Quite a long, unresolved story...

This is my story.

I first noticed any bodily changes around late 2018. Me and my ex partner were drinking quite heavily and we were cheering England on in the World Cup. Around this time my bowel habits changed (greasy, fatty, foul, floating). Plus I was so dizzy once at work my manager let me go home. I didnt know - and still dont - what that was.

This progressed to the point where I lost a bit of weight - not a ungodly amount, so I went to my GP and then was referred onto to a Gastro specialist in Hexham, who said my symptoms were

classic Celiac. Because nobody in my family had Celiac, I was - and still am - sceptical. Ultimately I had the antibody test which was Negative (I was not eating gluten however, yes stupid), I had the genetic HLA testing (HLA DQ2 & HLA DQ8 positive, maybe predisposing me to it later in life), and then finally the dreaded Endoscopy, which only found Duodenitis (Once again I did not eat much gluten). The diagnosis was gluten sensitivity and I was discharged.

I continued to avoid gluten, but my symptoms got worse. They morphed also from basic abdominal discomfort and bloating, to these episodes of intense shivers, massive stool output and more weight loss. I remember once at work, only being there for around 2 hours, I had opened my bowels 5 times before midday, and was left feeling so drained and dehydrated. I nearly passed out at work that day so my boss let me go so I could visit A&E and demand answers. They had none, and discharged me.

This continued and continued. Some days I was good, some days not so good. I gave up drinking completely (still T total) and stopped socialising as much because of the uncertainty around what the hell this was. High stool output, weight loss, some shivers, confusion-like episodes (severe dizziness and disorientation) and just vague malaise ensued.

I did not go abroad or eat any crazy foods nor did I run through fields and lie in the grass for hours on end (Lyme Disease and other tick-borne critters). Well before this, my ex and I bought a lovely little week old kitten. She was feisty and would often bite me and scratch me (Its what cats do, right?). She slowly grew up and at one point, was very badly ill with bloody diaorrhea, worms crawling around and a massive flea infestation. One day I actually remember being up early for work, and finding a long tapeworm, dead and dried up on our worktop.

Around this time is vaguely when I remember having Celiac screening. I dont remember vomitting, or fevers, virus like symptoms or any rashes. What I do remember is feeling generally unwell quite a bit, tired, dizzy and I would often find swollen lumps under my armpit. I passed them off as ingrowing hairs.

My fatigue, dizziness and brain fog got worse until one day at work, I was quite severly confused. I would pick up something at work, turn around and for a split second I wouldnt know where I was - almost as though turning around and shutting and opening my eyes reset my spatial memory, proprioception and bodily awareness.

One episode was quite scary. My ex left work at night. I sat on the couch and started getting this horrible nerve like pain in my hand. Then I came over all.. shivery, cold, clammy and mildly confused. I rushed round to my grans who made me tea and it eased off. This is when me and my ex broke up, I moved out and moved back in with my gran.

I hoped that moving away would eradicate my symptoms but it didnt. They got worse. They gradually, and vaguely progressed until around mid 2019, when it went from having chills here and there to chills every night. Where it went from feeling cold to rushing to A&E with my Mum because I went into temporary hypothermia (34 degrees, shallow breathing and confused=scary). It went from me having good days and bad days to every day being hard work at my job, short of breath and soooo tired - unusually so.

I went to my GP and explained my symptoms. I got a few funny looks when I mentioned confusion. All manner of tests were ordered. Vitamin and minerals, urea & electrolytes, full blood counts, etc. They all came back relatively ok, apart from me having consistently low Lymphocytes, and the night I went to A&E, my white cell and Neutrophils were raised.

Fast forward to just before Christmas 2019 and I had lost a lot of weight (10 stone 7 to 8 stone 10) and had developed some pretty nasty symptoms ; vague hand tremors, bodily twitches, nerve zaps in my head and neck, chills were more ferocious and the dizziness just did not budge. Oh and nausea appeared early 2020, which was horrific. Almost as though every two minutes I thought I would throw up.

During this time I got utterly obsessed with visiting A&E to try to get answers - they were utterly useless, as the most they did was put me on a drip and send me home with Buccastem for vertigo and passed it off as Menieres.

At this point my mental health detoriated quite badly, I remember hitching a ride to Hexham off a family friend to try to get answers, only to find a village doctor (just one) in urgen care was so laid back and Doc Martin-like it was silly, so I hopped on a bus to the RVI in Newcastle for answers. They took my bloods, poo and pee and said because I was a) far from home and b) my immediate bloods were 'fine', they discharged me... infuriating. I did not want to leave to I trailed around Newcastle until the early hours and then re-appeared with claims of vomiting so they would see me and solve this mystery, they discharged me. I was not only worried and obssesed about my physical state, I was beginning to act a bit.. manic, erratic and dazed.

Around this time I started a new job, and they sought me unfit for work because of how I looked, felt and was generally - but kept the job open for me in future. Heartbreaking. I cried alot

Fast forward to now and I have severe dizziness, nerve pains in my head and neck, horrible neck, back, frontal muscle aches, general malaise and uneasiness (almost as though something is crawling in me) and a whole host of other symptoms, like personality changes and depression and panic attacks and autonomic dysfunction etc etc. Oh and my hands are very blotchy.

I have had two brains MRI's, a CT on my kidneys and a frontal CT. The last CT found nothing bar a calcified granuloma in my liver, which in itself isnt an issue to me, but is a sign that my body has tried - and failed - to kill an invader and its become calcified over time. I am adamant the invder is stil here, an unwanted guest, acting shady and mysterious and sapping my energy and thieving my need for energy and new cell creation.

Now I am pushing GP's who are painfully 'general' to a fault, and wish they would stop wanting to pin it on anxiety (dont ever tell a doc youre anxious!), A&E are under-resourced and basic, CHOC (Minor Injuries at Hospital) are powerless and void of any meaning and my specialist is a very, very busy man - all while I am sat here wondering if this is Lymphoma, Toxoplasmosis, Bartonella / CSD, Lyme, a brain tumour that hasnt been spotted or something else - whether worse or 'better'.

I have collapsed once already and woke up severly dizzy, confused and felt abit in shock.

I hope that this story doesnt end with me collapsing in a heap amidst family members screaming 'oh what a shock' because to me it just would not be.

I hope I get an answer soon because whatever this is will not stop until it kills me - it feels like it anyway.

To be continued.

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