat, or binge, over exercise or purge with vomiting) is only the outward symptom of what an eating disorder is about. Eating disorders are anxiety disorders and they have to do with a fear of loss of control over things in one's life.Ok..so, why have I brought up eating disorders on this forum? Because, as I said, eating disorders are anxiety disorders.What do people do when they are living with anxiety? They generally have problems with sleep..they usually cannot sleep..or they become so depressed that they want to sleep all the time.What else happens during sleep when a person is living with anxiety or depression? They grind their teeth.What happens when a person grinds their teeth when they sleep? The teeth wear down, the jaw tenses up and spasms..and the facial muscles tighten, the neck muscles tighten, the jaw tightens, the head tightens..and so on and so on.Years and years of this muscle and joint tightening and teeth getting worn down from teeth grinding while sleeping causes PAIN...PAIN in the jaw, pain in the neck, pain in the throat,pain in the head..and ALL OF IT IS A ROYAL PAIN IN THE ASSSSSS!!!!

Next subject...in my case, I was in 2 car accidents..neither of which were my fault..and I was hit from behind in both incidences.At age 16,I was sitting in the back seat of my mom's car, doing homework on my way home from my evening ballet class,and we were hit by a drunk driver while sitting at a stop light.I hit the top of my head.Hitting the top of my head most likely caused compression in my neck, definitely affecting my jaw, too.of course, at age 16, does one really focus on headaches and jaw pain when they are so busy with school, ballet classes, friends, boys and a social life? I was beginning to feel pain, but, at that time, my mom most likely just told me to "rest more".A few years later, at age 20, I had all 4 wisdom teeth removed...3 of which were completely impacted and really did NOT need to come out, but of course, what oral surgeon would take out ONE wisdom tooth when he/she has the opportunity to make quadruple the money by convincing one that all 4 need to come out at once to "avoid later problems"...(BULLSH--T BTW!!! DONT EVER HAVE YOURSELF OR YOUR CHILDREN HAVE ALL 4 WISDOM TEETH EXTRACTED AT THE SAME TIME UNLESS U HAVE A SITUATION OF 4 INFECTED WISDOM TEETH!) Well. this lovely wisdom TEETH extraction, where I was under general anesthesia, caused me INCREDIBLE ONGOING PAIN IN MY LEFT SUBMANDIBULAR AREA, JAW AND BACK OF MY HEAD AND NECK..and this, my friends, I believe was the MAIN CAUSE OF MY EAGLE/ERNEST SYNDROME AND HYOID BONE SYNDROME.(Btw..all 3 of these have NOT been formally diagnosed by ANY DR bc they simply don't study these disorders...which BLOWS MY MIND BC OUR ANATOMY HAS NOT CHANGED IN HUNREDS OF YEARS! We have ALWAYS had a styloid bone, a Hyoid bone and every other part of our jaw bone anatomy..so, if this is the case..WHY ARE DRS UNABLE TO DIAGNOSE AND TREAT EAGLE SYNDROME, ERNEST SYNDROME AND HYOID BONE SYNDROME????? ARE THEY LAZY? Are they too focused on other crap..so much so that they MISS the obvious?? I mean, Drs diagnose knee, hip, shoulder, neck, back and foot problems.,..so why not jaw problems? we have many bones in our feet and hands... and we have many bones in our jaw, too..so WHAT THE HELL IS SO DAMN DIFFICULT when it comes to getting a proper diagnoses of a SPECIFIC JAW PROBLEM??? Btw..my second car accident, where I was also hit from behind, caused me whiplash. So..2 scenarios where I hit my head and one scenario where I am put under anesthesia and my jaw is CRANKED OPEN AND YANKED ON TO GET DEEPLY IMPACTED WISDOM TEETH RIPPED OUT OF MY JAW BONE.(Btw..I had been diagnosed with Fibromyalgia at the age of 17, due to chronic trigger point pain and stiffness all over my body..,but I think, all this time, I have had Myofascial Pain disorder and not necessarily Fibromyalgia....and Myofascial pain disorder begins with postural problems and can be set off by trauma and injuries!!). I know where and when my jaw and throat problem began and I have NOT yet been diagnosed or treated and bc of my obvious pain, I think every Dr I have been to is a complete stupid and LAZY IDIOT by NOT CORRECTLY DIAGNOSING ME WITH ANYTHING.

