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Claire

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Sat, Oct 26 11:45pm · Symptoms Similar to Eagles Syndrome, Negative CT in Ear, Nose & Throat (ENT)

Follow up: On doing some reading, it seems like maybe I need to look in to Hyoid bone Syndrome. It is essentially bursitis of your hyoid. I have chronic bursitis in my achilles, heel, wrist, thumbs, and hips. So this would not surprise me. And the pain description is very, very similar to eagles syndrome in many ways and fits my pain even better. Definitely promising!!

Info : The Hyoid Bone Syndrome https://journals.sagepub.com/doi/abs/10.1177/019459988209000211?journalCode=otoj

Sat, Oct 26 11:04pm · Symptoms Similar to Eagles Syndrome, Negative CT in Ear, Nose & Throat (ENT)

So, the dilemma is that I have had a completely normal CT of head and neck orderd by my ENT cranial specialist (minus serious sinus issues which he fixed surgically in July), and a head MRV and MRA that he has not yet seen but that the radiologist said were normal. However, for the last about 2 years I have had severe and constant daily symptoms of what seems to be, to a T other than the lack of imaging results, Eagles Syndrome. It began shortly after I had my Tonsillectomy in 2017. It was necessary, I had strep over 20 times, but I have recently been made aware that a form of Eagles Syndrome can develop after tonsillectomy that is different than the kind common in EDS patients where the styloid process itself elongates. I am wondering if this is possibly not as visible on CT, or doesn't cause the same jugular stenosis? If there is any possibility with negative imaging it could still explain my problem, or if there is another disorder with symptoms similar to Eagles Syndrome that might?

Essentially, I have daily, near constant pain where my neck meets my jaw on the left side, about an inch and a half below my ear. It is just in front and below where my jaw's corner is. There is a small, enlarged area/lump there that is not on the right side, that has been there well over a year or more. My craniosacral physical therapist, who is very knowledgeable about hypermobility and my symptoms, said that every time she works on my neck where it hurts, my styloid feels inflamed and displaced, and my hyoid is often screwed up as well. I had a second well regarded therapist second this recently as well. The pain radiates up towards my ear, thought not terribly, and every once in a while radiates down almost tingly to my collarbone, nerve pain like. Ice is somewhat helpful but quite frankly nothing really helps it. Massage helps some of the tension around it but not the pain itself. So far nothing anyone has done has helped. It is worse with turning my head to that side. It sometimes hurts to swallow but not most often.

I have ehlers danlos syndrome. I was reading that the type of Eagles Syndrome that can occur after tonsillectomy is caused by abnormal healing. Medscape says that "After tonsillectomy some people develop calcium deposits on the stylohyoid ligament, which attaches to the styloid process. Most people do not develop symptoms, but some may experience pain and other unusual sensations." I scar atrophically and severely from very light injury. I am wondering if this could explain my pain?? Do any of you have experience with this and does my pain sound similar?

Truly this is one of the most persistent pains I have and it is all day every day. It is so tiring and that entire half of my neck feels sore and screwed up as a result of how I hold my neck due to the pain. Thank you all in advance for any advice you have.

Sat, Oct 26 10:43pm · What can cause ANA titre of 1:2560? in Autoimmune Diseases

Hi everyone. I wanted to come back and update you all since you were so kind and helpful before. I have seen a couple different rheumatologists and rare disease specialists. I haven't made it to mayo yet, the trip expensive is a bit big atm unfortunately. That said: two of my doctors have two different theories; fortunately the treatment is the same! My rare disease specialist believes I have seronegative Antiphospholipid Syndrome, due to my frequent livedo reticularis and other APS indicative symptoms. My rheumatologist believes I have seronegative Sjogrens Syndrome and some kind of seronegative MCTD. Either way, I have been treated with 200mg then 300mg Plaquenil for the last 5 months or so. Within weeks my bursitis and tendonitis was half of what it was, and my joint pain was significantly reduced. Now, several months out, I have about half the joint pain I had before, and only very mild tendonitis and bursitis, though it persists in my ankles, shoulders, hips, and wrists. I am going to be getting a central line soon so that I can receive more regular infusions for my POTS, which makes a huge difference in my wellbeing, and I recently had sinus surgery which has helped my breathing and infections a ton! They also diagnosed me with Common Variable Immunodeficiency as my IgG was very low, which explains the frequent infections. I definitely still struggle with a variety of things, neck and right upper quadrant pain have been the biggest issues for the last year or so. I may need hip reconstruction shortly as my right hip, we've found on MRI, has some structural abnormalities, tendonitis and bursitis, a tear in my labrum, and a tear in my gluteus maximus. But overall I am doing much better and am very fortunate to have found physicians who treat my symptoms, not my bloodwork, and listen to my concerns. Thank you all again!

