Chasing the Diagnosis - Journey of an "Interesting Patient"

Wow, @dataguy, that's quite a story line. I believe it would be a perfect summary to share with every provider you see, in advance of the visit if possible.
Welcome to Mayo Connect, where we are a community of people living with a wide variety of health conditions and disease, and trying to help one another along the way. We are not medical professionals, so cannot provide medical advice. Instead we share our own experiences and encourage one another.

After reading your great explanation of your journey so far, I have a few questions - Are all of these doctors part of a group practice and able to share their test and study results easily with one another? Do you have one principal provider coordinating all of this care?

You are obviously quite tech-savvy, so if you do not have either of these, can you collect all of your test results in electronic format, and put them on DVD or memory stick to take with you to your visits? It would be helpful for each new provider to see the actual results of all your tests, and maybe prevent duplication of tests.

Good luck as you continue to seek a diagnosis!
Sue

Thanks for the warm welcome @sueinmn ! Also, I appreciate the feedback on the overall summary! With regards to the physicians being a part of the same group/practice per se, they are not. I have been gathering all of my test results (numerical and text-based) and have created the above summary as well as a spreadsheet of bloodwork with timestamps as well as a custom metric that identifies irregularities (not specifically the ideal ranges, but if something goes up or down drastically in recent tests or is an outlier of previous tests) to help me and the physicians I share it with get a full picture. And as it deals with a physician managing my care, I haven't quite found that yet. My primary care provider is becoming more and more of a sounding board, but I actually schedule the appointments, follow-ups, and circle back up with learnings. Part of me wishes that I did have a "ride or die" physician managing all of this and collaborating with each doctor that I have to engage with so that I am not on the hook, plus I don't know what I don't know, but I am making due. My family seems to fall inside of the medical mystery area, whereas someone had cancer, but after seeing a few different physicians everyone said nothing was wrong, but she was persistent and went to Mayo since she didn't want to play games with her health, and low and behold, it was cancer, but it hadn't spread, so things worked out.

With regards to having electronic records of everything, I created a cloud-based repository (I super secured it too!) with my imaging, bloodwork, and visit summaries if anyone was really curious. But overall, thanks for the questions and the feedback! Definitely looking forward to continuing to navigate this and find out what is going on.

It looks like this has become a mission for you - have you considered checking in with Mayo or another integrated, multi-specialty provider?
I am fortunate to be in a large multi-specialty clinical group with a long-time trusted PCP who watches over everything - and with a single, integrated medical record system. It was actually a sharp-eyed radiologist, looking at an x-ray for something else, who originally suspected the mycobacteria infection that was plaguing my lungs and reported it back to my PCP - after almost 3 years of struggling for a diagnosis, I was finally referred and treated.
Sue

It has become a mission indeed! I just don't want whatever is going on to evolve into something truly debilitating because I wasn't aggressive enough or didn't capture all of the facts.

With regards to a multi-specialty provider like Mayo, I have given myself another month of the current route at most, then I will shift to preferably the Mayo clinic or first available provider of the sort. A few post here were talking about different places and more in depth about Mayo, so that has been really helpful and highly insightful!

I'm glad you have a plan for pursuing an answer. I am very fortunate to be part of a larger, muti-specialty group practice with a superb PCP, so I didn't have to venture out of town.
In the meantime, another of our mentor's brought this article to my attention, I don't know if you have seen it.
https://my.clevelandclinic.org/health/diseases/17770-unexplained-weight-loss
Please feel free to ask more questions here. I can see from the "likes" that a number of our knowledgeable people are watching this thread and may have suggestions for you.
Sue

@dataguy May I add my welcome to Mayo Connect? Your comprehensive history smacks true to the style I hold too, also!

When I lived in my last area, I used a comprehensive medical center, where all doctors had electronic access to my records. It worked pretty well. However, there were issues with the way two of them handled their practice and had to shift around, and ended up going out of network [insurance-wise] in order to get better health coverage for nephrology and oncology. In July 2019 I moved 800 miles north.

I had sourced out the PCP I wanted, and took the solid recommendation from a friend, for my oncologist, who is Mayo Clinic trained. On my first appointment with him, I queried who he is comfortable working with for a nephrologist, and went with his choice. For me, asking simple questions and getting truthful answers about medical care here has gone well. Because we are in a rural area, and lack a multi-specialty provider nearby, it is 2+ hrs each way to the oncologist and nephrologist. They are in the same city, so appts are scheduled on same day. Another specialist is 30 miles south, seen only 2-3 times a year. All are keeping each other in the loop of information, electronically. My PCP receives copies of all reports [lab and office], thus she is able to converse easily with me. I also have copies of everything, cart them to appts [or have them out in the car!], and created a spreadsheet of labwork values by year since 2016.

If you do decide to go to Mayo Clinic, I feel you will not be disappointed.
Ginger

Hello @dataguy, I would like to join Sue, @sueinmn, in welcoming you to Mayo Connect. I applaud you for your persistence and I agree that you are certainly on a mission to feel better. Many of us on Connect have also gone down this road and we have often found that persistence and educating ourselves has worked to help find a diagnosis and a treatment plan.

