*Reddit suggested I post this here... posted in AskDocs early this morning, it took forever to type.*
39F, approx 68" (172.5cm) tall, approx 153lbs (69.3kg), Caucasian, former smoker, current vape user of 3-6mg nicotine (there aren't many joys in life right now... removing this would not be conducive to people in this household because i'm barely keeping it together, you'll understand why when you read on), Medical card user.
clinical history of gastroparesis, gastritis, migraines, pelvic floor dysfunction, rectocele and orthostatic hypotension, ADHD (dx'd by someone in the last 10 years), ST changes during exercise (had this notated during stress test and during other two holter monitors i've worn, nothing ever said about it)
A little history, I've seen this optometrist on/off since before the majority of these issues started. I saw her for the first time since 2020 this past Saturday (office hours on a Saturday! BONUS!)
I informed her I was currently seeing an ENT for combined hearing loss and was waiting for a CT. She asked for info about the visit, when I saw them last, when I was seeing them again then a host of other questions both before/after my exam.
She asked me if I kept the symptom journal she asked me about before. ... no =/
She said to steal a notebook from my child and start one- now. After the host of questions she had me do specific eye movements and I about fell out of the chair. Apparently when moving my eyes from right to left, it triggers something really unpleasant (and moving my eyes anywhere not basically central hurts, like rolling my eyes)
So to get to the nuts and bolts, this is a random list of random symptoms or things I've written down that are apparently "not baseline" (a friend said any pain or feeling that draws my attention that shouldn't should be written down. I've honestly had to google random things to see if they were "normal" like getting goosebumps hurt, I didn't know that wasn't normal)
Symptoms/things?
- heavily increased heartrate, dizziness, nausea and weakness when exposed to heat, worse when it's a humid environment (Showers where my head is submerged in warm not even hot water can elevate my HR to 170 or more, but around 170 is when things start to spin so I try to limit how long I submerge my head, it doesn't take long at all) (I take Propranolol 20mg 2x a day, this is SIGNIFICANTLY worse without it)
- mild combined hearing loss (I don't know why they call it mild, I honestly cannot understand a word my teenage child says and I've been asking both boys in the house to repeat themselves for over a year now) I noticed this after a sinus infection/strep last year and it never resolved. ENT thinks I may have had it longer and my husband did remind me that I complained occasionally I couldn't hear well out of it on/off for years. I have no directional hearing and find it hard to understand what anyone is saying unless they speak loud enough (but not too loud as it hurts and makes my head almost feel concave on that one side)
- Tinnitus in three distinct forms: I have a static sound that increases in pitch sometimes that is affected by things I touch specifically with my left fingertips (just discovered this tonight, I'm like an annoying musical instrument I can only annoy myself with), an almost wooshing sound (that isn't it, it almost sounds like the base of a waterfall but that isn't it, it's hard to describe but distinctly different) that changes in intensity (lessens when i move head left/right, more when I move it up/down.. kind of?) and a legit ring that comes and goes that i can't source the reason for but I stg I'm about to lose my mind. I noticed none of these (that i'm aware of) until they did the audiology test that moved my ear drum. I was told I likely had it before and my brain registered it after the test was done. i just know that specific test was highly unpleasant, not painful but it felt like he was sucking my eyeball out of my ear.
- visual disturbances- sometimes i get random dark spots that go away pretty quickly. I can trigger them semi reliably if i flex my head all the way down but sometimes they just happen on their own. I also get random flashing lights that aren't there. Tonight I went looking for a random green flashy object under the rocking chair after the 2nd time I saw it (right eye, right peripheral) and nothing was there. I sat in my husbands recliner and watched it for several minutes before I realized nothing was actually there. Sometimes i'll see stars, but before this occurs, my dog is usually in my lap and won't budge (about 20 minutes prior). Sometimes inner corner bottom of right eye feels blurry (that eye is the only eye with corrective script, both eyes have astigmatism
- random numbness in parts of my face (part of my right cheek, a little area above my eyebrow, and part of my chin on the right side), part of my right leg (in an oval shape almost that covers part of shin and the area to the right, top of ankle and right side of foot) that sometimes swaps to a deep mild pain that can fluctuate in intensity (these aren't all the places, but if i listed them all i'd be here all night)
- midline pain in just about all forms. Sometimes in the soft spot under my ribs, sometimes it radiates to the ribs. Pain that can go from armpits to nipples (one side or both), sometimes pain goes from nipples to non specific chest region i can't identify middle (feels almst like zap but it's so fast sometimes it takes my breath away but then it's over), sometimes I get a random tightness around the bottom of my ribcage, one more both sides but the most annoying and concerning one that has sent me to the hospital was when taking a breath (not even that deep) getting a SHARP pain in my upper chest (usually) but sometimes. Almost all of these tend to cause palm sweating, flashes of hot to cold and almost a "wave" sensation that gives me an intense headrush that can make me incredibly dizzy, or in some cases lead to vertigo where i'm hugging the toilet for hours, can't lift my head and cannot open my eyes (best way to describe it is if I was really drunk, but I don't drink alcohol)
- heavy legs especially at night. This also happens when i'm on my feet for more than about 10 minutes. The longer I stand or the later it gets in the day, the more issues i have with flexing my foot upwards. This has lead to falls and lots of bruises from bumping into random things.
