This Is MS Multiple Sclerosis Community: Knowledge & Support

[Shannon]

Congratulations, prof8! Your story is very inspiring, and I cannot wait for the next chapter! I don't care what side of the study I am on, just that I get in it. I can wait. Heck, I've waited this long! I have a feeling mine would be pretty messed up too, and I also don't have incredible disability. I can't wait for more research and knowledge about what the heck this is all about, too! I mean, I've been researching MS for 15 years and nothing else has gotten me this excited. Glad you had a good trip and know we're all rooting for you now.

[Sharon]

Prof8 - thanks for posting more information about the trial. You wrote

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.

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?

Anyway, glad to see that you have blocked veins -- pancaked, huh? Dr. Dake "coined' that term when he was trying to describe my veins (since I was his 3rd patient, he was trying to figure out descriptive words for something he had not seen before). You now have an answer and a solution (if you choose). Hope you are the first on the list for the trial.
Thanks for posting the details of your consultation -- I think it really helps everyone to get an insight into the process and also a pre-introduction to Dr. D

Sharon

[prof8]

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.

Mark.

Mark, I am still feeling a bit overwhelmed I think. It does seem more "real" now and isn't it just amazing that over and over again, Dake keeps finding MS patients with the same kinds of vascular flow problems? I think I am panicking that I won't get into the trial (which is probably irrational) but after seeing 90-95% occlusion on both lower jugular veins and stenosis in the left upper jugular, I'm scared of what might continue to happen if I don't get it fixed! Perhaps I'm anxious because it was so hard to walk away after seeing that on the screen. Now I just have to wait and sit tight. I better be allowed to get these leaky pipes fixed!!!

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. 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.

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?

Sharon

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. I guess they will sign on based on what people have said, but since it is a vascular study (not one testing to reduce lesions, relapses per se) they feel like they could participate indirectly. They sound like a cranky lot!

[Sharon]

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.

Until you get those veins cleaned out, maybe you should try Andrew's inclined bed therapy. Just a thought

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.

Geez, do the neurologists think they have a patent on MS - that no one else can touch it without their approval or without paying for it? Just really ticks me off!

Thanks again.
Sharon

[MrSuccess]

Is Ford interested in helping Chevy ?






Mr. Success

[Johnson]

Is Ford interested in helping Chevy ? :wink:






Mr. Success

In this case, it might more properly be asked if Chevy wants to help Ford...

[prof8]

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.

[CureIous]

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.

Yeah oh yeah oh oh yeah you got that right. Now Dr. Haacke tells me coffee has deleterious effects on blood flow into the brain, oh okay so you get a psychostimulant like caffeine, which is countered by vasoconstriction ie less blood flow to the brain? Oh THATS why it stopped working! Hey you know my vices are few but doggone it if I'm giving up my coffee!

Getting back to a very important topic, which we talk about a lot on here and deserves much airplay is the whole inclined bed thing. I think that might be why (at least for me), that miserable post-op night in the hospital, left me so bouncy and refreshed in the morning, even after just a few hours sleep. I mean obviously a big part of that was improved blood flow, toss in the IV steroids and a banana bag as they call them, and even with a miserable sleep I felt GREAT in the morning. It was almost too much to handle, taking it easy but wanting to run around like the energizer bunny. Thinking back about it though, one must consider that beyond all the meds and surgical fix-its and the like, the night was also spent sleeping at an extremely inclined angle, at least for me, mister flat out stomach sleeper take up the whole bed guy. I sprawl, and I cannot STAND to sleep inclined like that hospital bed. But you know what? I think those few hours of sleep were the best I've had in a long time!

While I would LOVE to do this with our king, it's just not feasible at the moment strictly from a logistics standpoint. Definitely on the list for the future.

Mark.

[prof8]

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!!

[CureIous]

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!!

I hated every minute of it when I wasn't sleeping lol. SO desperately wanted to "flip over" and just sleep on my IV's. Nurses wouldn't let me put the bed down so when the morphine kicked in, I would doze for an hour, maybe two. Then it wore off and needed another shot, more dozing. I'm still pondering if it was the drugs/steroids/vitamin IV and open jugs, or the IBT tossed in as icing on the cake. For the first couple days I basically slept propped up on the couch so as not to disturb the boss, seemed to have the same effect. Even now when I sprawl out I don't wake up as refreshed. Maybe I can just tilt my house, seems that would be easier lol.

Mark.

[Johnson]

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.

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.

/babble

[prof8]

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?

I went by today to introduce myself to Alex before I leave to go home. Somehow I missed her the day I consulted with Dake. What a sweet woman. She told me the target date for the trial to start is Jan.-March. So if you find yourself waiting until March to hear something, don't panic! She did not know how many people will be in the trial. She ended up having to cancel 6 surgeries and was really bummed to have to make those calls. Those 6 people are flagged by a blue sticky on their folder (saw with my own eyes!) and they are at the top of the pile to be the first considered for the trial. I saw many other medical files too in a pile too. So I hope many more of you can get into the trial. Best of luck.

[CureIous]

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?
.

Thanks for the report. Glad you got to pal around with Alex for awhile. She's a true gem. And yes my fogginess is gone and my waking hour as good as my last. Okay I do my BEST thinking at night haha. Taking care of a 2 year old sunup to sundown has compounded whatever normal stress there is, but am rolling quite nicely with the punches.

Am looking forward to hearing all the newbie reports in a few months and it will pass by FAST!

And yes, Alex does take things to heart and along with the rest of the staff, genuinely care about all of us. I know I gush too much but can't help it!

I like the blue stickers. Code Blue. First in. Nice touch....

Mark.

[CureIous]

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.

/babble

Brilliant, funny, and sad all rolled into one... And congrats for finally getting a Gaza reference into CCSVI....

Mark

[ozarkcanoer]

Johnson... brilliant !!!!!!!!!!!!