I followed up with the Neurologist today. If any of you have seizures, I would recommend my neurologist. But if you get more complicated than that... Well, lets just say she was less than receptive to even assessing me, much less helping. My PCP, the best PCP ever, did a better neuro exam than she did... SO I show her my droopy face and did she even assess any of the cranial nerves? Well, no not really. She did have me follow her finger about two inches across, not even enough to move my eyes, much less show her the incessant nystagmus which is so annoying sometimes. She never came near me with a light. Every good practitioner doing a neuro exam knows you cannot test cranial nerves without a light. PERRLA!!! Anyway. She pretty much said I needed to stick with TCI and let them handle it or get in with a neurosurgeon here and have all of them send her their decisions to keep her updated, and to follow up in 3 months... Really?? I am trying to keep my Marionette Puppet joints together to be able to walk, and did she ever even watch me walk?
Do balance tests??? I took that class. This semester. I kicked butt on the neuro exam of a patient, I know what is involved, and it isn't just the brachial, patellar, and achilles reflexes... "I do not want to pursue an EMG study because your reflexes are telling me that your problem is not neuropathic." Really? Wow. Thanks. I am grateful to her for focusing and honing in on the seizures and getting those under control, but highly disappointed that her caring stops there. The good news? Dr. Olney has already found a new neurologist, and this one is fresh out of school with more time and ambition and fresh education and also works with neuromuscular disorders.
My love of investigating the cause and effect, and my natural desire to "put together the puzzle" has kicked in once again. Maybe that is why I love "House" so much. It certainly can't be House's charm and natural ability to woe people... Hahaha. Sometimes I wonder what Hugh Laurie thinks of his character. Does he laugh at his insanely rude and bad people skills, or does he resemble the character ever so slightly? Hahaha. Anyway, I love researching. Always have been great at research papers in school. SO what research have done? Autoimmune disorders and EDS. I wonder if anyone has done any studies on the two and how the play off of each other. For instance, say the muscle weakness and trouble swallowing and droopiness is Myasthenia Gravis. Well, then you have that as the autoimmune effects, causing muscle weakness, which plays with EDS and makes the joints that were once compensated by strong muscles into say Marionette Puppets. Mild EDS = compensated muscles growing up, add in MSG and muscle weakness = joint weakness and clumsiness and increased joint pain and movement = mild joint swelling from all the excess movement = mimics an autoimmune disorder. It comes back full circle. And I know that was about as clear as mud, but so is my brain right about now, so it's all good!
And now, as much as I have fought it, I am seriously considering getting that walker that she wrote for.......
I have so many more thoughts, but my brain will not put them together right now,and it has taken me far to long editing this post for brain errors and insane weak fingers. So I will leave you with a thought.
Imagine looking at your hand and saying with as much might as you have "Move hand, squeeze, twitch, anything" and getting nothing. Imagine it actually feeling heavy, feeling teh weight of every joint, every fiber, every stitch of broken collagen, and it feeling like the weight of a bowling ball. It has only happened a few times, and lasts only moments, maybe a minute at most, but it is an odd feeling.
Goodnight everyone! Tomorrow I will smile, even if it is weak and pissed off looking, it will still be a smile because we are
going to get our Christmas Tree!!! =)
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