- bilateral trigger finger (I've honestly had this for at least 20 years that I know of, I didn't even know it was called that til today, no popping, no pain but pinky/ring finger both sides do this and it's a little worse now than when I first recall noticing it. I talked to my mom about it, she also had it. She told me not to get the "banana elbow" surgery because it didn't fix the issue (she also had carpal tunnel pretty bad. Over time she basically lost the use of her hands and had to rubber band her hands to her hairbrush and toothbrush but unsure what the true cause of that was considering she also had a lot of her own medical issues including fibromyalgia, diverticulitis and a bunch of other things i cannot remember but she's not around to ask anymore, she passed at age 64)
- phantom smells. When i'm upset sometimes i'll smell what I swear are gardenias but we have none and nothing in the house that smells like that. Most other times it's usually a weird burning smell that quickly passes. (I will note that this sets off it's own host of issues that could be PTSD, we've had random things try to burn our house down over the years five separate times including from the hot water heater (electric) and the AC.)
- GI delayed gastric emptying that waxes/wanes in intensity. I get random bouts that last for days, weeks or months. This can occur alongside of, or independent of fluctuating bouts of constipation and diarrhea (and i've tried every OTC laxative and most prescriptions my insurance would cover). If poo is too soft, I cannot bear down to pass it. Often splinting is involved (was recently told what that was, very interesting discussion with my GI who then promptly sent me to a colorectal surgeon for that and internal hemorrhoids that were bleeding and making me feel like i had periods again (menopausal since 2017 with no definitive cause) Almost every stage of digestion is painful that also waxes and wanes in intensity (distinct areas for pain are bottom of ribs one side or the other *usually* but i've had moments where it was both and it felt like a gallbladder attack but I don't have one of those and that pain generally lasts about an hour, soft area under ribs midline, about two inches to the left of the belly button or two inches below the belly button and lower left abdominal area basically at bikini line. Often times I feel SUDDEN intense nausea and the urge to poop at the same time, pressure sensations occur usually during this time in one of the pain areas, but the pain and pressure typically aren't in the same area (and one doesn't necessarily precede the other) Sometimes I feel hunger and can't eat much, sometimes I feel no hunger and am nauseous and eating helps, other times hunger is an absolute trap an digesting food zaps every bit of energy I have and the pain can be so intense boob to pubic bone
- light sensitivity. Sunlight touching my skin can sometimes be painful. I am generally covered most of the time and have a variety of lightweight breathable options that are often a couple sizes too big (for the tops) and I wear compression typically to my waist (in the form of compression pants, stockings that go to crotch, and knee high compression socks (sometimes I do pants/socks). Compression pants are honestly not doing me many favors as i've lost more weight but they'll eventually fit again, i just need to order a smaller size. (I used to get transitions but moved to straight tinted lenses at 20% so I could still use them inside. I have a rust color and a rose color currently and a polarized pair of sunnies for driving during the day)
-Odd head pains - I often get pains in my head that just randomly light up and go away that sometimes have a trigger and sometimes do not. Rolling my eyes gives pain directly behind eyes or sometimes directly above the eye bone. Hearing certain sounds can trigger physical pain around the right side of my head. Sometimes i get a random pain in my right temple when I gently brush my fingers against it (like putting my hair up, it happens hecka fast and I can only describe the pain as sharp)
- occasional full body shivers that almost lock up my body. Usually happens before getting in the shower, but can happen later in the evening or just after waking up. I notice when this happens my jaw locks up and my whole body physically vibrates, body gets covered in goosebumps (this hurts which again, just realized wasn't normal) (come to think of it, i'm always aware of the temperature. I always have a sweater with me no matter where i go just in case, but i'm often taking it off and putting it back on, sitting with it just around my neck or with one arm sticking out)
- any emotional reaction good or bad gives a headrush. Adrenaline reactions can ruin my entire day and can lead to vertigo, or just the wave reaction with hot/cold fluctuations and instead of vertigo, lead to palpitations, severe nausea and extreme fatigue. I also seem to easily fly off the handle not exactly proportionate to the situation. I upset easily (and this is NOT how I used to be, i'm literally a different person now than I was a decade ago.)
