Hi everyone, I’m anxiously waiting to get an MRI, been playing phone tag with the office for months, and I think sharing my story would be a good way to get out of my own head about this.
My story began two years ago, in my fall semester of sophomore year. This is when I began noticing pins and needles in my legs and numbness at random times. I’m a dance minor, and later that year I was working towards our spring concert when I started getting pain in my legs. It presented like a bad case of the shin splints, and when it lasted over a month I started seeking medical care. I first went to an urgent care that took x-rays of my lower legs and found nothing, so they referred me to a leg and knee specialist orthopedic. After an assessment and unsuccessful trial of pain medications, I began physical therapy.
By then, the pain traveled to my low back and would move throughout my legs. After an incident of urinary incontinence, my pt referred me to a spinal specialist to rule out cauda equina. When my lumbar MRI was clear, I was diagnosed with sciatica and referred to see a rhumetologist and a neurologist. This was in August of 2023, and the next neurology appointment open was in February 2024. Luckily, I was able to see a rhumetologist before then, and we began assessments and treatments for arthritis. I got bloodwork done that showed I had some kind of autoimmune disease, and a severe vitamin D deficency. I tried a couple of arthritis medications, but none were able to help. After doing some research on hypermobility and bringing it up to the rhumetologist, I was diagnosed with hEDS and I was satisfied with this answer. I was reffered back to physical therapy, but I never found the time or money to go consistently.
When I finally saw the neurologist, he ordered a neuropathy test, more blood work, and three MRI scans of my brain and cervical and thorasic spine to check for MS. I got the other tests done quickly, and all were clear, but my insurance is a pain in the ass when trying to get an MRI. My first lumbar scan took months of back and forth to try and schedule at a place that would take my insurance, and after one difficult week of trying to get these new scans scheduled I sort of gave up on it. My neurologist made it seem that it was unlikely to be MS, and that it is rare and uncommon for my age, so I again was satisfied with my hEDS diagnosis and paid little mind to getting these scans done.
It wasn’t until September 2024 when I took a neuroscience class that I learned it was more likely to be MS than I thought. After learning that symptoms often start in the early 20s, affect females at a higher rate, and can affect cranial nerves surrounding visoin, I became more concerned. Looking into the specific early signs of MS I’ve realized other things that I did not know could be connected.
I’ve always had poor vision, but I recently have had frequent double vision and trouble focusing my eyes. I have had depression since I was a child, and chronic fatigue and chronic nausea that has worsened over time. I also have had GI issues for a long time and am almost always having either diarehea or constipation. In the last few months my back pain has become constant and I am becoming increasingly intolerant of exercise. My legs get so tired in the middle of my dance classes, and I have been getting nausous or actually vomiting when doing a high energy dance.
I am still trying to get my MRI scheduled, my insurance only allows me to go to one location and with my college schedule it is very difficult to get in contact with them at the right times. As a neuroscience major I have been very withdrawn from my classes because anytime I engage with the topic I think of the possibility of me having MS and begin to spiral and get completely distracted by the thought. My dancing is also taking a major hit from all of this and I am so afraid I might lose my ability to dance completely.
I don’t know exactly what I’m hoping to get out of posting this, but getting these thoughts out will maybe clear my head.
A friend of mine who was a medical student 40 years ago convinced herself in the first year that she had a particularly hideous form of cancer that would require half of the lower body to be surgically removed. She bore this fear in silence for a while before it became clear that some of her classmates thought they had it too. None of them had it, of course. But they had all been taught enough about it to think they might (they just hadn’t been taught quite enough to know they hadn’t). Studying neuroscience when you think you have a CNS problem can probably do something similar. I’m not saying I don’t think you have MS because I have no idea. I’m just saying that your academic knowledge put you in a suggestible state. I hope that you get some answers soon.
Hi there. Really sorry to hear of your anxieties and my sympathies to you.
As I understand it although MS symptoms can appear in early 20s ( and in rare cases at a much earlier age) that isn’t typical.
My stepdaughter has hEDS and I’m going to stick my neck out by saying that many of the symptoms you describe do sound familiar- symptomatic of hEDs. My stepdaughter isn’t shy about giving us updates on how she is and from those updates I recognise much of what you are saying. She rests a fair bit and seems to find a magnesium drink helpful - I currently can’t remember what it’s called but will let you know (she gets cans of it from the supermarket)
It’s called ‘Oshi’