So..Think back everyone..think back to when your pain began and you will sort out how it started for you.To manage your pain, keep your stress levels down...or learn to handle stress in POSITIVE WAYS..something I help people to do with hypnosis. Lastly...MAKE SURE YOU LISTEN TO AN AMAZING DR AND HOW ALL DISEASE BEGINS AND THE POWER OF NUTRITION TO REVERSE ALL DISEASE AND AGING...Go to www.DeadDoctorsDontLie.com. This info can help bc proper nutrition brings DOWN inflammation and pain.However, if you have an anatomical abnormality causing you pain, you need hands on therapy...massage, acupuncture, Myofascial release, and possibly surgery.Ok..that is it for now..too much typing for one night...it activates my pain...which reminds me...poor posture CAUSES THE JAW AND NECK PAIN TO COMPLETELY FLARE UP!

27

Shayna,

Your symptoms of excruciating stabbing pain everytime you ate something sound a lot like what I had post-resection of my right styloid process last year (I had vascular ES). Everytime I ate something after the surgery for about a few weeks/months, I would feel a jolt/impulse in my jaw... and it would be worse when I would chew on the right side. As I kept eating the pain would dissipate but if I ate something else 30 minutes to an hour later, I would feel it again. I think it was First Bite Syndrome (check it out, here is a link to get you started - http://www.sciencedirect.com/science/article/pii/S1879729613000021). It's been around 8 months since the surgery and I no longer have those symptoms.


Shayna said:

Appreciate your professional interest in ES and hope your efforts can find relief for your sister as well as those of us with the diagnosis. Like a former responder, I had tonsillectomy at age 5. I am now 65 and had my first joint replacement (left hip) at the age of 48. Diagnosis was osteoarthritis. Since then I have had the other hip replaced, both shoulders and left knee. I have been diagnosed with BPV (benign positional vertigo). Literature on ES suggests vertigo is a symptom. Have also suffered from migraine headaches since age 7. Only in the past couple years have the incidences and degree of severity decreased. My ES symptoms are strange... I have an excruciating stabbing pain on the left side of my head by the inner ear every time I introduce something into my mouth. It could be water, toothpaste or food. The severe pain lasts for about 10 seconds, then it goes away and I can resume my activity, drinking, eating or brushing my teeth without any further discomfort..... Until the next oral activity begins, which could be in about 15 mins or 2 hours. The pain is localized to just the left side, jaw/inner ear area. ES diagnosis was from ENT in October 2014. Hope my history has added to your research.
28

A number of us have experienced First Bite Syndrome. It gradually fades and most people lose it entirely by about 6 months after surgery. I still have it almost 2 years after my surgery, but it's not that bad anymore and it's something I can easily live with.

29

Jules, so sorry I didn't see this reply earlier! I want to thank you for bringing the DISH connection to my attention, this is really great info! I'm going to find that conversation and do more digging...I'm waiting to hear back from a research team in Turkey that was doing some interesting studies on pathological/ectopic calcification related to Eagle's. The abstract concluded with a proposal for further study, and that was in 2003, so I'm hoping they have learned more...

Jules said:

Hi! It's great that you're helping your sister and looking into this. As well as the already researched link to tonsillectomies, and the thyroid/ calcium link others have mentioned, there was a discussion previously about 'Diffuse idiopathic skeletal hyperostosis (DISH)', which is calcification or a bony hardening of ligaments in areas where they attach to your spine. As several people have bone spurs like you mentioned, on here it was discussed as a possible cause for elongation/ calcification. There has also been a recent discussion about this being hereditary. Also in previous discussions we've talked about an injury- head or neck- perhaps being to blame with then maybe the body's repair of that going overboard and causing calcification. I had quite a bad whiplash injury 20 years ago and have had neck trouble since then, others have had the same....