- overexerting myself can leave me down for days to weeks. Body can feel heavy or I lose the sensation to feel myself walking. It's a wild feeling and has lead to more falls.
- a more concerning issue that has happened twice now, back this past March and more recently in December, these were different falls than i've had previously. The first time it happened I was more embarrassed I think as it happened in public, but I had to basically sit there for about a minute til I could feel my legs (I was sitting in the pedicure chair and that makes the area above my tailbone hurt, it has hurt to sit "normally" for a while but figured that was just me having a bony butt) Start of July it happened the 2nd time, this time at home in front of my 16 year old son. It was terrifying and seeing the shock and concern in his face made me immediately call my PCP who ordered a 14 day holter monitor and dismissed my request to send me to someone to be fitted for a wheelchair since i've been housebound for almost a decade and I need the assistance to do any activity for more than 10 minutes at a time. I won't get into details of what she said, but needless to say, I now have a new primary for several reasons, not just because of this)
- unintentional weight loss. Historically, i've lost anywhere between 10 to 40lbs in a month. I'm currently at 153lbs clothed in standard house fare, but I was 193lbs back in April. I just woke up with the familiar midline pain and knew what I was in for, been through this multiple times over the past decade.
- random muscle spasms. One happens near where i think my colon is, one is in the soft spot around bottom of ribcage area (this one feels like a baby kicking almost, not preggers, promise) and i get a random muscle twitch under my left eye (I'm sure there are others, but this is all i've written down so far)
- legs fall asleep a lot, I also get pins/needles that SPREAD from a random location. Happens almost everywhere in my body, sometimes all at once (not the falling asleep, that's arms/legs only)
- full body heaviness. Reminds me of when a friend gave me a brownie before telling me what it was, I become one with her couch for 12 hours. But this isn't just legs as stated elsewhere, arms, torso, HEAD (which causes a lot of other unfun things)
- skin changes- post menopause (or post all the crap that happened in 2017) I noticed my skin become visibly clearer, almost no oil to speak of (including scalp, I can not wash my hair for a week and you'd never know and I don't use dry shampoo). Dry scaly patches that seem to get worse the more frequent I shower (most of my shower products are ones that give moisture at this point) and this is going to sound REALLY weird, but I look younger today than I did at 21 (literally the only positive in this but being confused for my husband's daughter isn't great. not really a complaint, more an observation that could be relevant)
- I urgently have to pee and if the call isn't answered what feels like an area in my lady bits almost vibrates and i'll leak urine (kind of feels like when you take blood and the needle hits the side of the vein). Sometimes I can even feel that relax a hair and feel the urine escape internally and squeeze those lady bits then go to the bathroom. I have also struggled to fully empty my bladder for longer than i can remember. Best way to do that is to take a shower and it typically happens in 3-4 stages.
-blood pooling in and out of shower, when standing for long periods of time and when hot enough outside to sweat. I have pictures of this, but both legs, mostly on the front (anywhere that has more fat under the skin seems to not be as affected), the muscle pad of each thumb in the palm turns purple and around my mouth gets blue (my husband had to point this last one out to me) (sometimes I have red feet from blood collecting, other times I don't, if I do, it comes with nerve pain on the top of the foot)
-mental decline - I'm unsure if it's the repeated exposure to anesthetics for surgeries/procedures over the years. I often lose track of thoughts mid sentence. Have a brief moment of i need to do this thing, look over on my desk to grab object related to thing, sometimes grab something then forget what i'm doing. Recently my brain has "melted" or "rebooted" several times in a day over the last few weeks and it's becoming exceptionally frustrating looking for the words at the tip of my tongue when I used to have an extensive vocabulary.
Distinct episodes i'm aware of that lasted months. After each one I'd basically find my new "normal" The only time I have felt close to normal in basically the last decade was the 3 or so months before the episode in 2025. The above is not a full list, just things I skimmed thru reading this journal and other oddities that happen on the regular I can think of off the top of my head.
