Yes, I spent Easter in the hospital and I still am not 100% sure what happened. I have a few theories supported by my blood work but like always my most concerning symptom-loss of use of my legs/arms for several hours was completely ignored.
I am going to try to explain what happened.
Prior to this I was fighting two infections. I had both a bacterial sinus infection and a secondary fungal infection. ME patients have compromised immune systems similar to but not quite the same as AIDS patients.
I get infections requiring anti-biotics about 4-6 times a year and have for decades. No one cares. I mean this literally . Doctors do not give a shit. I have asked so many times for blood tests to test my immune system but because I have ME and almost no one believes it is a physiological illness (despite evidence of this spanning at least 50 years) I get no investigations. Drs just scratch their heads with my abnormal CBC and nothing is ever investigated.
High platelets (for decades), high wbc, sometimes high red cells and so many other abnormalities (some come and go like WBC are only elevated half the time. Platelets almost always elevated except this recent test and I will get into that later. Elevated hemoglobin etc are more rare about 10% of the time).
When you have ME negative test results mean "nothing is wrong" positive test results mean the same. Make it make sense.
Long story short my drs office (not the dr himself. I have since spoken to him about this and he did say he would make sure this doesn't happen again) refused to let me book a telehealth consult when my thrush started. This was the most aggressive thrush I have ever had and was so painful-imagine thousands of paper cuts in your mouth and throat. It was so bad my lips were swollen.
The dr office staff loves to shame me for being a mostly telehealth patient and insisted I need to be seen i person to get treatment . Keep in mind this office has prescribed anti fungals even prophylactic (before infection/to prevent infection) for me countless times and this was basically a refill request. It have had his medicine prescribed through telehelath by this office in the past. But the office manager was on a power trip and outright denied me care because of my disabilities. This is a federal crime.
I had to order anti fungals through a fish supply online store. I could not get the liquid lidocaine though. This meant I went days without food (too much pain). I could barely drink water and was not drinking enough. I could not ingest my electrolyte drinks which I need every day to keep my blood volume up.
Had the dr office not refused to treat I would not have ended up in the hospital. My dr was very upset when hearing about this and admitted there were issues with his staff and has promised to make sure nothing like this happens again.
Fast forward several days later and suddenly out of nowhere my HR spiked while I was laying in bed . It hit about 170 and was not going down. My 02 dropped and stayed in the 80's for at least 20 minutes. I felt very disconnected. I had essentially completely disassociated (I did not tell anyone at the hospital this for fear they would see me a a psych patient). I was having syncope symptoms and starting to lose felling and the use of my legs and arms.
Since I was so disconnected (like watching a tv show of my own life) and my HR and 02 were not improving despite supplementing oxygen I told my husband I needed to go to the hospital and I was not really connected to anything and fear I may become unresponsive. My HR and blood pressure where alternating between being really high, crashing for a few moments then really high again. I can only describe this as autonomic failure . I mean like going from 170 BPM to 50, then back up to 160 within seconds. That is not anxiety.
He called an ambulance . I could not walk because I couldn't feel my legs. they felt like I have novocain but also a severe burning pain.
This sensation does happen often when I am in syncope/near syncope so it wasn't too concerning for me at that time. Yes losing feeling in my limbs is so normalized to me it really wasn't a concern at the time. I realize most people would be panicked at this.
My husband said I did lose consciousness a few times but I don't remember (common in pre syncope events)
When the EMTs got there they were awful. They assumed I was having some kind of anxiety episode and kept insisting I walk out to the ambulance. I was not anxious. I was completely disassociated. In fact I felt less emotions than I do when watching tv/movies. I really was outside my body . I am not sure how else to describe this. Similar to an out of body experience those who are near death(or those experiencing trauma) experience but this lasted for hours. Maybe that's normal?
My husband explained to them right away that I have POTS and cannot be upright. I also couldn't feel my legs so there's that. They did not believe me even though this is a very common syncope/near syncope symptom(especially when one is close to or has fainted). After arguing with me for 5 minutes and trying to get me to walk (I did try but couldn't) they finally brought in the stretcher (the whole reason we called them in the first place)
My husband was not allowed to go with me in the ambulance. They took forever to leave and bring me to the hospital . My husband said they took 15+minutes to leave . They weren't really doing anything when I was in the ambulance except repeatedly asking if I have a history of anxiety. I finally did get some IV saline and was hooked up to a heart monitor. Finally they brought me to the hospital but like I said it took over 15 minutes. Since my 02 was hovering in the 80's but went to 90 a couple of times I was not given oxygen. WTF?
They also took their time getting me out of the ambulance as well. After about 20 minutes of having the IV in my HR went down to the 130's. I was still in the ambulance (the hospital is 10 minutes away from my home)
The EMT basically said "see you just needed fluids and are getting better already. Now I need you to get up and walk with us into the ER".
Um what? I told them so many times I can't feel my legs or body except a burning sensation(numbness in limbs is common in syncope but burning sensations are not. At least for me). I did not feel the IV going in and usually for me that is painful because I have difficult veins.
I told him I do not feel better and feel really nauseous . I said I can't sit up or walk. He then sat me up (to get me to walk)against my will.I couldn't resist him because I couldn't really feel my body. He was also a big strong man and I probably couldn't resist him regardless.
I then proceed to projectile vomit everywhere. I could not control it al all. It really was like a horror movie where someone is possessed.He then yelled at me for not using the bag. Remember I basically can't feel much of anything from the head down and couldn't hold the bag because I couldn't feel my hands.
Side note: I did tell them before this that I felt like I was gonna be sick. They did not listen. Hopefully having to clean up the mess taught them a lesson.
I will pause the story here and write a part two soon.
Spoiler alert:If you were hoping the doctors and nurses at the hospital treated me with the urgency of care I needed -it took over 4 hours for me to get nausea meds . I was left covered in my own vomit the entire time I was there.
Fun times
My husband was not allowed in the ambulance with me