Chasing the Diagnosis - Journey of an "Interesting Patient"

Posted by dataguy @dataguy, Dec 27, 2020

Howdy Mayo Clinic Connect group! I hope that everyone had a truly fantastic holiday season! My family and I were low-key, which was just what we needed. I wanted to check to see is anyone else falls into the category of "Interesting Patient" with different doctors. Over the years, I have continually been labeled as interesting due to symptoms that don't match ailments and sometimes having no symptoms for things that I should (shattered bones…. but no pain, no swelling, no awareness for months). With that said, I am currently going down yet another journey and wanted to see if anyone has experienced something like this before since both myself and my physicians are drawing a blank. Plus, since my symptoms don't normally align well, I have to preface appointments with physicians stating that "normal" symptoms for certain diseases or issues haven't applied to me for decades, so be OK with taking some time to press pause, research, and circle back up so that we all maximize our time.

My Summary so far!

Core Facts:
– Loss of 35 lbs over a 6 week period (not intentional)
– After weight stabilized for a bit, and despite a clear diet with adequate calories, the weight continued to decline at a loss of an additional 7 lbs, bringing
total to 42 lbs in 2 months. (Starting place at 6’1”, 235 lbs with a muscular build).
– Persistent muscle pains, specifically in the chest area.
– Bloodwork shows the following trends since August of 2020:
– Decrease in Potassium Levels. From 4.2 – 3.3
– Hemolysis has changed from 35 to <=15
– AST Level nearly doubled from 17 to 34
– ALT/Bilirubin also nearly doubled (Still within “Normal Range”)
– Significant variance between blood taken from the left arm and right arm.
– Left-arm hematology related tests show a trauma victim (34 platelets and all other levels are extremely low) in comparison to what is considered
normal with the right arm. Unsure why this is the case.

Generalized weakness and numbness in left extremities.
– It has persisted for over 2 months.
– Diagnostic wise, MRI’s of the entire spine, head, and neck region have been completed.
– Currently getting workup with Neurology to see if there are any nerve-related issues. EMG results are pending.

Unidentified Mass on Top of Left Carotid Artery:
– Skin irritation now exists on top of area where the mass exists and it is now visible to the eye, albeit slightly. This is progressively growing.
– MRI & CT Scan has identified mass on top of the LEFT carotid artery.
– CT scan labeled it as a pre-vascular lymph node. ENT physician at the time stated that there are no lymph nodes in that area, but stated it wasn’t
anything to worry about without truly identifying what it was or wasn’t. Without clarity, will continue to investigate until crystal clarity on what it is.
– Mass was identified while experiencing a left-sided TIA (Transient Ischemic Attack — some folks call these mini-strokes).
– Mass is hard and when pressed upon creates irritation/pain in the left arm and left side of the face.
– The cardiologist believes that it might be the SCM muscle and not a mass but still isn’t completely sure. I Shared MRI & CT scans with him, and he
stated he will investigate and circle back.

Circulatory System
– Ultrasound (ABI) identified the possibility of peripheral artery disease in the left arm, only with the Ulnar artery (Systolic BP of 34). No identifiable
blockages so will require further investigation.
– Ruled out blood clot with ultrasound, however, the symptom is below:
– Left leg weakness/numbness and dragging of the leg. Progressed quickly and while stretching, there was a feeling of blood flow starting up (Similar to
an arm/leg going to “sleep” due to low circulation). After walking one day 10k steps, there was a feeling of something “changing/moving” within the leg,
and irritation in the entire leg occurred for 3 days where all muscles, nerves, etc. Flared up. MY assumption is that the possible blood clot was
dislodged, but no complications to my knowledge.
– Waiting on conclusive results from the left leg ultrasound as well.
– 2 months ago there was a bump in the same area as the Ulnar Artery in the left arm, which has had persistent issues. I rubbed it one day and it burst,
which immediately caused pain in the chest and a headache at the same time. It was sharp and my arm throbbed for a few days, along with additional
weakness in the left arm. There was also a throbbing pain in the upper right side of my back, which came out of nowhere. My assumption based on
the facts and Google (I know… I shouldn't but I couldn't help myself) is that I had an aneurysm (or similar, but an artery that was blocked) in my Ulnar
Artery that burst when I was rubbing it, instead of what the doctor’s assumed, which was a cyst. Persistent left arm irritation/pain and sensitivity in the
area over 2 months later and this occurred BEFORE the left leg issues

Allergies – Aggressive Growth in the number of
– No symptoms/reactions for some new allergens until after significant allergic reaction
– Working with Allergist to identify what is going on and why so many new allergies are emerging in a short period of time.
– Fruits seem to be the most susceptible, since Pears, Cantaloupe, Strawberries & Bananas all trigger different allergic reactions.

Gastroenterology – Persistent stomach issues (mostly managed)
– Acute GERD symptoms in Aug/Sep of 2020, no symptoms since then (At least I think).
– Diet changes have helped.
– Regular stool bleeding noticed since September of 2020.
– As of December of 2020, I noticed additional blood in stool and black “chunks” in the otherwise normal stool. Will have to re-connect with gastro last
week in December.
– Pain in the lower right part of the stomach. Possible association with gas. That is MY assumption.

Irritable Bowel Syndrome
– Foods that were digestible Sep – Nov. are no longer digestible, such as broccoli. Not sure what the cause is, but will re-engage with gastro to get a better
understanding of how to manage this. MY assumption is that this is IBS.
– Cantaloupe triggers exhaustion, chills, and shakes, which is what kicked off this journey with physicians in August. It was just extremely aggressive in
August and knocked me off my feet with chills/shakes for over 3 hours.

Unable to Associate Gastro Issues
– Gas with such ferocity that it feels as if it is moving organs around. Severe stomach and chest related pain. Gas-X has all but solved this, but haven’t
ever experienced it before. Perhaps IBS related?
– Stool has had red (not bright red) blood in it since September 2020.
– Since December 2020, noticed black spots in the stool. Assuming it is black blood from further up the gastrointestinal track but hasn’t been confirmed.
– Also, have periodically noticed some mucus but not a lot.
Certain foods are also no longer being digested: Broccoli & Cantaloupe since they still have color and form after a bowel movement.

Doctors seen so far:
Cardiologist – To rule out heart issues (Completed)
– Also to understand hard mass on the neck that is on top of the carotid artery.
Allergist – To identify existing allergies and provide guidance going forward (On-going)
ENT – To discuss mass in neck and next steps (Shifting from ENT to Vascular)
Neurology – Weakness/numbness in left extremities to see if this is nerve-related. (On-Going)
Rheumatology – To rule out possible auto-immune diseases (On-going)
Orthopedics – Investigating back issues and their possible connection to left extremity concerns above. Nothing wrong with the spine at all, so we are good! (Completed)
Gastro – GERD/IBS symptoms and persistent stomach problems. (On-going w/ colonoscopy scheduled in February since was earliest time period).

— That's my weirdness. Not looking for diagnoses per se, but really curious if anyone has heard of folks dealing with strange symptoms like this, which are all over the place and kicked off with something off the wall. But all of this has occurred since August of this year, and after 40+ doctor's visits, lots of personal research and follow-through the above is my tailor-made medical summary for all new physicians I interact with. I would also love an opinion on the summary above. Does it make sense and in a pinch, do you believe something like that would be valuable for a doctor to have?

Thanks in advance and I look forward to hearing your thoughts!

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

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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.

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@dataguy

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.

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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

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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!

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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

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@dataguy

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!

Jump to this post

@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

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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?

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