My Symptom List (And Yours) and Opinions Needed. Thanks

General
1

Here are my symptoms list. I copied ALL of the symptoms from the Chiari Symptoms page on Mayo Clinic's Website as I suffer from all of them. I was wondering how much of you have all symptoms on the Chiari website or any different symptoms not listed.

My symptoms began in October of 1999 when, earlier, I came down with mono. I then got severe head pain, especially in the back of the head and eyes. I went to the hospital and they found nothing (spinal tap, MRI, CT Scan, blood work - nothing). I have only progressively worsened, though now I have found out I have Postural Orthostatic Tachycardia Syndrome (likely from immobility) and a dislocated TMJ (which I didn't have in 1999). My symptoms are:

  • Constant 24/7 Head, Eye, Ear, Back and Neck pain (running down the shoulders at times)
  • Back of head: I can only lie on my right side. I can't even touch a pillow to the back of my head or my pain increases in my eyes and base of skull leading to a migraine.
  • Anterior dislocation of jaw (left side) with displaced disc.
  • Diagnosed with P.O.T.S. with tachycardia (130bpm) and bradycardia (47bpm)
  • Unsteady gait (problems with balance)
  • Poor hand coordination (fine motor skills)
  • Numbness and tingling of the hands and feet
  • Severe Dizziness
  • Significant memory loss
  • Difficulty swallowing (not often - only recently)
  • Vision problems (blurred or double vision)
  • Slurred speech (I've been asked if I have had a stroke, quite embarrassing)
  • Chest pain, left sided
  • Constant left arm pain
  • Poor bladder control (including constipation)
  • Left side of body is weaker than right side
  • Insomnia (big time)
  • Possible scoliosis
  • Chronic Fatigue (without the possibility of sleep)
  • Concentration issues

I would really appreciate it if someone could look over this and give their opinion. If I do not have Chiari (see my other post), I am wondering if the POTS and stomach issues has been created from being immobile for far too long. However, the base of the skull pain and eye pain are questionable; I had these before any jaw popping or TMJ problems existed. I have no idea if you can have TMJ problems without having popping, etc.

Also, please feel free to share your list of symptoms. Treat it like a competition - lol :D Seriously though, would definitely like to see other symptoms and how everything began for you.

Thanks for reading and see you later.

2

Thank you both for the replies. I really appreciate it. I did not know the size of the herniation wasn't important - I had no clue. I am learning something new everyday. I have no idea who would be considered a Chiari specialist and I doubt I would be able to find one in my area (AZ). Worst yet, I can NOT travel out of state (I cannot even drive). I just feel strongly about looking into this. The least I can do, however, is get this CINE MRI you mentioned. I've read a few others mention it so I will look into it.

Yeah and Dr. Saperstein was very rude. I should've never handed him my research notes. Before handing him them, I specifically told him that they were personal and only theories. Most of my theories have been crossed off the list and one has come true (TMJ). Exploring all areas is extremely important. Being a patient with knowledge must've irritated him. I handed my research to my pain doctor who was very kind about it and really recognized I was trying everything in my power - she complimented me. Sometimes I hate the confusion these doctors create. It's not the doctors that are bad - it's the actual person behind the Phd that is bad as I have learned.

Thanks again for the replies. If anyone else wants to chime in, go right ahead.