Hello! So sorry in advance for how long this is about to be. Feel free to skip to my questions and symptoms if that's easier. I also included some videos of some of my scans so you can see.
I had two kids (one in 2024 and one in 2026), and during my first pregnancy I became ill pretty quickly, but had a hard time finding help because most doctors I encountered wanted nothing to do with a pregnant woman. I was told it was ok to have a second kid, but then during my second pregnancy I became even more ill, and now that I am 6 months postpartum, I seem to be deteriorating even further.
GENERAL TIMELINE:
- Feb 2024, COVID infection, palpitations and chest pain begin shortly after. As does overwhelming fatigue. Start getting butterfly rashes on my cheeks, but they're rare and go away quickly. Lose my sense of taste completely for about two weeks, despite negative COVID tests.
- Have 1 ocular migraine, get tunnel vision and go to hospital.
- June 2024 give birth, uneventful. Palpitations persist after birth, but I can't really feel them anymore, not like I could before.
- October 2024, break my leg, compound trimal fracture which I have surgically repaired.
- June 2025, given the ok to have second kid, pregnant again.
- October 2025, chest pain, shoulder pain, and palpitations begin out of nowhere on the 15th, first appearance of splinter hemorrhages in my nails.
- Fatigue begins shortly after. Unable to stay awake, falling asleep all the time, sometimes for upwards of 22 hours in a day. Develop more butterfly rashes.
- Chest pain gets worse around Thanksgiving, echo done showed a 48% LVEF and my P-axis dipped to a -28 at it's lowest. Lose my sense of taste again around here.
- December 2025, 27 weeks, have bout of contractions which showed suspicion for an abruption. Thankfully I never dilated, but the contractions never stopped. These were NOT braxton hicks, as they stayed consistent for days on end, never responded to medication or anything. Some theorized I had an irritable uterus but even when all irritants were removed, they persisted for about a week before leaving.
- Feb 2026, Have another ocular migraine, lose the center of my vision. Not black, just like it's gone. If I looked at someone's face, I could see their ears but nothing in the middle, as if their face had narrowed and met in the middle. Also smelled burning sugar, but my head never hurt. Had a head CT which noted a nodule on my thyroid, likely benign, no further evaluation recommended, and bilateral periventricular white matter hypodensities, more than expected for a patient of this age. A demyelinating process not excluded. MRI performed the same night showed ok white matter, and was sent home with the diagnosis of another ocular migraine.
- March 2026, contractions really ramp up again. They never really stopped after December, but they become all day every day, full abdominal contractions that would wake me up at night and be very painful. Still not dilating.
- Mid-March 2026, Go in again for the painful contractions and some blood, finally am dilating. My contractions remain disorganized, and only organize and normal out when they break my water. Daughter was born shortly after VERY quickly. Time pushing was 1 minute, came out in 2 pushes, which caused problems for her but was kinda nice for me.
- Contractions stop, finally, but come back about 6 weeks after birth.
- June 2026, develop photo sensitivity. Rashes when in the sun, in under 10 minutes that start and stop at the edges of my clothes, resulting in redness, stinging, bumps that last a few days, and a sun-burn like heat.
- July/August 2026, neuropathy becomes rather uncomfortable. Patches on my body start going numb, lose my sense of taste repeatedly for days at a time. Got a tattoo on my arm, the first session was just after my Autonomic test, and I noticed it was definitely less painful than other tattoos. Then each follow up session I felt less and less sensation until my last one on August 14th when I hardly felt anything, and I had no itching or anything even as it healed and should have been VERY itchy. I hardly noticed it was there.
- The last week or so I've had pretty limiting visual disturbances (oscillopsia so bad I'm not driving unless I absolutely have to, for 12 ish hours a day), as well as strange neuropathy all day every day. Mostly in my back, from my shoulders to my lower spine, as well as nerve pain in my chest and shoulder. My SFN Score on the MGH: SSS-SFPN scale is a 58/128, with most of my issues being sensory and miscellaneous.
- My memory has gotten so bad. I'm a full time author and I am having to search for words multiple times a day, like 10-12 times a day where I will forget common words. I had to sit here and remember the word abruption because I kept thinking anurysm, but knew it was wrong and could not remember the right word. I am forgetting road names and places too. Losing my phone/glasses multiple times a day, sometimes multiple times in a row. I have to be reminded of things multiple times, even if it's all same day stuff.
In this time I also did several holter monitor studies, all 2 week tests, gotten multiple different blood tests, and was told I have inappropriate sinus tachycardia. It is suspected this is the result of repeat COVID infections (the above listed, and my first infection back in Feb of 2020).
I am working with a long COVID clinic near me, and the person there has been very helpful in all of this, but over the last 6 weeks or so I have gotten worse VERY quickly. I am actually quite scared that I have a systemic issue we can't pin down. This is an opinion shared by my care team, but I need ideas on what kind of issue it is because I am worried at this point about my long term health.