On Connect, we are not typically medical professionals, but patients, like yourself, who share our experiences, support, and encouragement. As you have a lot of different symptoms I'm wondering if there may be more than one diagnosis. What do you think?

Since you have a lot of GI symptoms I might suggest that you try a Fodmap diet. Here is a Connect discussion regarding that eating plan https://connect.mayoclinic.org/discussion/fodmap-eating-plan/?utm_campaign=search. It might be interesting to see if the plan will help alleviate some of your GI symptoms. In addition to being gluten-free and dairy-free, there are some other restrictions as well. If you decided to give it a try you need to follow the plan as closely as possible for one month and then add in one food at a time to see how your body reacts. It has been very helpful for many people.

I would also like to introduce you to @romeo2020, who is following a similar path as yours. Some of your symptoms are similar, but not exactly so. He too is working through the process of getting a diagnosis. I hope that he will join you in discussing his journey. Here is a link to his posts, https://connect.mayoclinic.org/discussion/help-needed-what-could-my-symptoms-possibly-mean/.

Here is a website that explains the foods allowable on a Fodmap eating plan, https://www.verywellhealth.com/foods-on-the-low-fodmap-diet-1944679.

I hope that you keep up your mission to find a reason for your health issues, @dataguy. I agree with Sue that visiting a large multi-specialty clinical group, like Mayo or a university medical school might be in your best interests as you seek a diagnosis. I look forward to hearing from you again. Will you keep in touch and let us know how you are doing?

Morning folks! I disappeared for a bit as we dove really deep into things. I leaned into my symptoms and my body's reactions very heavily over the past few months, and I had some tactical conversations with both my doctors and some colleagues in the space (I used to work in medicine), and we came up with some possible solutions. So I shifted heavily to the low fodmap diet for the gastro issues for about 2 months, incorporated aloe juice into my diet and adopted a mentality (mostly) of Hakuna Matata, which means no worries for my non-Lion King friends. Between the above, and the fact that I avoid pills unless there is a defined use for them, I started to slowly come out of some of the weird symptoms.

And as of today, I can eat essentially whatever I want, but I sort of like the low fodmap diet, so will stick to it, and the aloe just seems like a healthy thing to do in the morning as well. But most of this stuff has melted away and now, I am focused on maintaining this state for another 2-3 months, then I intend to branch out and get back on the workout bandwagon. I still have some pain, and some challenges, but we are tackling those in non-medicated ways. But this is an update. Thanks for the perspective! Ya'll rock.

I so appreciate your update, @datatguy. It is good to hear that you are feeling better. I agree that the low Fodmap diet is a really good food plan for most people who have digestive problems so I am happy to hear that you were successful with this eating plan.

I'm glad that you checked back and I hope that you continue to feel better. Will you check back with Connect on occasion and provide an update?

Hi all,
Whenever I read about mystery illnesses with many symptoms, I don't feel as alone. I was an pretty good athlete and hit the gym most days. I'm a 68 year old man and have had 10 surgeries from sports (knees, elbow, shoulders), but still played all sports until 2012. In 2012, an insurance exam picked up Hep C. This was before all of the new medications were approved by FDA. I went through 2 hellish treatments using Interferon and a couple of other torture pills. Treatments were a failure until the new treatments were available. 1 month of treatment made it undetectable to this day. January 2018 during a physical and other tests, I was shown to have Mantle Cell Lymphoma (hardest to treat). While my care team suggested a series of chemo, ending with a bone marrow transplant. Immediately went to MSK and was lucky to be accepted into a trial that didn't involve bone marrow transplant. 15 months of chemo with monthly weekend stays at MSK for intense treatment. After the 15 months, it was undetectable! Still have to get tested twice a year, and still no detection. OK, now the tough part;
I had a bulging disc in my upper spine (neck). Was able to see the top Neurosurgeon at Columbia and was talked into a posterior spine surgery for nerve decompression with fusion from C-2- T-1. Surgery was not only horrendous, it was a failure. A year after the surgery, I went for a revision that also ended up a failure. Now it's symptom time. Long Covid that has taken all of my energy and takes me 3 hours to get going every day No medications made it easier to get going and get out of the fog that lasts most of the day. A few months ago, I had to be taken by ambulance from my internist's office to the hospital due to A-Fib. HR was 160 at rest. Have been taking the protocol meds ever since that day, and am still in A-Fib. Doctor wants to perform an ablation, but am getting other opinions to hopefully come up with other options. In addition, beginning 2 years ago, I began having issues with my eyes. Take dry eyes out of the picture after being treated with everything known to man. I've been to 5 different Ophthalmologists and am going to a Lid specialist in 2 weeks. Nothing helps the irritation and pain in both eyes that never stops. I'm currently seeing a special Physiologist and PT practice that she works with. A mix of Eastern and Western medicine that understands what I'm going through. She's like a God to me. PT is way different than I'm used to and seems to be helping with all of the pain from cervical surgeries. Numb fingers and toes, pain in both shoulders and elbows. There are times I'm lying in bed during a pain episode thinking how to end it all. That's about it for now, thanks for reading