Chasing the Diagnosis - Journey of an "Interesting Patient"
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!
– 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.
– 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!