Sat, Oct 26 10:35pm · Eagle's Syndrome in Ear, Nose & Throat (ENT)

Hi – I realize this comment chain is very old, but. Dr. Edward Hepworth at Sinus Solutions at Immunoe, in Denver, CO, diagnoses and treats Eagles Syndrome. He is an ENT, and performs CSF leak and styloid surgeries, frequently with the help of a neurosurgeon. He also treats CSF leaks and IIH/Pseudotumor Cerebri. He specializes in EDS patients, like myself, and our various cranial and ENT issues. He does not believe I have Eagles Syndrome, though I have all the symptoms, because my CT is clear. I'm still in a pickle. The left side of my neck has every single Eagle's Syndrome symptom and it feels to a T like it. I swear if they open up my neck they'd find it! But according to imaging, nothing is amiss. Alas.

Sun, Feb 24 1:29pm · What can cause ANA titre of 1:2560? in Autoimmune Diseases

@bluebird6156 The only test for sjorgens I have had is two different blood panels, both negative. They tried to do that thing where they stick the paper in your eye but my eye burned too badly – I don't remember what the doctor exactly said but she said the test wouldn't be usable and took it out. I will definitely ask if there are other tests we can do for RA or Sjogrens like the lip biopsy – thank you so much! One of my worries is just that my doctors are struggling to find anything that could explain such varied involvement in my brain, liver, joints, etc.

@jenniferhunter Thank you for the book! I will check it out – I like reading!

@lioness Thank you for your kind thoughts! It has been very hard but I am determined to figure it out – I just get a head start 🙂

Sun, Feb 24 1:13pm · What can cause ANA titre of 1:2560? in Autoimmune Diseases

Thank you @johnbishop for linking me here! And thank you for the ANA links. It is always good to keep in mind the fallibility of blood tests – If it were just my ANA I would not be concerned but I have had systemic autoimmune symptoms and the elevated ANA reliably for 2 years now so I am just concerned, understandably.

@becsbuddy Thank you so much for the suggestion and your kind words. I am trying to plan a mayo clinic trip in the summer after I (hopefully) graduate – I'm 3.5 years into my neuropsychology program and am really just trying to make it to the end. I have gone to University of Colorado Anschutz Hospital for 3 years now, and they basically said they couldn't help me anymore once I didn't have MS, and their rheumatology department refused to see me without something more "conclusive" (than an ANA, optic neuritis, and lesions? hm). I have been seeing Dr. Jill Schofield, who is an autoimmune and rare disease specialist in Denver. She is the one who has been able to help me even begin to figure out a lot of this, but obviously it's a pretty big puzzle for any one person to figure out! I will let my family know (they have been encouraging me to consider mayo) that people seem to get good answers, they are just worried about the cost partly.

Sun, Feb 24 1:04pm · What can cause ANA titre of 1:2560? in Autoimmune Diseases

sugarboo Thank you for your help! I have been working on my diet and controlling Candida for a while and it has been very helpful!I will definitely try the calcium citrate, thank you.

Sun, Feb 24 11:16am · What can cause ANA titre of 1:2560? in Autoimmune Diseases

Hi Everyone,

I'm not sure if anyone will have any advice, but I've been dealing with a mysterious (seemingly) auto-immune disease that none of the specialist I've seen have been able to figure out. I am 21 years old, female, college student. I have diagnosed Ehlers Danlos Syndrome (a genetic connective tissue disorder) as well as Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. It took me years and lots of specialists to figure those pieces out, but the auto-immune stuff is just a puzzle. I have been chronically ill much of my life but until the last few years, my test results were always normal. Now they are abnormal and even more puzzling.

Two years ago I had an MRI for eye pain and they found optic neuritis in my right eye and supratentorial lesions that are predominantly located in the deep and juxtacortical white matter. So of course they referred me to an multiple sclerosis clinic, but two spinal taps later – and two years of unchanging MRI's – and I do not have MS. However my ANA at that time was 1:160, and I'd been having chronic fatigue, occasionally red swollen joints, rashes, and other auto-immune symptoms. So they referred me to rheumatology. One doctor knows that antiphospholipid syndrome can cause MS-like symptoms – but my APS panels are all normal. So, two years later and I've had a slew of confusing test results and no more answers.