Good luck with your research, and hope that your sister gets treated well.

30

That's good; it's great that you're doing so much research for us! I've looked at some stuff, but it gets quite hard work when you're not that medically trained! It was David actually who brought the DISH up as a possibility a while ago.

Good luck!

31

Wow....we really do need to have a survey done! Once we all pipe in, then common things appear. Some things talked about were familiar to me, but I didn't think relevant.

I see a doctor for my M.S. and asked him some questions because I inject interferon beta 1a. I thought maybe the use of the drug after 12 years was causing some of my issues. But I can see that it is not something we here have in common.

I'm going to add that I really don't know when my ES started since I blamed so much on M.S. It was the persistent ear ache that drove me to doc after doc until an ENT found the ES.

I too had severe whip lash in a horrible car accident in 1964 at age 6. I also have gone through horrible heel pain that I was told was a flattening of the fat pad. Hmmmm. My left elbow hurts when I put it on a table (sharp pain). My knees have the "bump" on the shin bone just below the knee. Now I've got ES bilaterally and ganglia appearing on bones on my palms and fingers.

32

I’ve been sidetracked studying for an anatomy exam (aced it, yay!), and caring for my 3 y.o. twin nephews, but I hope to get the survey up and running later this week. It is turning out to be quite comprehensive, because I want to know EVERYTHING, and every time I spend an hour on research I think up a dozen more questions, lol!

Sorry to hear about your MS. Are you taking a coenzyme B complex (methylcobalamin, L-methylfolate, B6 as P5P, etc) and high EPA/DHA omega 3? Very neuro-protective…

33

Hi JJ,

Here's my list of physical issues for your research:

Tonsillectomy (1960)

Skull fracture & concussion (1968)

TMJ (early 1970s)

Whiplash (1979)

Thryoid cysts (benign - first diagnosed in early 1990s)

Bilateral Eagle Syndrome (Diagnosed Fall 2014)

I began having swallowing/choking issues 2-3 years ago the cause of which remained a mystery even after an endoscopy. I now know it was because I had elongated styloids that were interfering in my throat. I presume they weren't pronounced enough for the gastroenterologist to notice them at that time (not that he would have been looking for them, of course).

Hope this is helpful as you compile your data.

:)

34

Hi Charmion,

I have noticed something in your post ... I don't have any actual medical knowledge, but it bothers me that you have been told by an ENT you don't have acid reflux. It's not an ENT's area as it's to do with your gut. Have you ever had an endoscopy so the appropriate doctor can look at your stomach? There can be serious complications if you have untreated acid reflux. I don't want to be a scaremonger in any way, only to make you aware ... my Dad died from Barrett's disease, which is (to my limited knowledge!) caused by untreated acid reflux.

Just to be on the safe side, if you haven't had an endoscopy (camera down the throat), go have one :o)

35

Wow, Isaiah, you just can't seem to get a break, can you?! My skull aches just reading your history...

Trauma (tonsillectomy, whiplash, etc) is definitely a common denominator. I'm a little excited because I found an obscure article in a medical journal last night (just woke up, can't remember which journal) that discussed the promising use of alpha-lipoic acid (ALA) in reversing ectopic calcification of soft tissues. The study referred to aortic and cardiac calcification caused by viral infection, but I'm eager to see how it might help is ES. ALA is a potent antioxidant, and it seems to clear up the debris of inflammation. Inflammation seems to be the instigating factor that begins the cascade...

I am always hesitant to use (or recommend) any supplement before I know everything about it, including how to support the body's own production...(I wasn't a very good supplements retail associate, but my customers would spend hours with me, lol!) You can support the body's production of lipoic acid with sulphur-containing foods (broccoli, onion...lots) IF the metabolic pathway is functioning. Another clue, perhaps...do folks with ES have that pathway intact? I want to learn more...

