My Wife Will Die If I Can't Find Someone to Help Her

Posted by laurie6713 @laurie6713, 1 day ago

I would apologize for the melodramatic topic sentence, except it happens to be an absolute statement of fact. There is something going on in my wife causing her to have extreme inflammation everywhere and nobody can figure out why.

This began in, I believe, 2020. We went in to a simple optometrist to get our glasses prescriptions renewed. The doctor that examined us told Lesley that she needed to get in to see an opthamalogist immediately, that there was extreme swelling of her optic nerves and bleeding in the backs of her eyes. We were able to get in to see a doctor quickly, and she confirmed, basically, what the optometrist said, and she said that there was hemorrhaging in Lesley's eyes, and I think she was the first one to say that there was too much fluid in Lesley's eyes? It's been such a long, strange, crazy experience that it's hard sometimes to put it into order.

Either way our next stop was a neurologist. He initially diagnosed Lesley initially with a pseudo tumor and idiopathic inter cranial hypertension, meaning she had too much cerebrospinal fluid. She had it drained, I think 3 times. She had at least 2 MRI's, I think, but they could never find evidence of an actual pseudo tumor or, for that matter, anything else. She just has something causing her to have too much cerebrospinal fluid. I think that was the first evidence that something was drastically wrong with her autoimmune system to me; it was clear that her body was reacting to some kind of threat and building up more and more and more inflammation trying to fight something that might not even be there.

The neurologist pulled in a neuroopthamalogist and she brought in a retina specialist. Lesley wound up losing part of her vision in her left eye, but eventually the fluid in her eyes seemed to recede. However, around the same time, she began swelling in her feet and ankles.

It became hideously painful for her to walk. She has constant pain in her feet and ankles, and has been diagnosed with lymphedema. HOWEVER........in regards to that diagnosis, although Lesley does have an incredible amount of swelling and inflammation mainly in her lower body, there appears to be nothing wrong with her venous system itself. There are no blockages, no nothing in her veins that would explain why she is not processing the fluid in her body properly.

I don't know what to do. We have not consulted a single medical specialist who has appeared to have the slightest inkling of what to do to help my wife. So she is 50 years old, with a vibrant, curious, engaged mind, being buried under the weight of her sickness. I don't even know what to call it. But I believe that if she doesn't find at least some answers, if she is not able to get any better and this goes on for years? She won't survive it, period. Whether she dies at her own hand or stages some kind of "accident", and I can't blame her. I have thought about trying one of the diagnostic clinics in this country such as the Mayo Clinic, but I don't even know what kind of specialist she needs to see.

I guess that about covers it. I just need help, a direction in which to walk, a suggestion for us to try. As long as we have some kind of hope that someone somewhere can and will help her, then we can go on.

Thank you in advance for your help and consideration. And blessed be......

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I am in a similar sinking boat; Mayo Clinic is the best! I would definitely try to get her in there. I went there previously as did my husband. I recently tried to get an appointment because my neurologist said that’s where I needed to go. My PCP recommended Mayo as did the doctor i recently saw at the ER. Was told that although I still have Humana Premium PPO and Medicare A and B, they will not see me. I’m praying for a miracle because, so far, I have been unable to see a specialist at the best clinics. My husband and I are at our wits’ end; and, we have only been battling since 12/2024. Prayers for you and your wife!

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@laurie6713
Did your wife have Covid in 2020?

Has your wife seen a rheumatologist, endocrinologist, immunologist, cardiologist and hematologist? It would be good to get autoimmune testing, hormone and metabolic testing, viral testing, etc. to see what is going on systematically.

I would also suggest your wife having her cervical spine checked with a MRI to see if there is any structural compression of spinal cord/nerve roots contributing to her symptoms. She may also want to get an ultrasound of her neck to see if there are compressed or blocked blood vessels, thyroid nodules, etc.

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Profile picture for dlydailyhope @dlydailyhope

@laurie6713
Did your wife have Covid in 2020?

Has your wife seen a rheumatologist, endocrinologist, immunologist, cardiologist and hematologist? It would be good to get autoimmune testing, hormone and metabolic testing, viral testing, etc. to see what is going on systematically.

I would also suggest your wife having her cervical spine checked with a MRI to see if there is any structural compression of spinal cord/nerve roots contributing to her symptoms. She may also want to get an ultrasound of her neck to see if there are compressed or blocked blood vessels, thyroid nodules, etc.

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@laurie6713
I also meant to mention your wife may need to see if she has enlarged lymph nodes/nodules/growths in her neck, etc. If so, it would be good to get biopsies if any found.

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Your wife is very lucky to have you in her corner. My husband is the same way—he’s always asking how my day is going as I live with chronic pain. He attends my appointments and takes notes for me as my memory gets foggy when I think hard. He often wants to “fix” it but sometimes feels helpless. I remind him that just being there and validating that my pain is real makes such a difference. Keep being that strong advocate for your wife… and perhaps document this journey for her … it truly matters more than you may realize. My heart goes out to both of you.

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Hello @laurie6713, I would like to add my welcome to Connect along with @knoxville25, @dlydailyhope and others. As a Rochester Mayo Clinic patient for many years myself, I agree with @knoxville25 that Mayo Clinic would be a good place to seek help. It can sometimes be difficult getting appointments due to the amount of requests and current demand but I wouldn't give up trying. Another resource that you may not be familiar with is the Mayo Clinic Network Members - https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members.

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My autoimmune journey began almost 9 years ago back and forth to my primary doctor and the hospital finally a rheumatologist at Vanderbilt figured out what I had keep fighting

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Profile picture for knoxville25 @knoxville25

I am in a similar sinking boat; Mayo Clinic is the best! I would definitely try to get her in there. I went there previously as did my husband. I recently tried to get an appointment because my neurologist said that’s where I needed to go. My PCP recommended Mayo as did the doctor i recently saw at the ER. Was told that although I still have Humana Premium PPO and Medicare A and B, they will not see me. I’m praying for a miracle because, so far, I have been unable to see a specialist at the best clinics. My husband and I are at our wits’ end; and, we have only been battling since 12/2024. Prayers for you and your wife!

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I was on a similar dead end and managed to get in to see a rheumatologist at Mayo Scottsdale Az. Mayo Arizona does not take any advantage plan Medicare packages. You must be on traditional Medicare. I also have Humana supplement. My care was excellent. All covered by Medicare. They run a lot of tests. The diagnosis was Polymyalgia Rhuematica. An inflammatory auto immune. To get an appointment I had to call every day and check for an appointment. Otherwise appointments are 3-4 months out.

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Mayo Clinic in this case, and I saw yesterday that they have at least this 24 hour emergency opening, in case you have to wait for an appointment.
Additionally try a nature path or homeopathic medicine.

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Profile picture for knoxville25 @knoxville25

I am in a similar sinking boat; Mayo Clinic is the best! I would definitely try to get her in there. I went there previously as did my husband. I recently tried to get an appointment because my neurologist said that’s where I needed to go. My PCP recommended Mayo as did the doctor i recently saw at the ER. Was told that although I still have Humana Premium PPO and Medicare A and B, they will not see me. I’m praying for a miracle because, so far, I have been unable to see a specialist at the best clinics. My husband and I are at our wits’ end; and, we have only been battling since 12/2024. Prayers for you and your wife!

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Has anyone looked at her liver??

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