I forgot to add that you can still stay on all of your MS drugs while in the clinical trial because it's not a trial for MS per se. It's a vascular trial to see what happens if you fix stenosis using stents in the veins.
CureIous wrote:So how do you feel about seeing all of that and the consult? I know your head is spinning with all the new info, but now that the black/white is right there, does it "feel" more real??? Can you sense the light at the end of the tunnel named hope? I mean seriously, you got broken leaky pipes and they're gonna get fixed! Okay I'm getting too excited for you haha.
Sharon wrote:Hmm, interesting --this is exactly what Dr. D has been doing for the past six months---fixing a vascular issue. So, I wonder where the Stanford Neurological Dept fits into this study?
He thinks that lying all night in a supine position with jugulars that don't work has left my brain in a bad state and when I'm finally standing it has to catch up and clean out.
Sharon, Dr. Dake told me that he is trying to make the study interdisciplinary and have some of the neurologists at Stanford participate--as this may give it more authority I guess. But he says it is difficult--they just don't care or don't want to even engage with him on the ideas and the research.
One thing that was interesting is Dake thinks my jugular stenosis is contributing to a problem I have had for years. When I wake up in the morning I feel like crap. I'm slow, brain dead, sluggish...it takes me 3-4 hours to really get going. I have mud for a brain. I start to feel better as the day goes on.
prof8 wrote:Well now I understand what people mean when they talked about inclined bed therapy. I have a king bed too. Not sure how it can be inclined. I also sleep in a sprawled way. Interesting that you slept the best in the hospital bed on an incline. I guess it just means I need to get the surgery!!
prof8 wrote:I think someone on here said that MS is the "bread and butter" of neurologists on here. Probably headaches too, so I guess they feel threatened? But you would think they might actually want to investigate something that could possibly ease their patients' suffering. Do they even care about the patients more than $$ or prestige from their research? Do you think they are envious that someone came up with a new revolutionary theory that may completely shift how we think about MS? My husband and I were discussing this tonight and trying to come up with motive. You really want to believe that people will act decently. It's not even like the Stanford neurologists are saying"hey this may have merit, let's keep an open mind, let's call for more studies.". NO, they want nothing to do with it and are more than hostile.
prof8 wrote:Mark, I may just have to look into the inclined bed therapy for sure. So I'm assuming after your stent treatment a lot of the morning brain fogginess went away?
Johnson wrote:Like Supertramp sang - I see, only what I want to see, but I have to believe in something...
I usually go with the empathy/apathy thing. The empathy is understanding your whole idea of who and what you are just crashed into a state of grey unknown overnight... kind of like what we all experienced on our own fateful days. There are a lot of professionals that are feeling a bit dumb-founded right now, I would think. Academia is abstract. It is numbers and outcomes, metrics, grants, paychecks, one's own concerns. My neurologist does not know me. He feels me out for the first few minutes, trying to remember his last experience with me. He leaves and goes down the hall to the other dis-robed invalid. He comes back. His cell phone rings. It is his wife. They discuss, in Spanish, their upcoming holiday. He hangs up. I tell him what my life is like - that stress has been really exacerbating lately. He tells me that there was no reported increase in relapses in Gaza during the sieges, and that was stressful for those people. He speaks into his Dictaphone while looking at me out of the corner of his eye, gives me the smile, and dismisses me. I wonder, as I leave, how the heck those under siege would report anything.
People who work in abattoirs don't see the sad/terrified eyes after a while, it's just a job. It's Friday afternoon. That is the understood apathy.
I'm sure that both worry about lay-offs.
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