Isaiah 40:31 said:

Hi JJ,

Here's my list of physical issues for your research:

Tonsillectomy (1960)

Skull fracture & concussion (1968)

TMJ (early 1970s)

Whiplash (1979)

Thryoid cysts (benign - first diagnosed in early 1990s)

Bilateral Eagle Syndrome (Diagnosed Fall 2014)

I began having swallowing/choking issues 2-3 years ago the cause of which remained a mystery even after an endoscopy. I now know it was because I had elongated styloids that were interfering in my throat. I presume they weren't pronounced enough for the gastroenterologist to notice them at that time (not that he would have been looking for them, of course).

Hope this is helpful as you compile your data.

:)

36

p.s. Ivy, there was a study that looked at whether or not Interferon was causing bone mineral density loss/ectopic calcification in MS patients, because osteomalacia/-porosis is common in MS sufferers. The study concluded that Interferon was NOT the culprit. There was another study that DID show that one of the correlating factors was vitamin D deficiency.

Nude sunbathing, anyone? LOL! Seriously, though, if spring has sprung where you are, enjoying 20 minutes/day in the gentler morning sun without sunscreen, exposing arms, legs, face will get you your D...


JJ said:

I've been sidetracked studying for an anatomy exam (aced it, yay!), and caring for my 3 y.o. twin nephews, but I hope to get the survey up and running later this week. It is turning out to be quite comprehensive, because I want to know EVERYTHING, and every time I spend an hour on research I think up a dozen more questions, lol!

Sorry to hear about your MS. Are you taking a coenzyme B complex (methylcobalamin, L-methylfolate, B6 as P5P, etc) and high EPA/DHA omega 3? Very neuro-protective...
37

Interesting info, JJ. Thanks for sharing what you know. I actually eat a massive amount of veggies including many cruciferous & leafy varieties & onions & garlic. I'm not a vegetarian but veggies make up a large part of my diet. I am grain, legume & mostly dairy free. I take turmeric capsules & good quality fish oil to help w/ inflammation as well as trying to keep my body more on the alkaline side. I drink tons of water as well. I do take vitamin & mineral supplements. Like Charmion, I have a very active lifestyle so am in good physical condition for my age.

One addition to my list is that I'm a jaw clencher (not teeth grinder). I do wear a nightguard on my lower teeth when I sleep to prevent further teeth/gum destruction. I've often wondered if the clenching over years is more the cause of my TMJ & ES than anything else, but I guess everything my head/neck have been through could contribute.

I have had my right styloid shortened & am awaiting my second surgery in May to reduce the length of the left side. Hopefully that will alleviate the remaining symptoms I have from this curious ailment. In case you're interested in looking, I posted 4 of my CT scans on my personal page.

Happy researching. It seems your collection of symptoms & potential causes of ES grows daily thanks to this site!


JJ said:

Wow, Isaiah, you just can't seem to get a break, can you?! My skull aches just reading your history...

Trauma (tonsillectomy, whiplash, etc) is definitely a common denominator. I'm a little excited because I found an obscure article in a medical journal last night (just woke up, can't remember which journal) that discussed the promising use of alpha-lipoic acid (ALA) in reversing ectopic calcification of soft tissues. The study referred to aortic and cardiac calcification caused by viral infection, but I'm eager to see how it might help is ES. ALA is a potent antioxidant, and it seems to clear up the debris of inflammation. Inflammation seems to be the instigating factor that begins the cascade...

I am always hesitant to use (or recommend) any supplement before I know everything about it, including how to support the body's own production...(I wasn't a very good supplements retail associate, but my customers would spend hours with me, lol!) You can support the body's production of lipoic acid with sulphur-containing foods (broccoli, onion...lots) IF the metabolic pathway is functioning. Another clue, perhaps...do folks with ES have that pathway intact? I want to learn more...

