don't know what to do or where to go

Posted by kellybelter @kellybelter, Jan 12 6:36pm

My husband has been experiencing many symptoms over the past 5 years such as: aches and pains all over, gray vision, double vision, and will lose his balance. He has seen neurologists, rhuematologists, opthamologists, and cardiac doctors. He has had an MRI, CT Scan of his head a MRI of his back and an extensive eye exam. All with nothing found. He continues to decline. HELP!! He doesn't even want to go see a doctor anymore because we just get charged with no results.

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@jackhammer

Kelly, I would like to urge you to obtain a copy of a video documentary called “Under Our Skin,” which is about people trying to obtain a diagnosis for the mysterious symptoms which are often caused by a previously undiagnosed contraction of LYME DISEASE. Lyme Disease is called “The Great Pretender” because it can mimic the symptoms of so many other diseases. It can have many manifestations including neurological, cardiac, pulmonary, nervous, dermatological, etc. Recently the documentary was free on YouTube. Previously, it has been found on Amazon Prime Video. If you cannot find it, you might be able to find a DVD copy on Amazon or through the website of the documentary producer. A sequel was also made called “Under Our Skin 2: Emergence.” The producer’s website is underourskin.com . I hope you will let me know whether you find this in any way helpful. My wife and I both endured a long and difficult battle against Lyme Disease and won. Of course, I am not saying this is the cause of your husbands ailments but I would like to suggest it as a possibility as a non-doctor layperson who has personal experience with the disease. If nothing else, you will be able to understand from the interviewees in the documentary that you are not alone in struggling to find a diagnosis and coming up short on answers. I feel that Under Our Skin will be worth the small price of the video (and can be found for free) and is definitely worth the couple of hours invested in watching it.

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Thank you for that. I am going to look for it and watch. He has been tested several times for lymes, but always came back negative.

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@johnbishop

Welcome @jackhammer, Thank you for sharing the name of the video/documentary about Lyme Disease - "Under Our Skin". I thought I would share a link where you can watch it for free although you have to put up with some advertisements - https://watch.plex.tv/movie/under-our-skin.

Also here is a link to the sequel you mentioned on YouTube - https://youtu.be/P2Sfj8zciJk.

I'm glad to hear that you and your wife have found help and won your battle with Lyme disease.

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Thank you for that. I will post after I watch it. Thanks again.

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@kellybelter

yes, he is post covid, on a shot for pre diabetes. I made an appointment for a rheumatologist to look at autoimmune. I thought Lyme disease, but it always turns up negative.

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Did the eye doctor exam him with diabetes in mind? There are exams that look more closely at the eyes to check status of eyes to see if there is damage to the eye or developing due to blood sugar issues. Eye drops can help dry eye blurry vision surprisingly. Is he testing blood sugar daily? I hope you find answers. ANA is a good indicator of inflammation in the body. CRP can be helpful. I hope the new appointments yield results.

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Also, they probably did this, but make sure they tested for vitamin deficiencies.

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On a more general note, it is my feeling that the quality of the medical care we receive has gone down. I am a patient of the doctors at Loma Linda which is supposed to have a good reputation. In the 10 plus years I have been with them, not once have I had a complete physical examination. They only look at the numbers of your blood panel tests. I did remark on this to my primary care doctor, and he acknowledged that it was true, but then shrugged. I know I am fortunate that I don't have major things wrong with me. But what if I did? I have no one to look out or after me. I am my own advocate. I think if I had the money, I would go to either Mayo Clinic or Cleveland Clinic for a complete evaluation. In the meantime, it is day to day and doing the best I can.

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Have you gone to Mayo Clinic, or somewhere similar, with him? You can send in all of your previous test results in the portal. They can set you up with an internal medicine doctor that kind of pulls all the information together from other departments and they have every department see him that specializes in the kinds of concerns he has. If you have not tried that, I thought a fresh set of eyes on the situation might be a great help.

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@nrocpop

Have you gone to Mayo Clinic, or somewhere similar, with him? You can send in all of your previous test results in the portal. They can set you up with an internal medicine doctor that kind of pulls all the information together from other departments and they have every department see him that specializes in the kinds of concerns he has. If you have not tried that, I thought a fresh set of eyes on the situation might be a great help.

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That is going to be my next place if the doctor in February doesn't find anything.

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Hello Kelly,
Let's start with things we can do Right Now -- things that are outside of our control often we can only minimize impact from. I am talking of Pre-diabetes, a terrible condition to develop into but thankfully in your Full Control. (In fact even if we have early stage diabetes, it can be reversed, but let's not go there now)

Diabetes is a lifestyle disease, and therefore life gives ample 'notices' before it becomes even prediabetic. I'm sure you may know well. Overweight, lack of adequate muscle mass or physical strength, endurance, flexibility often with food that is not wholesome but ultraprocessed. All this also results in poor sleep and difficulty handling stresses of life.

Maybe you already know what a healthy lifestyle is -- as so many of us do -- but the problem we face, 'How to get Motivated into healthy lifestyle? And that is the question that ails modernity -- with easy access to all we can eat and not move at all if that's what we desire.
But the price is poor health.
So either we can get scared into living a healthy lifestyle ... or driven by the potential joy of life that it could be: A life that YOU want for yourself. Call it one With Your Life Purpose. Something that will make you Want you to get up next day Before you go to bed.
Did you notice staying out of prediabetes will cost you Nothing (maybe even Save U some!
I'd love hear your progress. Good luck.

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Could it be a vitamin deficiency? What is his vitamin B-12 level?

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First, his symptoms point to something that is not normal. The fact that he is getting worse is concerning.

Is there a medical school near where you live? I have heard that you can get the best care at a teaching hospital that is connected to a medical school. Maybe one of your husband's doctors can help with that.

When symptoms come on gradually, there are some odd psychological things that can happen. I know this because last year I started to slowly get some symptoms that I sort of ignored because it happened so gradually.

I got some neurological symptoms like weakness, numbness, double vision (I was visibly cross-eyed), and falling because of both weakness and loss of balance.

It was crazy how long it took me to take the symptoms seriously. By the time I was in a hospital for treatment I was, to use my doctor's words, "declining precipitously."

To make a long story short, I had a relapse of AML (which is a type of leukemia). Leukemic cells had infiltrated my central nervous system. My nerves reacted by swelling, and swelling at the point where the nerves exited the spine caused the neurological symptoms. Even knowing that I had AML, it took my doctor a long time to figure that out. I went from being able to walk for 45 minutes, to being able to only take two or three steps, with a walker, before I had to sit down.

I mentioned the psychological weirdness because if I had gone from feeling normal to falling down in one day I would have insisted on going to the ER. But because it happened over a long time, I was not shocked and dismayed as I should have been. My wife, as an outside observer, was helpful in getting me to take action. Looking back on it, it was really bizarre how I could be in such terrible condition and not be alarmed by it.

About the only other thing I can think of is to be rational, and be persistent. As a nurse friend once told me, the squeaky wheel gets the grease. I would suggest maintaining an organized collection of your husband's lab tests, and other tests that you could hand to a doctor if need be. It may not be necessary because medical records are mostly electronic these days. However, it might be helpful to have a record of the tests that have already been done, the sequence in which they were done, and the results.

I have heard that medical students are told in their training that if they hear hoofbeats, think horses before zebras. However, sometimes it's a zebra.

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