Hi folks. I’m not sure if I’m in the right community to post this as I’ve just joined today and am still learning. I also apologise if this is lengthy, but I’ve found myself feeling quite desperate for help and/or advice.
Back in 2018 I’d been experiencing a strange pain in my left foot (mainly in the heel) that gradually got worse and made it difficult to walk comfortably on days out. In November 2018, I had been doing some stretches on my foot for a few days which resulted in some nerve-like pains. One night in November I was comfortably watching a film when I started getting sharp pain in my foot and then a sharp pain in my head and eyes, which prompted me to try and go to bed.
Well, as the night went on, I ended up with crazy tingling in my hands and feet, constant urination, sudden onset diarrhoea, awful headache, tingling on right cheek of my face, a tremor, sudden exhaustion, a very rapid heart beat that I could hear in my ears and nausea.
I was taken to hospital and had my arms & legs examined as well as my reactions, co-ordination etc. I think I done okay but I was stiff and in pain. I was out of area at my parents hometown and the doctor couldn’t d anything for me, said I should see a neurologist and I was sent home none the wiser.
After a long night in the hospital I slept for a couple hours but boyfriend woke me up worried as I was shaking in my sleep. When I woke, I had another awful sudden flare up of all those symptoms, went very pale and this one resulted in me vomiting. He drove me straight back to London and I had an urgent appointment with my doctor who sent me straight to hospital as she was concerned about my resting heart rate of 140bpm and could clearly see I was very unwell.
I had 2 ECG’s, apparently things came back normal except for the raised heart. I was kept overnight on a drip and given multiple blood tests, all of which apparently came back normal however I have not seen the results myself. Doctor was convinced it was B12 deficiency as I am vegan but she said everything came back normal and seemed surprised by that. I was given a neurologist appointment for February 5th 2018.
After my hospital release I spent weeks bed bound exhausted, with mild but uncomfortable and unpleasant symptoms. I would have nights with frequent urination that scared me. I could barely eat. After weeks of trying to recover from whatever happened, I gradually felt better and better and found myself feeling back to normal again - I started getting out of bed at normal times, doing daily tasks, eating dinner and even going out to exercise again.
I thought that meant everything was fixed and that I’d perhaps come down with an illness until this month. About a week and a half ago, maybe 2 weeks, the tingling in my hands and feet came back. I lost my appetite. I developed ear pains, ringing in my ear, an unusual sensation on the roof of my mouth, my tongue had cracked a bit and developed some strange bumps and was constantly dry and covered in bacteria, I developed awful abdominal cramping in different places, my bowel movements changed (stools are loose, stringy, colour changes a lot, no immediate sudden diarrhoea but close), the tingling has sometimes spread up my arms and legs (the tingling in my hands and feet have actually been with me constantly this time), a feeling of pressure in my head, tingling on my head, a painful tight chest that radiates through to my back, an unusually irregular heart beat (it skips beats for ages and feels like a thump in my head) and after losing my appetite again have quickly lost weight which is unusual for me as I struggle to lose weight.
I’ve pushed through in hopes I can make it to the neurologist appointment with no problems but had another attack of my symptoms last night that worsened enough for me to feel like it was similar to the one that happened in November last year. I’m at home constantly at the moment because going out feels like too much when I have these symptoms and I also find it physically tiring. I made it through last night without any severe changes in my symptoms this morning - they feel how they’ve felt for the past couple weeks again. A burning feeling in my chest throigh to my back and the tingling are driving me crazy the most.
I just want to know if anybody has any idea what could be going on here. This has been a distressing experience and my life feels changed after that night in November. Seeing the look of helplessness on my doctors face worried me too, but I’m trying to remain hopeful that things aren’t going to be like this forever. I’ve been trying to eat fruit but the weight loss is a concern too. Had some broth last night.
Wondering how I will make it to the February appointment as at times I genuinely feel like I’m dying. This lack of control over my body, the way it feels like everything under my skin is racing/vibrating even when I’m completely relaxed... it’s so unpleasant.
Thank you to anybody who takes the time to read this & replies. Feeling quite desperate for some support.
