Hi Friends,


In my recent introduction, I said that I would use this forum to see if anyone has any experience similar to mine, or can offer any direction/expertise.

I am a late 20s female. I have been struggling with broad spectrum symptoms for several years now. I had to quit my job because of health issues back in 2013 (my doctor, at the time, diagnosed me with chronic migraines and anxiety. She gave me 4 days of FMLA, and I needed more). Shortly after, I was diagnosed with Mono and anemia for the second time in my life and assumed that all the symptoms were related to those.

In the following years, my friends made comments like, "You are always sick." Migraines was a big one, but sudden nausea, loopy feeling, fuzzy vision were common. Near the end of 2014, I noticed dizziness that had reached an unsafe level. I lost my vision, became very disoriented, and tripped skidding my knee and elbow. I'd come to associate these symptoms with Mono, so I asked my doctor to test me again and it came back negative. I asked if I could have a brain scan, and he laughed at me. So, that was the last I asked for doctor's help with the matter until my most recent flare up of symptoms.

Over the course of 2015, people who saw me regularly commented that my life was not a normal healthy life, and I needed to stop ignoring it and find a doctor who would listen. In April of this year, I finally decided to try to see if a doctor could help me. He told me to try going gluten free, and that's when it started spiraling out of control.

After one week of eating gluten free, my legs went numb, I was having coordination issues/gait cycle weakness and I needed a walking stick to walk. My doctor asked me to go to the ER. I thought that was a bit much so I went to urgent care, and they asked me to go to the ER. Once, in the ER, they didn't want me to leave. I got my catscan, MRI's, EKG, and a number of blood tests. I did not pass the release test where you walk to the end of the hall and back, but the doctor let me go home. Over the next few months, my symptoms progressed, but their frequency was really inconsistent. Some days I was pretty normal. Some days I was in danger of needing to go back the ER. We noticed my feet turning blue/purple. So, we bought a blood pressure monitor and noticed that my blood pressure was sometimes very low. My neurologist finished testing, and told me to start the process of going to a place like Mayo when she found nothing.

My GP wanted me to see a cardiologist before going to a research institution. My heart ultrasound was great, but I failed the Tilt Table Test. Both the cardiologist and the cardiac electrophysiologist said that I failed pretty badly. My heart stopped for 5 seconds and my blood pressure dropped very low when I lost consciousness. The cardiac electrophysiologist says that the problem is not my heart, but the nerves surrounding my heart malfunctioning. He was convinced I had MS before he looked at the results from my MRI and lumbar puncture.

As of right now, my cardiologist, cardiac electrophysiologist, and my GP believe my issue is a rare nervous system disorder or something that attacks the nervous system. I have an appointment with a geneticist in October to look into Mitochondrial disease and am going to a university's neurology department. My cardiac electrophysiologist has me wearing a heart monitor because he wants to convince me to get a pacemaker, but, at my age, a pacemaker is dangerous because I will likely need several and the tissue grows around them making them dangerous to remove. Until I get a pacemaker or a diagnosis, I am not allowed to drive.

TL/DR: Here is a a non-comprehensive list of my symptoms. All my symptoms fluctuate daily and sometimes even hourly:

Head:
-Migraines
-Dizzy/lightheaded (this can last days or a few moments)
-Blurry vision/darkened vision/stary vision
-Cognitive Dysfunction (I sometimes can't remember very simple words, difficulty focusing, difficulty forming sentences and having conversations, people describe me as seeming intoxicated during these episodes)
-Loopy/Dreamlike feeling

Core/Body:
-Shakes
-Spasms (sometimes even in heart. This symptom interrupts my sleep the most)
-Nausea (sometimes difficulty eating)
-Hands will lock up and ache
-Pain in my back and chest that spreads outward like the way it felt when they brushed a nerve in my lumbar puncture
-Temperature increases in different sections of my body
-General aches/discomfort
-Minor coordination issues (typically noticeable when trying to eat or hold a pencil)
-Stomach pains
-Difficult swallowing

Legs:
-Feet will turn purple/blue
-Gait cycle weakness/coordination issues (typically need use of walking stick)

Some days I am fine and can wake up and do work, go for walks, hang out with friends (although, these "good days" are still not a normal person's good day). Other days, it is difficult to make it to the bathroom and I need others to take care of me. I can keep anyone updated who is experiencing similar issues if I receive a diagnosis.

Thank you for all your help/support everyone!