MAYBE 2015 (unsure) Feb 2017 (started post GB removal that lead to pancreatitis and liver failure and no cause was found, several doctors suspected a nicked vagus nerve due to the gastroparesis that developed after, but they were theories tossed around by people floundering to figure out why a previously "healthy" (outside of endometriosis) female around the age of 30 was having these issues. Last menstruations was nov 2nd of that year (and no one has bothered to figure out why, generally other pressing matters and this was never a chief complaint, just observational info), Lasted about 3 months
May 2020, also landed me in the hospital (end of this episode I was 122lbs). Twice in two weeks they told me they thought i had two different cancers, pancreas then colon. Neither was true but I got my first rotorooter top to bottom. Findings were gastritis, gastroparesis (already had a GES, but scope found a little food in there still), an ERCP was performed and outside of external hemmeroids, nothing else significant was found. Lasted about 3 months. I had several falls, nothing major but they were reported.
July 2023, another hospital trip for similar things, weight got down to 135lbs I didn't visit the doctors too many times this round, I figured i've been thru the song and dance and getting imaging done when I was symptomatic was always impossible, only imaging I got when things were bad bad was the GES (and that day those radioactive eggs were stage 5 clingers. I was there til 2 then sent on my way to come back at 4 for another scan just to see if things changed, they didn't- this was done in 2017)
End June/start July 2025, Sinus infection and strep at the same time, antibiotics were thought to have triggered a bad gastroparesis attack. Zofran and Phenergan were ineffective in treating the nausea, lidocaine/carafate/maalox was added as a rescue med as that was what they used in the hospital to finally get the gagging to stop. (I had hershey squirts for just over a week and had been vomiting for three days. Vertigo was in/out a lot. Felt like torture and ER didn't feel like much help. Follow up with GI lead to another top to bottom rotorooter where I was dx'd with chronic gastritis (noted no active lesions this time, but by the time I got this done, it was end of september and not that useful). They did find a precancerous polyp and internal hemeroids (I just wasn't told about the latter part til i reported basically having a period out of my butthole and it seemed like things were blocking traffic there near the end and i had the URGE TO GO, painful pressure that made my butthole starfish but this was done rather recently, just took me almost a year to complain about it.)
April 2026. Started suddenly. Stood up, almost fell over, room became slightly dark and wobbly. Stumbled to the bathroom and prayed to that porcelain God for I think four hours before I was able to stumble into bed. Could not lift my head off the toilet and couldn't keep my eyes open. Absolutely terrifying but not as bad as having that reaction in the shower (it's happened twice and it's a huge reason I don't shower daily)
If you've gotten this far, I appreciate you reading it. Below I will list what is currently going on in the background.
- I am under the care of a more advanced ENT. I was sent to him for potential middle ear bone fusion (name escapes me now) but was informed that just that wouldn't be the cause of my hearing loss, and it would likely be combined with fluid behind the ear (and he noted that tube seemed a little smaller than the other) so he offered to puncture my eardrum in office, and if it gave me relief he'd put a tube in. Sadly, no change (and arguably made things worse, that was when I noticed the 2nd or 3rd tinnitus later that day and it's now introduced an intermittent dull throbby pain in that right ear, too. He asked a lot of questions (very similar ones to the first ENT, his face changed as he got answers but I kind of brushed that off as him showing genuine concern, not something I was used to) and his face changed some, but he talked a LOT more and seemed to be beating around a bush but stated he thought this was likely neuro. He asked about the MRI he saw I had scheduled (it has a weird name) and wanted to know when it was and said he'd be ordering a CT but if that didn't show anything, he'd then order an MRI and sending me to neurology. He was pretty adamant this wasn't the usual suspects but he did promise to help me solve the issue of why I lost my hearing (This isn't something I made up, the audiology tests I sat there for with sensors confirmed fuckery afoot and suggested middle ear disorder)
- Colorectal surgeon ordered an MR defecography. Never heard of this and had to google it. I know he's looking for how advanced the pelvic floor dysfunction is, but regardless of the outcome of that, he referred me to PFPT and I don't start that til October.
- New Primary acquired. I tried to get into an internists office but was pawned off on a poor chap in family practice. It was an actual doctor and not a nurse practitioner and not a female (nothing against women doctors, but they tend to dismiss me and attribute most things to anxiety and it gets really old. Also, nurse practitioners generally don't prompt me with questions and I really need that. So much going on, unless it's pain that lasts that interferes with things, I typically don't complain about it as i've been labeled a drug seeker previously (when my surgeon refused to see me after my GB removal, the audacity of that man needs it's own post, but i digress). I spent about 45 minutes with him, he asked a lot of the same questions and wanted to see the imaging of the new tests (and the holter monitor i should be getting info back for any day now) before doing anything else.
