Question about an undiagnosed illness any help is greatly appreciated

I have been dealing with an undiagnosed illness for over a year. My worst problems are severe eye pain and visual disturbances that have dramatically got worse. I have been to so many specialists had mri ct which all came back good thank the Lord. Week before last I was admitted into the university of Louisville and they still could not find out what is causing me these terrible problems. They believed me 100 % just did not have any answers. They done another mri which showed volume loss and I Pray with every ounce in me that doesn’t mean anything bad. my worst problems are severe debilitating eye pain and visual disturbances that are never ending. The worst vision problems are seeing objects repeatedly everything I look at, severe light sensitivity, flashes of light, always see light with my eyes closed, seeing moving white dots of light all the time, shadows and spots that aren’t there silhouettes of almost everything I look at bad floaters which I don’t hardly notice compared to the other bad things and so so much more. This has progessively gotten so much worse it’s almost unbearable. Also my eyes have became red almost all the time. The pain has made it impossible to live life I am honestly worried about my life. Have also been having one sided headaches for years now and seeing my heartbeat in my vision along with plugged ears all the time. Someone finally mentioned something to me that made sense on Mayo Clinic connect they had mentioned neck misalignment.
No doctor has been able to help me whatsoever but after they mentioned this I realized before this all started I had a few spells where my neck would like lock up and it was all I could do just to get out of bed and it happened more than once. I never even thought to mention this to anyone because I didn’t know your neck could affect your vision and cause neurological problems. Does anyone know if neck misalignment or something could truly cause problems like this? I am beyond desperate for any help if anyone has any input I would be more grateful than words can say. Thank you so much and God bless

Yes I was admitted into university of Louisville they were very caring and believed me 100 % just could not figure it out. This has taken me below rock bottom. To be so young all I ever want is my life back to be normal again. I never dreamed of suffering like this. I know it could be worse and I couldn’t imagine. Lord I just Pray with every ounce in me this neck issue could have to do with it and something simple as a chiropractor or physical therapy being able to heal it all back to normal in every way.

Addendum to my previous post- I had gone to an optometrist 3 months prior and gotten new glasses. They weren't equipped to diagnose a retinal tear.

Hi, Aaron, and welcome! It’s so scary when you get symptoms that no one can diagnose! But I might have a good suggestion for you. Have you seen a board certified allergist? I’ll tell you why I suggest this. I have a friend who has had migraines for over 60 years! On top of that, she had the symptoms of a stroke and was life-flighted to a special stroke hospital in our area. She is fully recovered but kept having the migraines.

After a bazillion tests, one of her doctors suggested she be tested for allergies. She was tested for outside allergens and also food allergens. OMG! We couldn’t believe all the things she was allergic to! Food wise, she has omitted everything that she has tested positive for and now she isn’t getting migraines anymore. She has had a couple of mild headaches in the past three months. They plan on starting allergy shots I believe and then have her add one food item and see what happens. Then she can add a second one. I told her to keep a food diary too and that can help pinpoint the things that cause her the most problems.

As far as your eyes, I maybe can help you there. If your headaches are migraines, you can get the flashes in your eyes...kind of like a bolt of lightning...with your eyes open or closed. I only get the flashes of light but no pain when I get a migraine. I have a lot of floaters in one eye only and I see an ophthalmologist every four months because I’m diabetic and they are not concerned about the floaters at all.

Have you told your ophthalmologist about the white spots that you are seeing? One fall, while raking leaves, my eyes started hurting and got red. It was on a Sunday so I went to the Urgicare and was diagnosed with conjunctivitis aka pink eye. I was put on drops and sent on my way. The white spots started increasing and by Thursday it was like I was looking through a snowstorm! I made an emergency appointment with my ophthalmologist and it turned out to be uveitis. Uveitis is an inflammation of the eye wall and can cause redness, pain, the white spots and even blurriness. This kind of sounds like what you are experiencing. Please do get checked for this because it can cause blindness if not treated. At least this is what my doctor said. You might want to get a second opinion. I always remind people that 50% of the doctors graduated in the lower half of their class and yours could be one of them. I always go to board certified doctors. Below, you will find a link about uveitis along with symptoms. See if this sounds like what you are experiencing.

https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734

Lastly, anxiety can play with your eyes too. I know you are very anxious about all of this since no one can seem to find out what is going on! I went through a bad period like that quite a few years ago and swore I couldn’t focus my eyes. I walked around closing one eye and then the other and was driving myself crazy. I ended up seeing a neuroopthalmologist also and, after I told him all I had been through in a short period of time, he said this was caused by anxiety! Sure enough, he was right!

