Re: Clinical loss of left sided sensation and feeling scared
I can't seem to win with this. Yesterday I had a massive "relapse" of the symptoms. They came on suddenly, from head to toe on my left side while I was in the garden. Tingling and weakness. Along with that I had awful stabbing pains in my face and head. It really knocked me back a few paces mentally. Not anxiety, just feeling so mentally drained, and honestly, a bit sorry for myself. I start feeling like I'm a huge burden on my loved ones, because when this happens, I genuinely can't function. My energy levels crash to rock bottom, migraines take me out for days, this weird tingling happens, my heart goes wonky, and before I know it, a week has passed before I start feeling human again. I'm really struggling with the thoughts that I am letting everyone down, and it's genuinely not coming from a psychosomatic place. These symptoms are real, confirmed by doctors, but they have no answer.
Today I still feel the tingling, but more muffled, left side of face, left hand and left foot. I'm clumsy today and my left eyelid and eye feels so, so tired. In the mirror, things look perfectly fine, nothing is drooping (except my boobs!) and I don't seem to be losing strength. My left hand does get a mild tremor though. My fiancé said I seem different after it happens. I don't even have to say anything, he just see's me and knows something is wrong.
I'm trying not to make too many connections, but it seems like this thing happens a day or so after I get really bad ectopic heartbeats. I get the huge sinking feeling in my chest, gasp for air, and feel the pause for 3-4 seconds. When I was a teenager my family doc said she heard a murmur in my heart on three separate occasions and told me to check on it in the future if I ever felt weak or dizzy. Nothing was ever heard since then, but I've only ever had ECG's done. Somebody in a group for hypermobility disorders said she had stroke like symptoms like mine and it turned out her heart was sending little bubbles or mini clots up into her brain and she was having multiple TIA's for months. It was just a tiny little flap in her heart valve letting stuff leak, caused by her faulty collagen, and it was a pretty easy repair. Not saying it's what I have, but I'm starting to wonder if I need to push for something more, or just accept this as something weird that my body does.
I don't want to waste the NHS resources, but I'm also concerned they've given up on this. Do I just keep trucking, or do I actually need them to look into this more?
Edit: I still have a neuro appointment coming up sometime in the near-ish future. I suppose I'll just hold on till then. I'm just so exhausted by this. Any new doctor or specialist I see never has any account of my medical history, and I end up retelling everything over and over again and nothing gets followed up on unless I push for it. It's the only way I found out I was extremely low in folate and vitamin D and borderline b12 deficient and had inflammation markers. Most of which of which I have been addressing myself, and paying privately for follow up blood tests to check my levels are normal as my GP is far too overwhelmed to follow up on these things.
Last edited by WorryRaptor; 12-05-22 at 16:59.
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