Sorry for the long post!
This all started a few years ago when, at about 14, I started getting extremely dizzy when I stood up. I was told it was probably an iron deficiency, but my iron levels were completely normal. They sent me for another blood test, and I spoke to a different doctor about the results. He said my B12 was low, and the plan was for me to get a course of B12 injections, but I had to discuss that with the doctor who had ordered the blood test before it could be put in place. When I spoke to the original doctor, she refused to go ahead with what the other doctor tried to put in place, said there was absolutely nothing wrong with my B12, and no further action was taken.
Not long after, I developed a tremor. It wasn’t noticeable at first, and I brushed it off as being tired or stressed, but it has progressively gotten worse. People now regularly point it out, and I’m starting to struggle with certain tasks; for example, my handwriting has gotten significantly worse because my hands never stop shaking and twitching. Yesterday, I had to ask a family member to get something that I should have no trouble picking up out of the cupboard for me because I simply could not do it.
My limbs and my face also started to go numb a lot more often. Again, I brushed this off as regular pins & needles, even when I wouldn’t be able to feel my legs almost all day. In early 2024, I got this same tingling/numbness in my left arm - it never went away. It most noticeably affects my pinky, ring fingers, as well as the tip of my middle finger, and spreads down that side of my forearm. The aforementioned twitching has been affecting my pinky and ring finger noticeably more than the rest of my hand since, and I’ve given up hope of getting feeling back in that part of my arm.
Over the past year, I feel like I’ve been mentally regressing. It feels like everything requires more effort, and just thinking feels harder. My speech has also deteriorated enough for people to mention it; It feels like I’m forgetting how to speak properly. People are asking me to repeat things several times, and I recently had a friend ask (as gently as they could) if I had a speech impediment.
I also feel like I’ve been… physically regressing? I’m not sure if that’s the right way to phrase it, but my coordination is getting genuinely awful. I’m walking into the wall every time I go through my hallway. I’m losing my balance and flailing to stay upright when standing still. I keep stumbling, bumping into things, and dropping things. I’ve never been a clumsy person, but now I feel like I’ve never met anyone clumsier than myself.
My eyes keep going blurry, like when you can’t get a camera to focus. I keep getting this weird, squeezing feeling in my chest that lasts for days, like someone has wrapped a band around my lungs. These have no obvious causes.
The only thing that’s ever shown on a blood test is slightly low vitamin D, and slightly raised infection markers - which are always back to normal when they do a follow-up. Now, I’m starting to be treated like I’m faking it.
Last time I went was the first time the chest-tightness thing happened. The doctor told me it was psychological, and asked if I was an anxious person, which (despite what this post might make you think) I never have been. I was then informed that sometime last year, a diagnosis of anxiety, which was supposedly made in 2017 when I was 11, had been added to my file. He then mentioned my other symptoms and said that he was sure they were all caused by anxiety, and that I should look into therapy.
Which would be fine, except I have genuinely never been diagnosed with anxiety. I do not know where this diagnosis came from. In 2017, I was seen by CAMHS, so I requested my complete records just to see if it had come from them, despite my reason for seeing them being unrelated to anxiety concerns. Instead of finding a diagnosis, I found they instead stated several times that I did not present with anxiety/an anxiety disorder.
I also contacted my GP and requested information regarding where this diagnosis came from, as I have no records, nor recollection, of it being made. They were also unable to locate those records.
Since finding this out, I’ve given up. I doubted I’d ever get help before this, as my mother and grandmother have struggled with similar situations for years, but now it feels genuinely impossible, because they will always defer to that anxiety diagnosis that no one seems to be able to tell me anything about - and therefore, tell me I need to figure it out on my own. But if it is psychological, surely there’s still something they could do? This is something that is affecting me every single day, progressively getting worse. I can’t feel, and can barely use my left arm, and the other trembles nonstop. I’ve had to rework my entire life around these symptoms, including having to give up on pursuing a career in medicine.
I’m well-versed in anxiety techniques, but a lot of them focus on mindfulness, deep breathing, distraction, etc. Basically, just taking your mind off of whatever is triggering those feelings. But not thinking about my symptoms doesn’t make them go away, just like thinking about them doesn’t make them worse.
It’s just… annoying. I don’t know what to do. I’ve been living without answers, or any real help, for years, so that’s nothing new. But it’d be nice to be taken seriously, and maybe not be treated like I’m attention-seeking by medical professionals.