u/heyitscreepy1003

I’ll start by saying two things, one I’m new here, if this isn’t allowed someone yell at me hahaha! And two I’m epileptic which generally comes alongside other neurological disorders. So recently I’ve started being screened for multiple sclerosis because I have a lot of the classic signs (numbness in limbs on one side, foot drop, vision degeneration in one eye, vertigo, blood pressure issues, muscle twitches that last for hours, losing my sense of smell, etc) and have started doing all of the testing to rule other conditions out. I’m pretty sure I’m at the last stages of tests and all I have left is an updated brain MRI and a spinal tap. But anyway tonight I was doing some research and I’m starting to wonder if my symptoms are actually just from perimenopause…I haven’t had my hormone levels tested yet (appointment at the end of the month) but my doctor wrote perimenopause in my chart when I told her about my cycles doubling in length with less time in between. Apparently that was enough to hear even though I’m only 35. I should also add that I have endometriosis and had my tubes removed as well as some lesions and a big ovarian cyst excised two years ago. Would greatly appreciate any thoughts or opinions or experiences. I hope I don’t sound foolish, I’m just really desperate to feel better and have answers.

So I just caved and got one of the Phlur discovery sets even though I think a lot of their fragrances smell unremarkable and cheap but HOOOOOLY SMOOOKES I am OBSESSED with Missing Person!!! I couldn’t figure out at first what the note was that I was so addicted to then I realized it’s SKIN MUSK. I usually avoid musk at all costs because it always always makes me smell like Cloud by Ariana Grande which is probably my number one most hated fragrance/accord so I don’t think I realized that skin musk smells nothing like other musks. If you’ve smelled Missing Person, can you list favorites that have the same vibe?! Only notes I won’t wear if they’re too forward are grapefruit, pineapple, pepper and heavy rose!

I’m (35F) so fed up with everything being stinky and dirty, he (M37) leaves his clothes everywhere and never washes his pants blah blah blah. Anyway he has this one specific habit that drives me absolutely insane. When he trims his beard he always leaves the hair in the sink. I’ve asked him a million times to clean it up. He trims his beard maybe once a week and I got him an apron for Christmas that attaches to the mirror to catch the hair but somehow every time there is still beard hair in the sink and he does not clean it up. He doesn’t even shower every day so the beard hair is far from clean. So just now after I showered I found, of course, that the sink was littered with beard clippings. So I took a paper towel and I scooped all of the beard hair out of the sink and I shook the paper towel into his dirty pants that he of course left on the floor. And I’m probably going to keep doing this until he is so itchy that he either washes his pants more often or thinks that he is getting beard hair everywhere and he should probably clean it up for his own sake because clearly he doesn’t give a crap that I have to deal with it. Anyway, question is, how else can I make this stop?

Edit: HE HAS NOT ALWAYS BEEN THIS WAY. And I can’t pinpoint when it started or what changed.

So. This all started after I (35F) quit drinking 2.5 years ago. I was losing weight rapidly and the only explanation was the lack of empty calories from alcohol. I went from 160lbs to 120lbs the first year and it has continued to fluctuate to as low as 105lbs. I didn’t start losing it more rapidly until after I had a double salpingectomy and ovarian cyst removal during which it was consequently discovered that I had endometriosis. After that I started to have trouble with constipation which I originally thought was from being on pain meds for three days but then it didn’t stop.
So I went to the doctor and from there I had a CT scan and chest xray (for the weight loss, apparently they always want to rule out lung cancer). The chest xray showed that I had thoracic scoliosis which I had no idea was even there and seemed to have come out of nowhere but was otherwise fairly unremarkable. I then had lab work done to check for the usual autoimmune diseases but everything was negative.
Next I had the CT scan which went on to show that not only did I also have lumbar scoliosis (again, out of nowhere) but I also had renal cyst and so much stool burden that I needed a fairly urgent colonoscopy. I had the colonoscopy and found no explanation for the constipation other than some minimal diverticulosis and some stomach inflammation (NSAID induced they said, shocking, constantly in pain).
Since then I have been prescribed a prescription laxative as the constipation is relentless and have added supplements and diet changes to get the weight loss to plateau. I dropped twelve more pounds this winter leaving me at 105 pounds but managed to gain back up to 118 when I started getting active again. I’m not a gym person but from March to November I build sets for a Halloween attraction so I’m very active 75% of the year but the three months off in the winter turn my body to dust. Winter is when the symptoms are absolutely unbearable.
My primary care doctor has been dismissing everything because my labs were normal so I went to my neurologist (I’m epileptic) and I told him about the scoliosis and how over the course of a few years I had started to experience left foot numbness and then eventually left hand numbness as well. I had also noticed it was sometimes hard to lift up the foot that was going numb and felt like I was walking through mud. He said he thought the hand numbness was carpal tunnel (I’m right handed…) or a pinched nerve and then through a long process of begging my insurance for a spinal MRI I was able to get them to cover a cervical and lumbar MRI but for some reason could not get the thoracic covered. I took what I could get.
The cervical MRI showed some bone spurs and mild spinal canal narrowing. The lumbar MRI was kind of all over the place and though I have many mild/moderate disc issues, there was no evidence of nerve impingement. The part I am left most curious and anxious about is that the very top of the lumbar scan it was discovered that I had a “probable intervertebral hemangioma” in T12 and despite begging and pleading with all of my doctors, no one will order the full thoracic spinal MRI.
A few months later I had EMG testing which ruled out the suspected carpal tunnel and lumbar radiculopathy. So I still have zero explanation for the weight loss, constipation, foot drop, left limb numbness, and sudden onset scoliosis. To add on top of it, I have been experiencing random bouts of severe muscle twitching/spasms, tremors after exercise, deep bone pain, muscle pain, intolerance to humidity, night sweats, slurred speech when it’s cold outside, memory loss(this is kind of normal for me from the epilepsy but I’ve started to sometimes feel like the entire day was a dream), losing my voice when I talk for more than a minute or two at a time, random issues with swallowing, OBNOXIOUS clumsiness, balance issues, slow but progressive vision loss in my left eye accompanied by seeing flashes and floaters, and just recently started to lose my sense of smell. I’m also having a very strange issue where if my neck is in certain positions I start to get vertigo and almost faint. To top it all off, about seven years ago during the process of my epilepsy diagnosis, I had a brain MRI that showed two white matter spots as well as hippocampal sclerosis…
I feel like this is pretty….obvious and while a handful of the symptoms can be roped in with my endometriosis, epilepsy or spine issues there is soooo much that remains unexplained. No one will listen to me because I appear to be in good shape and my labs are always healthy because I HAVE TO TAKE SUCH GOOD CARE OF MYSELF TO KEEP THE SYMPTOMS EVEN SLIGHTLY MANAGEABLE. Can anyone help me? Suggestions? Thoughts?