I was diagnosed with PPMS in 2003, although that diagnosis has been called into question, because I have only significant one lesion at the very top of my spine (the cervicomedullary junction-I have another small lesion in the right periventricular region of my brain, but this has been deemed by all who have examined me to be completely insignificant.), and my spinal fluid has always been clear of any signs of inflammation, immune activity, or O-bands. My lesion has not changed in presentation since the day I was diagnosed; an MRI taken seven years ago looks exactly like an MRI taken today. My MS neuro says it's atypical PPMS, the National Institutes of Health say it's not MS, but can't pinpoint what else my disease might be.
Having said that, for approximately the first five and half years of my illness, my right side bore the full brunt of the disease. Both arm and leg slowly weakened, to the point that today they are for all intents and purposes useless. About 18 months ago, my left side started to feel the effects of the illness, and now is getting considerably weaker, less coordinated, and is displaying sensory issues (numbness and tingling).
I underwent an attempted liberation procedure in March, which found that I have a major blockage in my right internal jugular vein, which was unable to be opened via angioplasty. At first this blockage was believed to be a malformed valve, but now, after Doppler sonogram, it looks like it's a muscle bundle that is pinching the vein nearly closed. No consensus yet on how to fix this, it will either require a stent, or more likely, traditional surgery.
My venogram also revealed suspected issues with my azygos, but these also were unable to be addressed (the catheter couldn't reach the location of the problem).
Last edited by marcstck
on Sun Aug 15, 2010 4:31 pm, edited 1 time in total.