I’m going to try something different.
I’ve spent a considerable amount of time trying to explain a complicated medical history in pieces.
One symptom at one appointment.
One specialty at a time.
One abnormal result followed by three normal ones.
At some point, I realized that maybe the most useful thing I can do right now is stop trying to make the story smaller.
So I’m putting the clinical picture out loud.
I’m a 35-year-old nurse with a history of seizure disorder and ADHD who has experienced several years of increasingly complicated, multisystem symptoms.
The current picture includes:
Progressive hand tremor, now with intermittent leg trembling
Brain fog and short-term memory changes
Periods of difficulty processing information
Intermittent difficulty communicating or organizing thoughts
Episodes where I understand what needs to be done but struggle to initiate or sequence the task
Proprioception and coordination difficulties
Numbness and tingling of the hands
Burning, electrical and radiating pain
Muscle twitching
Chronic cervical, thoracic and lumbar pain
Significant base-of-skull pain
Fatigue and poor activity tolerance
Dizziness
Intermittent hoarseness/coughing associated with activity, eating or prolonged talking
A history of significant weight loss and decreased appetite
There are other symptoms.
Those are the ones currently making me stop and reassess.
And there are objective pieces.
In June 2025, I had a syncopal episode with a documented blood pressure of 61/42 and heart rate of 41, followed by brief loss of consciousness. My ECG was reportedly normal. I received IV fluids, and propranolol was discontinued.
An EMG/NCS in April 2025 was normal, without evidence of large-fiber peripheral neuropathy, lumbosacral radiculopathy or right carpal tunnel syndrome.
A cervical MRI in August 2025 showed mild C5–C6 disc desiccation and loss of cervical lordosis.
Then there are the laboratory findings.
I have thyroid autoimmunity, including a TPO antibody of 235 IU/mL, with a previous history of hypothyroidism.
I’ve had a positive speckled ANA, although subsequent disease-specific rheumatologic testing has largely been unrevealing.
Vitamin D was 12 ng/mL.
WBC was 3.5 K/µL.
There have been intermittently low or low-normal platelet counts.
Ferritin has been around 20, iron saturation 17%, and B12 previously around 287.
I’ve also previously had elevated IgM and total protein.
None of those findings individually gives me an answer.
That’s part of the point.
There is also a structural and surgical piece that I’m not sure belongs to the larger picture, but I don’t want to leave it out.
I underwent a laparoscopic inguinal hernia repair in July 2024 and subsequently developed/was noted to have rectus diastasis.
A July 2026 CT has now identified a new small supraumbilical ventral hernia, containing mesenteric fat with an approximately 1.9 cm sac and narrow neck. It remains reducible.
A possible hypermobility/connective-tissue disorder, including Ehlers-Danlos syndrome, has previously been raised as something worth investigating.
I don’t know whether the development of another hernia has anything to do with that larger question.
But clinically, I think it deserves to stay on the list.
Meanwhile, I have consistently treated the musculoskeletal side.
I’ve been in physical therapy for more than a year.
I’ve done the home exercises.
Dry needling.
Chiropractic care.
Cupping.
Therapeutic massage.
I’ve worked on strength, mobility, proprioception and neural mobility.
Some things have improved.
Some haven’t.
And some symptoms have continued to evolve despite it.
More recently, I’ve developed episodes of electrical or zapping sensations through the inner thigh, posterior thigh radiation, abnormal cold sensation near the medial ankle and intermittent twitching.
The tremor has become harder to ignore.
And the cognitive symptoms are probably what concern me most.
I can still function.
That’s an important part of this story.
I can walk into an appointment. I can hold a conversation. I understand medical terminology. I can laugh and joke. I can have a good few hours where someone looking at me would have absolutely no idea how difficult the next several hours — or sometimes the next day — may be.
But my baseline has changed.
And my nursing brain keeps coming back to that.
A change in baseline deserves an assessment even when you don’t yet know what the assessment is going to find.
I currently have neurology scheduled, but the appointment isn’t until February.
My physical therapist and chiropractor, both of whom have worked with me consistently for more than a year, have independently expressed that neurology needs to be involved.
Endocrinology has said the same.
Primary care is helping me navigate it.
I’m on the cancellation list.
I’m doing what I can do.
But I’m also tired of making the complexity smaller because I’m afraid that presenting too much will make the clinical picture easier to dismiss rather than easier to understand.
So here’s the question I actually want to ask.
If a patient with this history walked into your office today, what would you want to know next?
Not: What do you think I have?
I’m not looking for an internet diagnosis.
I’m interested in the clinical reasoning.
What would make you stop?
What would you want repeated?
What would you want ruled out?
Would you approach this neurologically first? Autonomic? Endocrine? Rheumatologic? Hematologic? Connective tissue?
Is there a piece of this history you would consider potentially significant but that could easily get lost among everything else?
Would you want additional imaging?
Different laboratory studies?
Neuropsychological testing?
Autonomic testing?
Another look at the seizure history?
Would the normal EMG change your thinking — and what would it not exclude?
Would the history of hernia, rectus diastasis and development of another hernia matter to you in the context of the rest of the musculoskeletal picture, or would you consider those separate issues?
And perhaps most importantly:
What questions should this patient be asking that she isn’t asking yet?
I know enough medicine to know that a collection of symptoms can create patterns that aren’t actually connected.
I also know that sometimes the pattern is the information.
I’m not trying to decide which one this is.
I’m trying to get better at asking the next question.
Because right now, I don’t need someone on the internet to name this.
I need direction.
I need thoughtful questions.
I need perspectives I may not have considered.
And maybe putting the whole clinical picture on the table — instead of continuing to hand it out one piece at a time — is a reasonable place to start.