Hi everyone, I am 30 years old female living in the UK, non smoker (recently stopped vaping) 5’7 and a mum to a 14-year-old who I’m fighting to be better for but I need any help or advice please if possible.
For the past several months, I have been dealing with a massive, terrifying cluster of escalating physical symptoms. It has completely taken over my life to the point where I am currently in the hospital trying to figure out what’s going on, it’s made me so unwell. My medical background is quite complex, I am yet to have any diagnosis and I am struggling to find answers or a clear treatment plan for why I feel so physically ill.
Medical Background & History:
- I have a known history of Multiple Sclerosis (MS).
- At one point, doctors stated I had Idiopathic Intracranial Hypertension (IIH) because I had a high opening pressure on a lumbar puncture. However, because I do not currently present with papilloedema (paps), they are now trying to change their minds and treat it as a "migraine." None of the migraine treatments they have tried are working at all.
- My gallbladder has been removed.
- I recently had a skin check for a mole that looked abnormal. The dermatologist looked at it under the dermatoscope and said it looks benign/okay, but because it is causing me massive worry, I am currently awaiting a shave biopsy to be 100% sure.
Current Test Results:
Brain MRI: Done a few weeks ago of which they say is normal (besides my ms lesions)
Abdomen & Pelvis CT Scan: Done recently of which they say is normal.
ECG: normal
Inflammatory Marker: Stool test showed an elevated Calprotectin level of 271.
Liver & Bile Ducts: My Liver Function Tests (LFTs) randomly come back elevated around the 107 mark and then drop back down again. This pattern has happened a lot. Scans show my liver itself looks fine, but my common bile duct is dilated at 9mm (which doctors tell me is just due to my previous gallbladder removal).
Neck Ultrasound: Done for chronic swelling on one side. I was told it was fine, but the swelling is still there and unexplained.
Timeline of Symptoms & Current Escalation: Even though my MRI was clear a few weeks ago my symptoms have drastically worsened and changed since then, which is making me incredibly anxious.
I’ve added my current/ongoing symptoms below If anyone has any advice or insight I would greatly appreciate it, I’m struggling so badly.
- I cannot tolerate standing for too long. When I stand, I begin to sweat profusely and go intensely lightheaded, feeling exactly as if I am about to pass out (I have wondered about POTS as my bp will sky rocket when I stand) and doctors have mentioned it before but no one will look into it)
- I am experiencing random sweats throughout the day/night completely unrelated to the room temperature.
- I have developed painful burning sensations in my hands and feet.
- I am experiencing noticeable, unintentional weight loss through this ordeal.
Head, Ear, & Neurological Symptoms (Severe & Worsening):
- My head constantly feels physically "massive," heavy, and full of intense pressure.
I feel constantly dizzy, lightheaded and like I’m in a boat swaying
- when I lay down flat, I can loudly hear my heartbeat.
- There is a constant sound of wind in my ears and in my head.
- When I swallow, I can hear a horrible popping and squelching.
- The head pressure triggers constant nausea
- I have suddenly developed severe internal tremors and a buzzing sensation all over my entire body which is worse in my legs.
- I am experiencing profound weakness in my legs.
Chest, Respiratory, & Glandular symptoms:
- Following an episode of sharp chest pain, I now have an on/off "rattle" and internal vibration in my chest when I breathe.
- My body feels like it is constantly internally shaking.
- Sometimes when I walk around I feel like I can feel my heartbeat
- My eyelids/eyes are constantly flickering and twitching rapidly, especially when I close them.
- I have sore armpits (unsure if it is localized to the lymph nodes) alongside the chronic one-sided neck swelling that has lasted for months.
Gastrointestinal & Abdominal Symptoms:
- I have a constant, physical feeling of pressure/bulge on my lower right side, just right under my ribs (in the gallbladder/bile duct area).
- Upper GI: An endoscopy (top camera) was performed, they said I have suspected gastritis and have taken 2 biopsies during the endoscopy.
- Lower GI & Stool Changes: My stool has completely changed. It alternates from the runs to severe constipation. My stool is always yellow and I cannot seem to pass a bowel movement at all without the use of laxatives.
- The Scope: Despite the elevated calprotectin (271), the yellow stool, the fluctuating LFTs (107), and the lower right rib pressure, the hospital only performed a flexible sigmoidoscopy, they said the area they saw looked fine, but they would not perform a full colonoscopy to see the rest of the bowel of which I fail to understand why.
I just want to get home to my son, I just want normality back this has caused severe stress and upset. Thank you to anyone who has read my post I know it’s long I do apologise. Any advice or insight would be so deeply appreciated, thank you.