The reasons I think there is *something* autoimmune going on, although I have no idea what:

*My ANA has been 1:320 for about a year now, was 1:160 for at least a year prior. My auto-immune specialist tested me for every thing she could think of – antiphospholipid antibodies, RA, lupus, sjorgens, all the basics and then some – and every single result I have had has been reassuringly normal. Which wouldn't be a problem if I FELT normal.
*Roughly 6 months ago I started having pain in my right side, right where my liver is. It gets worse after eating but not massively, so my doctor ran some liver and gallbladder blood panels and also an upper right quadrant ultrasound. Ultrasound was normal, but my ALT and ALS were both elevated mildly (low 100's). That has persisted since. The pain has very gradually worsened but is pretty much just constant day in and day out. Waiting on a more comprehensive liver panel now. It is severe enough now that it really bothers me all day and makes being comfortable in any position almost impossible. It's on the front upper right of my abdomen and wraps around to my ribs on the side, kind of right under my right breast.
*Starting 1 year ago I began having problems with my carpi radialis tendons, bilaterally. It has slowly increased – from starting with on and off pain mostly with use. Now, as I have my friend help me type this, I have been unable to use my wrists or hands at all for about 2 months. I can't go to work. It's like all the tendons in my wrists and fingers (especially thumbs) and then more recently my achilles are just constantly inflammed. Yet other than the ANA and liver function tests, my blood and x-rays are unremarkable. My tendons keep deteriorating and new ones are becoming problematic despite my extensive bracing, rest, ice, and physical therapy 🙁 I also have had 3x of bursitis in my shoulders with no known cause. Two of them would not go down without steroid injections, even after months of rest.
*off and on low white count. It's often as low as 3.5-4, but generally sits around 5ish. Not dangerously low, sure, but odd.
*I have a fever, randomly (seemingly) of right around 100.0. Often like 99.8-99.9. My resting temp is 97.8, my doctor agrees my resting temp is generally lower, so we both agree this is a fever. I will have it several days a week for weeks and then be fine for long periods of time.
*The ONLY Time I have improved in the last year overall (rather than slowly deteriorated) was over this weekend when they put me on IV steroids at the ER and then sent me home with a steroid taper of dexamethasone. My joints have not hurt this little in months, and even though my tendons are still awful they are USABLE in ways I haven't had in 3 months. The redness in my joints is gone. The liver pain is unchanged – but they ran my ALS and ALT, and they were normal for the first time in a YEAR after steroids! My tendons in my ankles are worse but I also had PT yesterday so I don't know.
*Random auto-immune symptoms: sores I have gotten in my mouth for years, random rashes, very sensitive to light (to the point that I can't open my eyes outside sometimes and have had to take ubers to class because I am too blind to drive) with no seeming explanation.
*Frequent infections – you name it. Had to have tonsils out for tonsillitis and strep constantly that wouldn't go away with antibiotics. Ear infections. Infected cuts despite my impeccable care for them. CONSTANT bronchitis when I was younger, colds, you name it really. I know this isn't, obviously, diagnostic but along with my low white count it's meaningful to me.

But as I said, all my test results for pretty much every antibody possible, except my ANA, have been negative. Still awaiting the auto-immune hepatitis and a few other rare ones. Can anyone think of anything we might have missed? I'm at a loss as to what could explain the optic neuritis, liver inflammation, etc. All of this seems very systemic, and it has been very painful and disabling. My doctor is a specialist in antiphospholipid syndrome and has really tried to look deeply too but is also at a loss. At this point, it's not like I want to have an auto-immune disease, but I think it's just weird that my body seems to act so much like it has one, and reacts to steroids/medication like it does. Why won't my doctors treat me as if I have one? Is it really impossible for me to have an autoimmune disease with negative test results except ANA? Should I ask my doctors to do an MRI of my tendons instead , or something like that? I've had these pains 24 hours a day in my wrists and abdomen and I'm just so tired of it. 2 years ago I was an independent, mobile college student. Now I struggle to walk with a cane and multiple braces and have multiple concerning, unexplained results. Thanks so much to anyone reading, I know this was long, and thanks for any help you can offer.

Claire