Long over-due update

I always thought I was a strong person.... and then my symtoms started to get the better of me.   I don't like to refer to myself in the past tense, but that is what I do now when I refer to my "old" life.

I was an avid bike rider, riding up to 30 miles a day on my bike around town.  I loved kayaking, hiking, snowshoeing and anything outdoors.  You couldn't keep me in the house!

My symptoms started around the time after I had surgery to repair a crushed clavicle with right arm symptoms that I attributed to my accident and surgery.  These symptoms never really went away and only seemed to intensify and now I have a constellation of symptoms that seems to never go away.

I have been to over 30 doctors for my condition and I am warned by my PCP (who I feel is clueless) that if I keep going to doctors, I will find someone willing to operate on me and possibly make me worse.  What I am doing is looking for the doctor who is going to tell me what is causing my symptoms and what I can do to help myself.   I ALREADY know what it is... the CM and SM of course.. but no one wants to tell me straight out that either of these is causing any issues..... this condition is so rare that many doctors are clueless.  Of course, leave it to me to get something off the wall like this!!!!

I have a very difficult time walking, standing, wearing socks and shoes.  My feet and legs are very painful along with horrible muscle spasms and spasticity.  I would think I had MS with these crazy things, but I was assured that I do not... at this time, I am unsure if I believe that.

My syrinx (syringomyelia) runs from about C4 to the end of my spinal cord and varies in width from 4 mm to 2 mm.  My brain herniation is about 3 mm (Arnold-Chiari) at this time as diagnosed from the specialists in NY, at The Chiari Institute.  I am deeply disappointed in this facility and I don't recommend them at this point.  However they have helped thousands of patients (to the best of my knowledge, at least they say they have) and I'm not going to say anymore than that.

I also have degenerative disc disease in my entire spinal cord.. which is a huge shock to me.  I was also told that I have a Tarlov cyst at C7-T1, which will be evaluated when I go to Tufts in Boston at the end of September.

I am really excited about this upcoming trip to Boston....I have got my fingers crossed that they will be able to help me.

Currently I have episodes of dizziness so severe that I can't get off the couch and nausea to the point that I am not eating very well, yet the medicine I am on seems to be causing me to gain weight..... which if I was healthy, I would not be on any medication... so this just adds insult to injury.

I have an appointment today with a neurologist so I'm bringing my symptom list and my MRI reports from last year to see what he has to say about it.

I will do better at keeping updated, but my main blog is on myspace.