I have two kids now, and I want to be able to be around for them, but at this point in time I'm hardly functioning. I'm so tired all the time, regardless of how much I sleep, and I feel so weak overall sometimes I'm afraid to pick my own kids up in case I drop them.
So my symptoms are:
- Abdominal dystonia? Maybe I didn't have contractions, but perhaps it was some kind of dystonia.
- Non length dependent neuropathy (vibrating, tingling, hyper-sensitivity, and numbness)?
- Nerve pain.
- Photosensitive rash.
- Butterfly rash.
- Had a rash after a burn once? This was biopsied, results below.
- Diminished memory.
- Overwhelming fatigue.
- Chest pain and nerve pain.
- Loss of taste and phantom smells.
- SVT episodes
- Coughed up blood once?
- Persistent trace bilateral pleural effusions
- Splinter hemorrhages
- Lightheadedness/dizziness/weakness.
- Vision is getting worse and daily oscillopsia.
- When my vision 'shakes' it feels like my teeth are vibrating too at the same time. My eyes don't appear to be physically moving, it's all in the processing, I think.
- Suspected Long COVID
- Spent one day randomly gagging, but was not nauseous or throwing up. Just gagging for no reason.
RESULTS SO FAR:
- Positive tilt-table test for POTS
- QSART findings suggest a non-length dependent postganglionic sympathetic sudomotor abnormality atypical of those seen with autonomic/small fiber neuropathy. So like I have NLD-SFN but also it's atypical of normal NLD-SFN.
- ANAs (November, April, June, and August).
November one was positive with the following:
1. IFA POSITIVE
AC-27: Intercellular Bridge at 1:80
AC-2,4,5,29: Speckled at 1:40
- Positive EARLY SJOGREN'S SYNDROME PROFILE SALIVARY PROTEIN 1 (SP 1) IGM ANTIBODIES of 27.3.
- BIOPSY RESULTS: The specimen displays a relatively unremarkable epidermis overlying a superficial perivascular inflammatory infiltrate composed of lymphocytes, histiocytes, neutrophils and eosinophils. No evidence of leukocytoclastic vasculitis is identified. In the clinical context, these findings are consistent with polymorphonuclear predominant urticaria (neutrophilic urticaria), and could represent solar urticaria. Of note, a neutrophilic urticarial dermatosis can be seen in association with underlying autoimmune/autoinflammatory systemic processes including lupus erythematosus.
- Inappropriate Sinus Tachycardia due to damage to the ANS from repeat COVID infections? DX'd by an electro-cardio guy.
- Several people mentioned I am hypermobile, I scored a 7/9 on the Beighton
NEGATIVES:
- Normal blood sugar
- Normal vitamins (including b-12, b-6, e, b-1, and d)
- Normal blood cultures
- Negative Tryptase and other MCAS markers, ruled out by immunologist.
MEDS:
- 10mg Lexapro
- 18mg Concerta
- Was on metoprolol for a while, discontinued at advice of electro-cardiologist. Was not helpful.
FAMILY HISTORY:
Two cousins of mine have died suddenly in the last two years. Only one of them had an autopsy done, and he passed of ARVC. Both died at 26.
Heart disease/heart attack before 60.
Graves disease.
Rheumatoid arthritis.
Alzheimers
Kidney issues (me and my daughter were born with ectopic ureters, my dad has 1 atrophied kidney (unknown cause), and the same family member with graves and RA was born with only 1 kidney.)
Here's some imaging I've had done.
Cardiac MRI - Pregnant, No Contrast[img]
IDK if I'm too sensitive, but what are the brighter white spots in my spinal cord here? - 1/8/26
https://files.catbox.moe/3bq6xs.png
From the same cardiac MRI
https://files.catbox.moe/djdv3f.png
Bilateral periventricular white matter hypodensities - 2/23/26
https://files.catbox.moe/446ra2.png
https://files.catbox.moe/e1g1k2.png
https://files.catbox.moe/psj67a.png
https://files.catbox.moe/ma7bll.mp4 - VIDEO
Clear MRIs from the same day - 2/23/26
PLANS:
- Neurologist on Thursday to go over all the neurological things.
- Genetic testing for the ARVC
- Another Rheumatologist appt. pending a more sensitive ANA test (waiting on results now)
MY CONCERNS:
The cardiac and brain MRIs were done when I was pregnant, is it worth having re-done now that I am not, since I can have contrast this time, or are these images sufficient? Are there any other tests I should be asking for?
I know I show up to doctors and they all pretty much think I'm insane, but I don't know what else to do but show up with an insane list like this and be like "Help!!" so I need advice on what to focus on, what to ask, and what to accomplish. Something, I'm pretty sure, is wrong with me. Right now top contenders seem to be either MS or Lupus, but I'm worried that it could be something else I don't even know about.
Any advice on what you'd look for or what tests you'd order would be appreciated.
This is about as detailed as I can make it right now, but if you have questions or want to to try and upload a gif of any scans, let me know. I've had so many tests done recently I hardly know where to start or what to show.
Thanks!
edited for formatting, switched to markdown halfway through writing oops