I have had a very typical MS presentation but am termed after 20 years "very complicated" as my myoclonus has been very bad and spinal tap (with very highly elevated igg synthesis and index) didn't even show until 10 years followed by Oligoclonal Bands showing at 15 years time (which I realize doesn't mean they weren't there before)... Original Diagnosis 1993 made via SSEPs delayed in 2 sep. locations and the attacks over time and space at renowned MS center.... followed by 10 years of off and on not so major attacks (on Betaseron) - Diagnosis pulled in year 7 due to finding of a syrinx but new neurologist where I had moved said that had nothing to do with prior Optic neuritis (on scans), and SSEP showing delays above syrinx so with major attack and 10 year LP showing elevated igg plus many brain lesions based on MRI he ran in 2000, re diagnosed and on Copaxone.
With that Dr. another 6 years, developed terrible myoclonus and he felt all spinal related.. Oddly - hope you'll bear with me - MRA done in 2000 (when I had attack) of Neck arteries (COW) showed moderate stenosis of proximal right ICA. Predominance of basilar artery flow appears to be supplied by left vertebral with smalll right vertebral contribution - tortuosity of high left cervial ICA and Also found Atherosclerotic plaque/narrowing suspected of proximal ICA's bilaterally, probably not hemo.. significant on left but of moderate severity on right. Correllation with duplex ultrasound might be considered to exclude atrifactual apparent narrowing, especially in the right ICA.
I think an ICA is an Intra Cranial Artery? Is that even right? The COW results talk about tortuosity again but says unremarkable.
What is truly remarkable is that when I needed to move to a new city, my Neuro reran the 2000 MRI, this was 2006 and lo and behold, no lesions showed... This was a more modern machine but he stated he was an expert on MS (which he was) and anyone who saw all my facts, should treat me as such. Well, that didn't exactly happen. I also found out right before moving as I had a DVT in my leg extending the whole length and I had physical therapy the day before so it wasn't from being sedentary. Turns out I have Factor V Leiden which is a blood mutation making me more susceptible.
So I move here and at first good neurologist but then I have one who missed the Oligoclonal bands and termed me psychogenic (without telling me)... I finally have all my records and a neurologist who confirmed the complexity of my case and is calling my disease at this point "Demyelinating Disease"... as the brain MRI continues to be clean although she acknowleges my damage, i.e., drop foot, plus mild myoclonus and very bad ataxia.
I checked my last Thoracic MRI and will ask her about this next time but the syrinx has basically shrunk however; there is a new anomoly (actually this is 2 years old but I'm asking due to the vascular nature. It states There is mild linear enhancement along the ventral aspect of the inferior spinal cord which appears to be vascular in etiology and is of uncertain clinical significance".
This MRI was done while with the Neurologist who deemed me psygogenic and the brain MRI although only having one demyelinating plaque had something every one of my brain MRI's has which is a reference to "slow flow or hypoplasia of the right vertebral artery"
I have also had another DVT and Pulmonary Embolism and looked at the FAQ's and description of this new way of diagnosing MS and saw how they likened it to these things that happen in the legs and I have that pique-ing all over my ankles as the flow of blood is now as explained to me " the vessels cannot find the same route or blood supply" now I have these incredible browish reddish ankles...
I really wonder if what I am describing is what they are talking about as I tend to get confused with the terminology (oh by the way, a Neuropsychologist worked with me and declared me to have a memory worse than most PPWMS my age, processing much worse than PPWMS my age and absolutely NO somatization or psychogenic basis although I am depressed which I freely admit.
One thing I haven't found and maybe I haven't looked enough is it seems they have proven this new test proves that all diagnosed people with MS are coming up positive on this test - I wonder about people like me. I am not considered Possible MS or Probable, I am rather considered to have an Idiopathic Demyelinating Disease and I believe she is just waiting for me to have more evidence of lesions...
Would it benefit me to push this issue or am I misunderstanding the types of arteries they are talking about??
I realize this has been long but it has been a long journey for me and I find sometimes incredibly learned people on these boards. Please whatever you do, don't yell at me for a long post. I saw no way to make it shorter. I really just need and wish for some advice...