Continuing the insanely long post:
My knees have been a huge problem for me especially starting in my teens. I used to work at a Target store and my coworkers constantly pointed out how my knees were always popping, cracking, and grinding. One coworker said that it sounded exactly like her knees and those of her family and they all have arthritis. I started poking around looking for info about that and I fit the descriptions for arthritis quite well. It has continued to progress to the point that I can’t do many things. There can be an almost constant joint pain with random flare ups with various symptoms. Sometimes excruciating pain, sometimes a warm, burning sensation, etc.
I have had sleep issues either for years. I don’t even know when it started. I can say that for the past several years, I never feel rested even if I was unconscious for several hours. I have terrible insomnia where the idea of being unconscious for several hours is laughable now. I’m a very light sleeper. I can feel completely wiped out and my mind will not be racing or anything like that and my body will just not go to sleep.
I have had horrific stomach issues. Every single day I have had horrible acid issues. And with a past with anxiety and nausea/vomiting, there is a scary amount of acid that has come up my esophagus. It has even gone up into my sinuses and, if anyone else has had that, you know it is awful. You feel the acid burning your tissue and you can’t do anything to stop it. I did a 4 month stint on Nexium that ended a couple months ago and it was great at first. But instead of the burning throughout the day and night, I ended up having what I describe as acid coughing. I would snap up at night with a sudden horrific cough and it felt like acid was spraying my throat. It ended up happening every single night so I stopped Nexium. Turns out I made the mistake of not weaning off of it so I had unbelievably bad rebound acid. Side note: I tried the combination of Zantac and Zyrtec for the first time last night and I had the best night sleep I’ve had in several months if not longer.
I have an appointment at the end of the month to see a Gastroenterologist to check what condition my esophagus is in after all of these years of acid.
The Driscoll Theory (thank you Dr. Driscoll!!) has been an amazing find that I have only just started learning about. Because in addition to a loooong list of other issues, I have what I believe is pressure on my brain. It’s exactly what it feels like. I have the constant pain and pressure in the back of my head. If I lean my head on something or at a bad angle the pain and pressure shoot up. If I lay down flat, sometimes I am immediately overcome with excruciating pain in my head that becomes a migraine and does not go away as soon as I get back up. It takes awhile to fade. I have had a few instances of clear fluid coming out of my nose that didn’t seem to be nasal drainage but I dismissed it as such anyway. That might still be the case but I am curious about spinal fluid now.
Uh let’s see. My brain is getting foggy and I don’t want to forget anything. Um, lifelong random heart palpitations. Chemical sensitivity that causes horrible coughing and nausea. light and noise sensitivity that has gotten worse within the past two years as well as sudden intense motion sickness. Migraines, ice pick headaches, pins and needles feeling in my extremities. My legs and arms can very easily go numb now. My feet can turn red and purple and I also get livedo reticularis. I never really get sick but I had a cold for an entire month last fall and that seemed to trigger another decline. I have to use a cane for balance now and I am extremely weak and fatigued all the time.
I have Essential Tremor that mainly affects my right hand but now also affects my head and other random things. There was a shaking in my legs that I thought was possibly connected to ET but I learned just yesterday that it fits clonus. I had a Tilt Table Test that was completely normal but when I got up off of the table, my body was shaking and the nurse grabbed me to make sure I didn’t fall to the floor. The first thing out of her mouth was to ask if I have MS. Unfortunately MS seems to be more and likely now as well.
Before I forget, I have had tons of bloodwork which all came back supposedly “normal.” I had a brain MRI which I was told was normal and I got copies of it but don’t know what I am looking at. My doctor originally suspected Mitochondrial Myopathy and Muscular Dystrophy. The bloodwork for that was also uneventful. At my last appointment, I brought up EDS and POTS so I had the Tilt Table and now I am in line to see a neurologist familiar with autonomic dysfunction as well as a geneticist who has experience with EDS. I saw a neurologist in January who completely dismissed me saying it was all Anxiety and then basically accused me that if I tried to get a second opinion then I would be one of those patients who hops from doctor to doctor until I “hear what I want to hear.” And I knew way more about Essential Tremor than him which doesn’t help my confidence in him and I was having difficulty walking right in front of his face and he didn’t care.
So I am doing the best I can to gather info but I feel a bit overwhelmed with not knowing exactly what to ask and what to look for. Especially since a lot of doctors might not be well-verse in these things. I know there are so many more symptoms that I am not listing right now and I thank everyone who has even made it this far. Thank you so much for your patience. And to Dr. Driscoll, thank you so much for your hard work and all of the information you put out there. Your videos have been wonderful and have helped me connect the dots to what I knew was going on.
I have no idea if these posts made sense. I’m concerned about EDS, Dysautonomia, Mast Cell issues, cranial pressure, etc. Do you guys think I’m on the right track? How do I help doctors help me?