So I think I’ve covered most of what you are concerned about...with experiences I’ve had in my life and my friend’s life. If nothing else, you have more ideas as to what may or may not be going on with you. I do believe you will get answers if you keep searching.

Remember my friend had migraines for 60 years before one doctor suggested she see an allergist! What a simple thing to do and it is solving her problem! And, they now think she actually did NOT have a stroke! They now think she has complex migraines and these can give the symptoms of a stroke! Now that she has found out the things she is allergic to and is avoiding them, her migraines have gone away! So, never give up. There is always hope and I’m praying that some of what I have mentioned in this post will help you recover.

Sherrine

Aaron:
I agree with WalkingByFaith to have a more discerning conversation with your Lyme physician about your ongoing eye issues.

Lyme Disease has disproportionate effects on neurological function, including the eye and vision.

If you have diagnosed Lyme, which it seems that you do, your visual problems may likely be enmeshed Lyme bacteria latent effects. Continue to seek Lyme specific specialists.
Karen

Aaron,

Is the doctor you are seeing for Lyme ILADS trained? Sounds like the doc may not be knowledgeable enough. Did you ask for references on the Lyme forum? You may need a different LLMD. A good LLMD should know that Lyme and coinfections like bartonella can cause a myriad of eye and visual problems.

Also, spinal taps are not the best way to diagnose Lyme and can be very dangerous for someone with Lyme.

I understand you're in a lot of pain and distress and searching everywhere for anything that will relieve the suffering.

What treatment are you doing for Lyme/coinfections? Did any symptoms get worse after you started treatment? Did any new symptoms occur after starting treatment?

I agree with WalkingByFaith . . .

If there was even a remote suspicion that you have Lyme, I would follow this thread and consult with a known/verifiable Lyme specialist. Lyme exposure is increasing. Lyme no longer has origins in rural and “back woods” communities. Common air travel of people and parcels has diffusely spread Lyme across geographical locations.

The bacterial strains that define Lyme are sleuth-like and able to cloak their cell membranes within the body, which undermines the immune assault. Lyme is able to lie in waiting, invading the body’s nooks and crannies, a sort of hibernation - symptomatic periods that can arise months after initial exposure. Lyme has a predilection or affinity to afflict the central nervous system.

Lyme stumps most physicians. A Lyme specialist is essential. It is a complex condition. Given a lack of diagnostic direction from the swath of physicians that you have seen (ophthalmologists, neurologists, et al), I would circle back and reconsider Lyme under a stronger and more focused infectious disease diagnostic model.
Karen

Hi Aaronh819 what your describing about your eye pain and vision disturbances does sound allot like a type of migraine headache. So seeing a head ache specialist might be an excellent idea! Also neck or cervical disc problems can often cause head aches of several different varieties! I was suffering very severe headaches in the lower bottom area of the back of my head and I ended up having to have a posterior fusion done with rods and pins put in cervical spine. The surgery was easy to do according to the neurosurgeon who did it, but the recovery was really long and difficult and painful! But more than worth it in the end! As it completely eliminated those head splitting headaches!! Anyway has anybody done a good evaluation and a MRI of your cervical spine? That might also be something worth checking into???

Aaronh Sometimes diagnosis can be . extremely difficult! But often persistence and perseverance is the only thing that will finally get you a diagnosis and hopefully some good permanent relief from them!!

I know how frustrating it is! I wish you well! And Good Luck to YOU!

White Beard..