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Undiagnosed Odd Chronic Neck-Eye issue

Started by Niklasbiz on 12/03/2018 7:58am

Greetings,

I am super interested to know if someone else here are having something similar to my strange issue and/or what has worked for you. I will seriously leave a bounty out there for the one that can advice me a skilled physician that can help with this.

I am in my early thirties and otherwise very healthy except for a rotator cuff injury 5 years ago that still bothers me occasionally.
Two years ago I started having a stiff and painful neck combined with a debilitating fatigue days or weeks post exercise.
My neck issue has since become worse and no physical therapy seems to help but instead exarcebate the neck pain.
9 months ago I started having chronic eye strain with sharp pain behind the eyes and blurred vision at times, which is cumalatively worsened by indirect glare and strong contrast environments such as fluorescent lights inside malls, computer screens in dark, etc.

All tests done such as blood work, xray, MRI of cervical spine & brain, eye exams, all show normal (except for a slight lordosis reversal). I should mention that I stll have

Physical therapists and ostepopaths can confirm stiff shoulder and neck muscles only but as mentioned, no treatment seems to alleviate the symptoms.

Anyone even heard about something this strange? All traditional doctors are shaking their heads when they hear about this...

Cheers and may you all get healthier one day at a time.

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Forgot this part...

I should mention that I stll have a 20/20 vision. My vision only goes blurred out if I ignore the pain and keep spending time inside malls, in front of screens/smart phones, etc.

I also get strong occipital migraines every other day on top as a nice additional bonus, hehe.

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Hello...I’m very new to this and have come on here to find some sort of relief of my pains as well. Yours seems to be the most similar. I have major aching in my left side of neck. I’ve had many injuries to it but my x-rays and MRIs and they’ve come back normal. Went the radiating aching pain comes on there’s so much pressure behind my eyes and I feel at times I’m loosing oxygen to my brain and I’m going to faint. It’s a really scary feeling. What’s crazy is it comes and goes almost like flare ups but when it’s here the pain is sometimes so hard to explain to doctors. It’s so frustrating. Lately the new pain has been in my hands and feet. I’m hoping to figure out on this forum what possibly could be wrong and maybe some answers. I can’t even fly on a plane because the pressure builds up so bad in my neck and face I think I’m dying. And the pain is like sharp shooting in my face. It hurts so bad I’m terrified to get back on a plane because it’s happened the last 2 times. Please any advice

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Hello Nik,
Have any of your doctors mentioned Multiple Sclerosis?
I have severe back degeneration, stenosis, retrolisthesis, spinal cysts, ruptured discs, and broken vertebrae to name a few - and I also have MS. Oftentimes MS doesn’t show up on initial testing and leaves everyone scratching their heads.... but, shows up on subsequent testing - mri’s, spinal taps, etc.... the symptoms you mention align perfectly for a MS diagnosis - pain behind eyes, migraines, light sensitivity, extreme fatigue.... I have a neuro surgeon for my back issues and a neurologist specializing in MS for that disease. They work together, but still sometimes we can’t determine whether a certain problem is back or MS generated, and sometimes it’s both. I’d definitely seek out a MS specialist for a consult to either rule in or rule out that problem. There is A LOT that can be done with MS symptoms to ease your pain and problems. Feel free to message me if I can help any further.
Nat

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Hi Nat,

Thank you so much for replying.

I did only see 1 neurologist which immediately ruled out MS after looking at my plain head MRI. I was told that it would show if I had it so I moved on. I bought it because I am not the professional but it would not be the first time I would have been misdiagnosed.

Where can MS show up on the MRI? Head and cervical spine? How about full spine?

I could do another one I guess as I would like to avoid spinal tap as much as I can (less safe in my current country).

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Hi Nik,
MS can show up in the brain and cervical MRI, rarely in the thoracic, and not in the lumbar. It can also show up via spinal tap. A lot of times at initial onset it isn’t readily available to see on the MRIs. For example the optic nerve affected by a MS legion can be very hard if not impossible to see on a MRI, but can give you those exact vision problems. Often times a MS diagnosis doesn’t come until a person has had repeated and varying problems and then something shows up. You can read about diagnosis on the US National Multiple Sclerosis Website.
Good Luck in your search!
Nat

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I too have had strange effects because I injured my neck cleaning. I thought it would just go away on its on.

