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Question about an undiagnosed illness any help is greatly appreciated

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Aaronh819
Regular Member
Joined : May 2018
Posts : 69
Posted 10/10/2018 9:25 PM (GMT -7)
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
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Chutz
Forum Moderator
Joined : Jan 2005
Posts : 9477
Posted 10/11/2018 2:16 PM (GMT -7)
Hi Aaronh819,

I'm so sorry you're having to deal with this pain and no solutions yet. Absolutely tell your doctors about you neck issues. I did some searching and reading and neck problems can lead to so many things including eye pain. No guarantees but it's well worth a try.

Also, do you live anywhere near a teaching hospital? This would be a university that teaches medicine and has a hospital associated with it. They are all over the country and are usually some of the bigger institutes. They take on cases that can't be figured out by regular means like your primary doctor and specialists. My oldest grandson had to go the the University of Washington clinic and they discovered a rare disorder he has that interferes with his breathing. They can't cure it but they can reduce the symptoms and sometimes get you into clinical trials for new treatments. Anything is worth a try at this point.

Keep in touch,
Chutz
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Aaronh819
Regular Member
Joined : May 2018
Posts : 69
Posted 10/11/2018 4:10 PM (GMT -7)
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.
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mrsm123
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Joined : Dec 2007
Posts : 1239
Posted 10/11/2018 5:27 PM (GMT -7)
When was your last visit for a thorough eye exam with an opthalmalogist, not an optometrist?
The reason I am asking is that Mothers day, two years ago, I suddenly lost vision in my right eye. Out of nowhere. I didn't pay attention to the visual floaters or things like a little black dot that came and went, or flashes of light at times, halos, just brushed them off at the time, UNTIL I completely lost any vision.
Needless to say, I was worked up for stroke amongst other things and the urgent/ER docs had no idea.
I was referred to the ophthalmologist the next morning, and found out that the retina had torn and detached. It wasn't until that office visit that they specifically asked about the other visual symptoms that I put two and two together.
If you have not very recently, make an appointment with an opthalmologist, not an optician and you may find answers there.
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mrsm123
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Joined : Dec 2007
Posts : 1239
Posted 10/11/2018 5:29 PM (GMT -7)
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.
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Aaronh819
Regular Member
Joined : May 2018
Posts : 69
Posted 10/11/2018 6:27 PM (GMT -7)
I always go to an opthalmologist. I’ve been to two neuro opthalmologist retina specialist and three more specialist to no avail. Lord please all I ever want is my life back to normal. I have been through so much it is unreal to only grow worse. Saw a neuro opthalmologist a few weeks ago and he said if it gets worse come back. I told him it was pretty much weekly so he said come back in three months. I’ve learned most doctors all you are is a paycheck to them. Very few doctors have showed compassion like they truly care. U of L neurologists when I was in the hospital were compassionate just had no idea what to do after all the tests they ran. I’m in no way talking about any doctor I’ve saw it would just be nice to know they care.

Post Edited (Aaronh819) : 10/11/2018 7:32:39 PM (GMT-6)

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Sherrine
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Joined : Apr 2005
Posts : 18322
Posted 10/12/2018 1:30 PM (GMT -7)
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
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WalkingbyFaith
Veteran Member
Joined : Aug 2017
Posts : 5820
Posted 10/24/2018 9:52 AM (GMT -7)
Aaron,
I recognized your name from the Lyme forum. Has your LLMD talked about treating bartonella? Bartonella is the one that causes all manner of eye symptoms and the worst pain.

I'm so sorry for all you're experiencing. Kudzu root and Chinese skullcap may help with the pain. You're in my prayers.

If you want to try an herb for bartonella, houttuynia is the main one. Go very low and slow, though. Bartonella can definitely cause herxing. Whatever treatment you're on could be causing herxing. Herxing is often just worsening of regular symotoms and sometimes new symptoms?

Are you detoxing? If not, that's very important. Drink plenty of water. Make sure you move your bowels daily. Soaking in epsom salt helps most people. Alka-seltzer Gold or some baking soda mixed with water can help, too. Baking soda stopped my headache this morning.

Post Edited (WalkingbyFaith) : 10/24/2018 10:57:51 AM (GMT-6)

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(Seashell)
Veteran Member
Joined : Dec 2012
Posts : 1080
Posted 10/24/2018 3:37 PM (GMT -7)
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
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Aaronh819
Regular Member
Joined : May 2018
Posts : 69
Posted 10/24/2018 4:16 PM (GMT -7)
I tried and tried to get help with the eye pain and visual trouble he didn’t know what to do. They done a lumbar puncture and tested my csf for lyme and it came back negative. So makes me wonder after all that treatment if I ever had it since it was a clinical diagnosis. It has grown so much worse it is unreal. The eye pain and visual disturbances are more than I can bare it’s all I can do to make it through each day and the muscle twitches are on another level also. Someone mentioned neck trouble could cause eye and vision problems and oddly enough I had a lot of neck problems before this started. Have been going to the chiropractor but have yet to see improvement have actually got worse. I just Pray with everything in me for an end to be put to this so I can live again. I’m honestly beyond scared for my life. Please Lord what it would mean to see a glimpse that I am healing I desperately need a miracle. Have you guys heard of neck problems causing something like this? Thank you for the reply. The things you said that helped with eye pain did it help with visual problems too? I’ve tried many different things to no avail. I honestly desperately need a miracle. I never dreamed I would be begging for my life this young.
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WalkingbyFaith
Veteran Member
Joined : Aug 2017
Posts : 5820
Posted 10/25/2018 2:22 PM (GMT -7)
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?
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Aaronh819
Regular Member
Joined : May 2018
Posts : 69
Posted 10/25/2018 4:50 PM (GMT -7)
I don’t really know if he was ilads trained seemed really knowledgeable but when things continued to get worse I couldn’t get any help. I’ve stopped all treatment everything that was going on just continued to get worse with and without treatment. Specially the eye pain and visual problems it is beyond unbearable every day is like living a nightmare. They done the spinal tap for other reasons to check to make sure there was no infection and things of that nature and went ahead and tested for Lyme in the central nervous system. I had an igenix tear at first that only showed one band positive and one more ind. so it makes me wonder if I ever had it in the first place. Only God knows how badly I need a miracle. Just a glimpse things are finally getting better please Lord. I really don’t know what to do anymore have been through so much to only grow worse
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(Seashell)
Veteran Member
Joined : Dec 2012
Posts : 1080
Posted 10/25/2018 6:31 PM (GMT -7)
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
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Beachbumgirl
Regular Member
Joined : Jan 2016
Posts : 97
Posted 10/26/2018 8:45 AM (GMT -7)
Hi Aaron
I’m so sorry you are going through this. First off, you have seen some great doctors already. That should be the tip of the ice berg! Sometimes it takes 4-6 different referrals to finally find the one that can help you. Do you have a family member or close friend that can help you find some other specialists in Neuro Opthamology ? You have also mentioned neck pain and headaches/ migraines on one side of your head. Have you seen a headache specialist? Just a thought.
Often all these symptoms become intertwined and it is hard to get to the root.
I pray you find someone to help.
Peace and healing,
Carol
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White Beard
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Joined : Missing Key Value : en-US, 577 2009
Posts : 3740
Posted 10/26/2018 11:29 PM (GMT -7)
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..
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