Yesterday was my appointment with Dr. A (who, now that I have seen his name in writing should be Dr.E but I am too lazy right now to change that) for an evaluation to obtain his expert insights into the movement disorder aspects of the mystery that has become my life. Once again I am incredibly thankful for a doctor who does not believe that MD represents Medical Deity and who realizes that, as the person trapped inside this body, I have a valuable perspective. He had me perform the wide range of neurological party tricks, most of which I suck at (note to self - if I ever drive again and am stopped for suspicion of drunk driving, I am totally screwed). That whole pointer finger to the nose thing looks so easy until I try to do it without my arm muscles shaking. And it sounds so simple to hold my leg up and not let him push it down, until with two fingers he slams my leg down over and over. Talk about ego bruising...a year ago I was able to pick up, carry, position and provide support for children with severe disabilities who weighted up to or even more than 50lbs.
So after his evaluation, he discussed his findings with me. Dr. A is certain that this is not a primary movement disorder like a primary dystonia or parkinsons. He is also certain that it is complex, complicated, and rare. His words "were you to present to us without any medical history and just your current symptoms, this would be a very complicated and difficult case. When you add in your history and the dysautonomia...". I saved him at this point and explained "I never seem to do anything simple. It is always rare, complicated, and an extreme challenge. Apparently it is against my genetic capabilities to follow a simple textbook anything." He laughed, but also agreed. So now that we know what it isn't, we are left with more questions. His opinion is that it is most likely something impacting my spinal cord given the presentation with my lower extremities, and he is concerned because I do indeed have increasing spasticity and tone in my upper back/shoulders which means that it is worsening. He mentioned a disorder called "stiff person syndrome" that they will be checking for by blood work, and also said he is concerned that the autoimmune disorder I was diagnosed with at 11 (and that has been greatly debated since then) could be attacking my spinal cord. He wants me to have a spinal tap, which is tricky given the fact that I am on blood thinners but actually better to do with me on the injections of lovenox than if I were taking coumadin. I have had a spinal tap before, about 9 years ago, and based on that horrid experience in which they missed and then ended up twisting the needle and as a result of their errors I ended up bleeding into the base of my spine I am going to agree only upon the condition of being unconscious. I can deal with the pain, but I find that adding unnecessary pain to an already painful life is unnecessary. Dr. A is now going to be a part of my neurology team, with Dr.CH as lead neurologist and Dr. SN as consult.
One huge success from yesterday was that I received an order for a new wheelchair. The one I have been using is a rent-a-chair that has horrible positioning and actually causes severe pain if I use it for more than an hour or two at a time. Part of this is because of my hip positioning in it, but mostly it is because I have occult spina bifida (the bones at the base of my spine are malformed) and the defect is a boney protrusion just below the layer of skin that receives pressure whenever I sit upright. I have not developed an actual open sore, but I have developed inflammation and scabs on this area from sitting. And as a result of the spina bifida, I have significant arthritis in my lower spine which also makes sitting on a poorly supported and cushioned surface painful. So yesterday after my appointment I went to the medical supply store and ordered a lightweight tilt in space manual wheelchair that could be here as early as Friday :) I had to call and have the Dr. fax them with detailed information regarding seating and/or cushions for seating but it should be taken care of as I have not received a call otherwise. New wheels!!! But to be completely honest, it was hard to order the wheelchair because as long as I was using a rented chair it left me with the illusion that I was only using it on a very temporary basis. Now that a wheelchair has been ordered and purchased for my personal use, it feels almost like surrendering a battle to this and admitting that no one things I am going to walk again any time soon if ever. That is hard, and it hurts. I am not giving up, but sometimes being hit in the face with reality is rough. So instead, I am going to figure out a way to make my new chair absolutely awesome - pimp my wheelchair anyone? :)