Hello. I wasn’t sure if I should even post here, since I haven’t been diagnosed with anything yet.
About a year ago, I started having loss of sensitivity in my fingertips and toes. Since then, it has spread to my entire body. I’ve probably lost around 80% of my sense of touch everywhere, including parts I’d really rather not lose sensation in. It has affected other things too, like my sense of taste. I can no longer taste sweetness or spiciness.
I don’t have toilet urgency until I really need to go. Nothing bad has happened so far, but it’s worrying. My sense of temperature is also inconsistent. I’ve had to turn my shower five notches hotter for it to feel the same; otherwise, it legitimately feels cold. Touch is sometimes painful; my partner will lightly touch me while shifting in bed, and it’s enough to make me wince. There are other issues as well that I don’t remember.
I’ve been trying to get diagnosed for the whole year, and it has been incredibly slow. I’ve had two MRIs, one brain scan and one spine scan. The brain scan didn’t show anything. I still haven’t heard back about the spine scan because, apparently, waiting over a month to get the MRI and then another month to get the results is normal in the UK, even for an urgent case.
Two months ago, I also started having abdominal pain bad enough to keep me up at night. They tried antacids, which did nothing. Then they prescribed amitriptyline, which is the only reason I’ve been able to sleep at all, though I still don’t sleep well. They tested my blood and stool samples. The first stool sample suggested possible inflammation, so they wanted a repeat. I did the repeat, but I still haven’t heard back about that either. I ran out of painkillers and had to spend last night without them, and will have to spend tonight without them as well, since the refill arrives tomorrow.
Then, two weeks ago, I started having shortness of breath and episodes of being winded, lightheaded, and experiencing heart palpitations even while sitting still. This has been getting worse. The episodes are becoming more frequent, and my ability to do anything is diminishing quickly. Alongside the breathing issues, I’ve been getting random stabbing pains in my sides, chest, and sometimes my back, plus a constant slight pressure on my chest.
I eventually went to A&E. They took bloods, did an ECG, checked my blood pressure, and listened with a stethoscope. They found nothing. They emailed my GP requesting a 24-hour monitor in case any heart issues only show up during an episode, but of course, I haven’t been contacted about that either.
Also, the neurologist suspects whatever I have is functional. So I don’t know whether everything is related or not, but it seems like too much of a coincidence for it not to be.
I’m going to contact both neurology and my GP to ask what is going on. This last year has been terrible for my physical and mental health, worsened by countless stressors and frustrating changes. The only positive thing recently is that I finally, after two years of putting it off, got diagnosed with ADHD combined type. I’m hopeful the help I get for that will make things at least a little easier.
Please excuse the rant, I just felt the need to express my frustration to a community that might understand me at least a little bit.