Don't Forget - Sunday Nov 20 at 3:30pm

Tomorrow afternoon Dr Francomano and Dr Driscoll will be online discussing EDS and CCSVI.
But the entire CCSVI Expo will be very interetsting I'm sure but who can sit and listen for 36 hours straight to about 30 different doctors that have dedicated their lives to the study and research of these problems.
If you have Chronic CerebroSpinal Venous Insufficiency or even think you might have it, you should try to tune in at some point between tomorrow morning at 10AM and Monday at 10PM.
http://ccsviexpo2011.eventbrite.com
Here's the schedule so far.
http://www.nationalccsvisociety.org/wp-content/uploads/2011/11/Global-CCSVI -Expo-Event-Schedule.pdf

Sunday, November 20, 2011
**All times are based on Pacifi c Standard Time and are approximate based on speaker time requests
10:00 AM- Welcome to the 2011 NCS CCSVI Expo
11:00 AM- Dr. Salvatore Sclafani
11:45 AM- Dr. Paolo Zamboni
1:00 PM- Dr. Michael Dake
1:30 PM- Dr. James McGuckin
2:00 PM- Dr. Kirsty Duncan
Topic: “CCSVI in Canada: PAST, PRESENT, AND FUTURE”
3:00 PM- Dr. Trevor Tucker
Topic: “CCSVI Refl ux, Hypertension, Hypoxia and Scleroses”
3:30 PM- Dr. Diana Driscoll and Dr. Clair Francomano
Topic: “CCSVI, MS and EDS: What are the common links?”
4:30 PM- Dr. Mark Haacke
5:00 PM- Dr. Bernie Juurlink
Topic: “Historical Aspects of CCSVI”
6:00 PM-Valerie MacNeil
6:30 PM- Sharon Richardson
Topic: “A personal CCSVI history and the formation of CCSVI Alliance”
7:00 PM- Joan & Jeff Beal
7:45 PM- Steve Garvie
8:00 PM- Brenda Raven
Sunday, November 20, 2011
**All times are based on Pacifi c Standard Time and are approximate based on speaker time requests
8:30 PM- Shara Grice
Topic: “Protecting your own and each other’s PRIVACY.”
9:00 PM- Warren Stefanuk
Topic: “CCSVI Alberta”
10:00 PM- Ginger McQueen
10:30 PM- Lorin Powell
Topic: “A peek at life before and after venoplasty from a husband in love all over again.”
11:00 PM- Michelle Walsh
Topic: “You never know how strong you are until you have to be.”
11:15 PM- Debra McDonald
Topic: “Quality of Life With MS”
11:30 PM- Dagmar Lofts
Topic: “Personal Reflections”

THE FUN’S NOT OVER... It continues into
Monday, November 21, 2011!!!

Monday, November 21, 2011
**All times are based on Pacifi c Standard Time and are approximate based on speaker time requests
12:00 AM- Jenna Machala
Topic: “Disappointments and Hope”
12:30 AM- Michele Mateus
1:00 AM- Mark Lohse
Topic: “CCSVI Treatment in Poland”
1:30 AM- Paris Michaelides
Topic: “MS drugs? I don’t think so!!!”
2:00 AM- Kerri and Helen from CCSVI Australia
Topic: “The CCSVI Hot Seat”
5:00 AM- Dr. Brian Montague
5:30 AM- Terri Sleeva
Topic: “Terri talks about her experience with CCSVI treatment.”
6:00 AM- Dr. Gregory Soares
Topic: “CCSVI: A roundtable discussion with Interventional Radiologists”
7:30 AM- Dr. Bill Code
Topic: “Restenosis, Anticoagulation, and Medical Approaches to CCSVI”
9:30 AM- Dr. Michael Arata
10:00 AM- Dr. Todd Harris
Topic: “Basic CCSVI treatment and advanced techniques”
10:30 AM- Dr. Joseph Hewett
Topic: “The Haacke MRI and its importance to the MS patient.”
Monday, November 21, 2011
**All times are based on Pacifi c Standard Time and are approximate based on speaker time requests
11:00 AM- Dr. Gary Siskin
11:30 AM- Dr. Nina Grewal
Topic: “Pre-Operative and Post-Operative CCSVI Care”
12:30 PM- Adele Kulyk and Tina Leckie
Topic: “Living Healthy with Your Chronic Condition”
1:00 PM- Dr. Maciej Zarebinski
Topic: “Angioplasty for CCSVI - successes and pitfalls - AMEDS experience.”
2:00 PM- Francine Dechaines and Christopher Alkenbrack
Topic: “BILINGUAL: Refl ections on an early treatment experience”
3:00 PM- Carol Schumacher
3:45 PM- Lori Lumax
4:30 PM- Janet Grieco
5:00 PM- Michel Sastre, Landon Schmidt, and Lorin Powell
Topic: “CAREGIVER AND PARTNER HOUR”
6:00 PM- Marie Rhodes, RN
Topic: “Social Media and CCSVI: The Beginnings, with Q&A”
6:30 PM- Stacy Lee Saman
Topic: “From Wheelchair to Goth Boots; Back, and Back Again!”
7:00 PM- Dr. David Williams
Topic: “‘Healthy-spring’: How CCSVI has changed our path to health.
A Dentist’s perspective.”
8:30 PM- Nicky Addison and Bev Bentley
Topic: “CHILDREN OF CCSVI HOUR”
9:30 PM- Expo Closing (30 minutes)