(I do have pre-existing spine injury. Broke my T10 and fully compressed spine in 1996. A lot of Titanium Hardware T11-L3 and left hip screw too.)
This was a long recovery but even 20 years after I was able to be active with reasonable limitations as to not injure myself.

My neck pain inflamed my Occipital Nerves. This has wreaked completely havoc in my life.

Started with headaches, and bizarre nerves acting crazy almost a perfect 1" line across my head and pain shot out of the center of top of my head and shoots out in the center of forehead.
Scalp on top of my head also started burning!
The back of my head where Greater Occipital Nerve is horrible too, hair hurts bad around this area. The Lesser Occipital wreaks havoc on the bottom of my head and my ears, neck and shoulders.
Bizarre Effects:
Then these nerve started spreading like mapped out lines spreader all over my scalp, not just one side. The pain is past 10!!! Next the real strange happened.
My hair close to the scalp started being pulled down to the scalp itself all along these nerve areas. I had to pull it lose by using a comb.
Next it caused my hair to twist from the root and tangles so bad and pulls it so tight that it feels like a net around my head and I know this sounds Crazy!!!! People can actually see it and helped me comb it and watch it pull right back. It's bizarre and couldn't find any information on this at all??? Still no good resource information about scalp and hair. A rare side effect of "Occipital Neuralgia"
It has spread severe now and my eyes are affected too they have swollen and hurt, my entire forehead, and my ears rings too, and headaches are so intense it makes me vomit. I get dizzy and head pressure is so bad I cannot be active anymore. My home and yard is a terrible mess. It's taken my life away...
I had very long hair, cut it to my shoulders hoping it would help. Now I shaved my hair completely off! It helped stop the tangles but not the pain. I can only wear a wig very short time because it hurts, and even a scarf too. I paid several hundred to get a quality wig hoping I could wear it longer. I only have slight spine stenosis around C2-C3. I couldn't take anticonvulsant medications that were suppose to help. I have suffered severely for over a year now.
After MRI & X-RAYS I was sent to a Neurosurgeon, said no surgery could help. Went to Pain Management and not even opiates help. I'm out of options on medication so I have no releif.
I just started acupuncture and physical therapy. At first it actually gave me a few short breaks from this constant painful effect I am experiencing. But they started treating the lesser Occipital area which has blown the effects off the charts if 1-10 it's 20 now.
I just don't think I can endure anymore pain that's constant, I truly do not want to live if I cannot get better!!!! I have never been suicidal but how much can a person take? I have tried everything Doctors told me to do.
Lucky they see it happen and know it's not imagined but very real.
Acupuncturists said it'll get worse but it'll get better by this acupuncture. Now I am terrified if it continues getting worse by this treatment and will stay worse vs making it better.
I am now reaching out for help any and every where! You are not alone on trying to figure out how to fix Occipital Neuralgia.

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Nik,
Whether your problems are from MS or neck damage or something else, I think the most important part is what can you do for relief? Have you tried a combo or acupuncture and massage? I’ve been on a routine of one of each weekly that after about 3 weeks really started to help. I also have used dry needling and laser therapy with great results. From a pharmaceutical perspective a combo of Oxy 10-15 mg and muscle relaxers night and day really helps me. Currently We’ve added Lyrica 100mg at night so I can sleep because the sheet rubbing against my leg felt like I was being assaulted with an electric sander.

It’s taken me time to sort through neurologists and pain managers (even firing a few) to get a team that is supportive, responsive, and ready to help. Right now my left leg is so nervy, extremely painful to the touch, burning skin, paralyzed foot. We think during surgery we stretched, stressed and bruised my L5 nerve root which is left leg. There’s nothing to do but wait while it heals. So my team is in full pain management mode. I’m doing physical therapy, acupuncture, massage and the meds I listed above.

I share all this as sometimes the diagnosis isn’t as important as the day to day symptom management. If you don’t have a team that supports you, I urge you to find one! It sucks to live everyday in pain with no relief. It can suck the joy right out of you!

I’ll be praying for you to find some relief! Nat

PS: Melinda1964
I saw your response to Nik and my word girl, you are a hot mess! I send you the same healing prayers and hopes for pain relief. My thoughts on your situation are the same as I shared with Nik. Leaving you in that much pain is BS and you need to find some professionals that can take you seriously and care about finding a solution to managing your pain. Good Luck!

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