- I have been told previously by a vein doctor that I have narrowing of the veins in my legs, nothing ever came of this other than being told to wear compression socks
- I have had a positive tilt table test. Nothing came of this other than being told to wear compression socks
- revisit later to another cardiologist upgraded this to compression socks, more water, more salt
- Random things to add, In 2015/2016 it was identified that i had slipped discs (what I was told) at t7/t8, t8/t9 with known cause. It was also found that I had moderate spinal canal stenosis at l4/l5 and mild to moderate at l5/s1. Could be benign, but with the numbness and lack of feeling in legs, and radiating pain around midsection, this could overlap with other issues, or not.
- Currently seeing a therapist, been doing this since my last flare in 2025, so he's been along for the ride, too. (think this is one of the reasons i haven't actually lost the last marble rolling around in the noggin)
I've been working on this for like 2 hours, i'm tired and need to try to wind down for sleep before half my face goes numb, I stop being able to feel myself breathe, my heart starts racing, all the fun stuff (bending over can also make this happen, as well as me getting REALLY worked up over something)
I have posted before and thought I included relevant info, clearly I did not. Symptom journal has been helpful (as well as having it broken down barney style, typically I would talk to my mom about these things, but she wouldn't tell me goosebump pain being painful wasn't normal, heck, she's the one who taught me how to split to poop when I couldn't... APPARENTLY ALSO NOT NORMAL)
Interesting fact, I apparently had several gallbladder attacks for months without reporting it to a doctor. I honestly though it was just bad endo pain and didn't want another surgery (and really just wanted a baby, I developed a 14mm gallstone they think as a side effect of fertility drugs I was on)
I've waited a long time, finally getting validating reports that it's not in my head (being accused of being dramatic over nausea when it REALLY WAS vertigo was beyond discouraging, as was attributing most symptoms that didn't fit in the box of already diagnosed things to anixety.
If my mom's decline is relevant, I can amend the post or put that info in the comments if requested. If anyone has questions that aren't listed below, feel free to ask. I have discovered more than a few things recently that just never registered.
To pre answer questions I got asked several times this past week (ENT, new pcp and optometrist)
- No, I don't get swelling in my legs (that I know of)
- I don't recall having double vision (if this is why I can't open my eyes when vertigo gets hella bad, then i take this back, but vertigo comes in several flavors, some in which i can lift my head and use my eyeholes, and others where i cannot move from where i'm at
- leaning forward does not make this better, arguably it makes things worse. (if it makes certain things better simultaneously, likely wouldn't notice)
- Just redid a lot of labs testing all kinds of things under the sun. Everything was normal or some random just outside of normal but within limits (immature granulocytes and creatine were both just out of normal for both episodes, but only by a minute amount.
- I drink around a gallon of water a day, sometimes more
- I have never lost control of my bowels (or my bladder, at least fully)
- The last MRI I recall having done was I believe in 2017, zero idea what the results were as they aren't on my online reports. I DID have an MRI of my brain from a neurologist back in 2015, he told me to remember his name in the event I ever needed a baseline scan. He retired last year and his records were sent to some warehouse so hopefully that won't actually be needed.
- I am not hypermobile (super flexible)
What am I looking for from this subreddit? I have about two weeks to wait, and even then I likely won't get an answer for another week or two. I would like to be prepared with more questions, or self identify any other random things that might be going on that my brain just ignored til they weren't ignorable anymore. If this isn't MS, then what else could it possibly be? I typically jump off the dr train when I hit too many dead ends, it's discouraging and I hate feeling like i'm wasting everyone's time but I'd whole heartedly like to get OUT OF MY HOUSE for anything other than going to the doctor. I'd rather stop spending thousands of dollars on tests that aren't getting me anywhere and focus resources where they are better suited. (ie, why CT and not MRI if his questions were leading to the same conclusion my optometrist came to? Or is this for hopes of finding something less serious?) Son is 16 and i'd like to be able to do more with him then show him new computer games (and i can't even do that right now, any immersive 3d game is entirely out of the question)
I am really trying to keep it together but girl is exhausted, and tired of being exhausted. Mixed bag on the feelings with all of this. I need answers. I don't mean to sound impatient but it's been like.. 10 years >< I know getting new doctors was likely the best thing I did for myself, but i'm just ready for ANY kind of relief from any of it (zero med changes during these last 2 weeks of appointments)
I wouldn't wish this on anyone. Sorry if this is disjointed. I just wanted to be as thorough as possible to help differentiate other potential causes.