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19 replies. Join the discussion

Note - all of that is pacific time!
So for those of us on the east coast, the EDS hour will be at 6:30.

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DebsAatu,
Thank you so much for posting this, it was such a thoughtful thing to do!

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Thank you SO MUCH. I was just going to ask what time Dr. D and Dr. Francomano were scheduled for. I couldn't get the schedule of speakers to load for me. Definitely DO NOT want to miss those two.

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That was great and the other presenters are bringing a lot of great info to the table too. LOTS to think about and consider.

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I KNOW - My mind is spinning with some of this information - putting it together in my case and my sisters and my mom's can be a little confusing since we have different yet similar symptoms. We are our own little study hehe. I will focus more of my attention on ischemia of the veins now. (btw, I was debdrake on there)
I was glad they asked my question about whether the mast cells are causing CCSVI or causing CCSVI symptoms by the ANS telling the vessels to constrict. Or are the vessels just too small?
I was hoping they'd say if it is truly causing CCSVI, the treatment should help. But if it's causing just symptoms of venous insufficiency, angioplasty would not help.
But then on one screen it said that " the Driscoll Theory ties together the effect of low level hydrocephalus with resulting ischemia causing mast cells to over respond resulting in inflammation and the stenosis of many veins throughout the EDS body"
So that indicates weak tissue causing hydrocephalus then causes vessel constriction which causes mast cells which then damages blood vessels. That makes sense but it can quickly create a positive feedback and makes it difficult to truly hit the problem at the root.

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I wish I wouldn't have missed this post, oh well hopefully I can catch it somewhere else or next year. Thanks for these wonderful posts for the neebies!

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Wow excellent to watch this but have to say a little confused about what triggers what?!Didn't help that I had severe headache and brain fog while trying to understand all this ha ha !

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Do you know if this will be available to watch at a later date? I totally forgot about it!

Thanks!

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This is the first time doing this but they are recording it and hope to be able to sell them. They do not know how much it will cost. Theysaid if you signed up through eventbrite, you will be notified of the recordings when they are available. http://ccsviexpo2011.eventbrite.com/
It's all aimed at Multiple sclerosis except for that one hour but it seems the mechanics of it all are the same so you may want to listen to some today.
I would like to hear what the dentist has to say tonight too though he will be at 10pm on my time. I have been fortunate with the teeth problems compared to others in my family but last time I went to the dentist it triggered a terrible vascular issue for days afterward - raynaud's and livedo reticularis. That night my fingers turned blue and my skin was laced with red lines and it kept happening for days though the LR really stayed for days the raynaud's would come and go and I got sores on my feet and it was mid-September and warm out!

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Hi Debs Aatu,

Thank you SO MUCH for posting this! I had no idea! Big hug...

That was a GREAT question you asked, and one that I have a theory on, but didn't know how far I could take the answer as a researcher, as opposed to a patient, testing this out on herself!
But for you guys, I'll let you know (more in Part 2 -- I hope that didn't come off as a cheap infomercial!) :) I believe that our mast cell responses cause (or CERTAINLY exacerbate the CCSVI), plain and simple. The degranulations that they spit out are known to change collagen of the vessels, causing stenosis and they interfere with N.O. (more on that later), so that our vessel endothelium ends up kind of sticky, if you will. HOWEVER, bummer, man, I think some of these changes are permanent, no matter how much mast cell meds we take at that point, I'm doubtful that it will reverse the damage. But I think it will halt the process.
I'm also studying a few other chemicals that I think are involved -- Endothelin-1 is a big one. Our arteries on my fundus study were shocking.

I will say, though, that if you have mast cell issues, and you treat it, your symptoms will improve -- of that, I'm sure. For patients scheduling angioplasty, I would heartily support a mast cell treatment trial first. So many of us have our veins opened up, only for them to collapse again, and I have a feeling that pre- post- and during angioplasty mast cell treatment (perhaps with some focused treatments on particular degranulations that I'm studying right now) may prevent that.

I have a couple of thoughts on why we are affected and go south later in life. I also have a couple of ideas that I'm kicking around about how to easily treat this early in life to completely eradicate POTS and CCSVI from our lives.

Does that seem like futuristic (and perhaps manic?) thinking? :) I think the future is now, my friends. I really do.

