Marie's PCP read Zamboni and said "OMG this is IT," that gives me freakin goose bumps.
My situation: 45 yrs old, minor right-sided weakness and bladder issues, probably have to start IC in a few months. Symptoms started 2 yrs ago. MRI is clear, except for narrow syringomyelia T7-T9. Spinal tap says MS. Haven't been to a specialist so I haven't been diagnosed but I think it's very likely to be PPMS. I don't have issues with heat as much, but cold weather or stress cause my legs, mainly right to stiffen up bad.
I didn't care to get diagnosed because it's apparently not treatable anyway so why bother. Now there may be a reason to bother. My PCP seems to be open minded and my neuro does also. Since I don't have an MS specialist yet, but neuro thinks I should see one, I was thinking I should wait and see if one surfaces in the U.S. that is open to Zamboni. Based on what I've read here that may be a pipe dream for a while.
If anyone hears of a good MS specialist in NYC (or anywhere U.S. really) who is interested in the work of Zamboni, Dake, et al. please let me know. I would rather get diagnosed by that guy if it turns out I have MS. As much as I'd like to run off to Stanford ASAP, that seems crazy without an official diagnosis first. Problem is, based on my level of symptoms and lack of MRI evidence, I could see it being years before MS would be diagnosed. If Zamboni has found "it" or a big part of it, I'm not going to sit around and wait for the macdonald criteria or whatever to tell me it's okay to get a stent in my veins. I'd like my bladder back now.
TIMS advice greatly appreciated.