Isaiah 40:31 said:

Hi JJ,

Here's my list of physical issues for your research:

Tonsillectomy (1960)

Skull fracture & concussion (1968)

TMJ (early 1970s)

Whiplash (1979)

Thryoid cysts (benign - first diagnosed in early 1990s)

Bilateral Eagle Syndrome (Diagnosed Fall 2014)

I began having swallowing/choking issues 2-3 years ago the cause of which remained a mystery even after an endoscopy. I now know it was because I had elongated styloids that were interfering in my throat. I presume they weren't pronounced enough for the gastroenterologist to notice them at that time (not that he would have been looking for them, of course).

Hope this is helpful as you compile your data.

:)

38

Hi Charmion,

I recently started reading a book that might interest you as far as your gut issues go: "Fiber Menace" by Konstantin Monastyrsky. It's available on Amazon in both paperback & Kindle versions. Mr. Monastyrski goes into great depth in discussing how our digestive systems work but keeps the text in layman's terms. So far, I've found it very informative & helpful as I've had gut issues for years myself. I believe there is much to be said for being able to heal ourselves through what we put (or don't put) in our bodies.

I hope you are able to find answers to the cause of your current pain. I will be praying for you in that regard.



Charmion Harris said:

JJ,

Thank you for your interest in ES and your sister's condition. I have been diagnosed with ES and have underwent surgery a couple of months ago. While the surgery did relieve some pain from my neck to my ear, it seems that the pain in my lower neck and back as intensified. I have been doing a lot of research to try to determine what is going on . . . as the doctor says not too worry, I just have bone spurs and stenosis of the spine--normal arthritis stuff. I am 46 and very active, eat a mostly vegetarian diet. Some of the activities I do are trail running, mountain biking, yoga, kayaking, etc. I also do frequent massages and chiropractor adjustments. By all accounts, I should not be having the pain that I am. My research leads me to believe that I must be having issues with calcium and/or magnesium absorption--even though my tests a couple of years ago were fine. I have done a complete study of the vitamins, minerals, protein, carbs and fats that my diet provides . . . according to the USDA I should be really healthy. Of interest in your research, I also have hypothyroidism, raynauds, gall bladder removed several years ago, and what I believe is ongoing IBS. I take supplements for IBS (colon health), and even though the ENT says I don't have acid reflux, have been taking Prilosec, Prevacid and Omneoproxyl for years because without it I can't function due to extreme stomach discomfort. I am not menstruating, since I had an ablasion a few years ago. Probably the only "at risk" thing I take or do is live in a cold environment (which seems to aggravate my pain), sit at a computer all day at work and chew Nicorette to keep from smoking. Recently I was in Central America for a month and the pain that was excrutiating when I flew down there left completely after 3 days. It returned after a few days back to the cold office. I am really worried at the level of pain that I'm feeling and concerned that the only thing my doctor seems to think is reasonable at this point is to send me to pain management. Granted, I want pain relief, but if there is an underlying issue that I should be correcting . . . masking the pain means I'll never get to the source of it.

39

I had been taking fish oil but stopped because the capsules are so darn big! But I will resume. I don't take a B complex but I could add that in. I took high doses of D3 at one time because my level was 3x too low. Since then I take 2,000 during the winter months every day. I just ordered a supplement that has calcium/magnesium/D3 and K in chewable wafers. My MS is very stable.

Vitamin D3 is the only shortage I had. But I did mention earlier about all the odd stuff with ganglia, knee bumps etc

JJ said:

I've been sidetracked studying for an anatomy exam (aced it, yay!), and caring for my 3 y.o. twin nephews, but I hope to get the survey up and running later this week. It is turning out to be quite comprehensive, because I want to know EVERYTHING, and every time I spend an hour on research I think up a dozen more questions, lol!

Sorry to hear about your MS. Are you taking a coenzyme B complex (methylcobalamin, L-methylfolate, B6 as P5P, etc) and high EPA/DHA omega 3? Very neuro-protective...