All I did was put other people's research together (like pieces of a puzzle), then fill in a couple of possibilities with clinical trials, reaching out to you all for our similarities, and being a guinea pig! I shall reveal all, as it is confirmed, OK?

I can't tell you what your (collect) support means to me. You have no idea how you've kept me going.

Group hug,
:) Diana

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Really exciting research ,dont really want to be stuck like this ,but better than getting even worse.If we can halt the progression and prevent further damage and protect our precious younger generation that has to be an incredible achievment!Good luck we are here for u!

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I am confused and dunno what to do about all of this. I have EDS-HM. I have a symptom set that I cannot seem to accurately plug into any of this. Can someone help? Firstly - I do not have MAST cell issues such as out of control rashes or skin writing ability etc... I do have skin sensitivity - that can turn into a body wide rash requiring steroids - used to happen every couple years - now about every year... basic medrol dose pak and a steroid cream and I'm good to go.

I have had really bad labile blood pressure which has been a daunting task to treat - which a few days ago based upon 24 hour b/p monitor - has flopped over to entirely high readings - much higher than ever before at 54 y.o. - even 180/120! With dyazide, clonidine and bystolic. So now I'm on propranolol or Inderal rather than bystolic to see if that helps without bottoming me out. I may still get some lows with standing for prolonged periods - but I'm not doing that now activity wise so things are better that way.

I have bad varicose veins, diverticulosis is extensive, GERD is bad, a few hernias etc... to me perhaps just part of a bigger picture - dunno. Also mild sleep apnea but couldn't tolerate a trial with CPAP so do nothing for insomnia etc..

Chronic pain patient on meds and also chronic short term memory issues ... is any of this related? I had an MRI over a year ago that was done to further investigate a possible stroke per CT. No stroke but a bunch of white spots on the brain that everyone blew off except the radiologist who read the test - suggesting poss. ischemia, toxic stuff, MS type illness as a possibility ... but no one else acknowledged his findings as worthy of any attention.

I MUST lay down one to two times a day.... to relieve severe fatigue that comes on - compelled to lay down or fall down or not fall down but literally cry for the need to lay down immediately. After btw. 15 minutes to an hour - I somehow recover from that issue whatever it is..........now I wonder if it's my neck or my brain causing any of that fatigue d/t poor circulation of some vital fluid or blood....

Two conflicting opinions exist as to my neck - one group saying it needs fusion asap or I'll be in a wheelchair and the other camp saying that simply isn't so per all exams and diagnostics - both excell in their field - so I've opted out of surgery as I don't do so well with it

Is there a golden thread here that someone is missing in my care? I had a neck ultrasound once that was hard for anyone to read because of all the velocity or noise or some such reason so it was inconclusive and ignored.

My primary care (not neurology this time) is ordering a memory work up at an Alzheimers clinic because of short term memory loss issues ....... I always wonder if that is the same thing as what people here call "Brain Fog"....

I had epstein barr as a 13 year old and was hospitalized for a month back then --- so I wonder if that is why the chronic fatigue today... Or is it just the pain that's tiring...

Anyone got ideas -- especially as may correlate to these theories discussed here? Thanks

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Thank you for that information! I look forward to part 2 of your book. (btw, I didn't think of your little plug as a infomercial since you wont be 'selling' it so that was fine. It was more of a 'heads up'.)
At this point for me, halting the process would be good. I think that if the process was halted I would have all days like my good days, right? That is good. I don't actually have good days anymore. I generally have good hours. If I didn't have to eat, I would have good days I'm sure.
I think that one of the most difficult parts is that people have different initial symptoms. So it is hard to see what symptom came first.
I always had dysautonomia since I was born I believe. The biggest symptom at first was hyperinsulin and temperature regulation. I also stayed nauseated as a child. My mom took me out of school for a couple of years. But overall I lived a normal life, I didn't miss out on much from my problems thankfully other than eating pizza with the other kids. I ate pizza sometimes but it usually made me sick.
It seemed since I was 18, every year I got new symptoms. A lot of it is EDS but I know now that mast cells have been a problem for years.

But it was just last year that the mast cells went crazy. I started flushing regularly and episodes of sickness have gotten more intense. It started after exposure to poison sumac to which I had a very bad reaction.

I always blamed the POTS symptoms on a car accident where I fractured the back of my skull where it looked like a spider web. I always thought I had complications from that. And maybe that didn't help either. Then I've had whiplash twice since then which also didn't help. I had helicobacter pylori which gave me burning stomach ulcers for years and the treatment for that (in 1997) lead to severe IBS. I assumed leaky gut syndrome was the problem after that since I started reacting to more and more foods. Plus I was told it was fibromyalgia. The specific carbohydrate diet did help in 2003 but I lost too much weight on it.

So with all of those external things going on, I never even knew I had EDS or problems that other people have. I really did think I was alone with these symptoms for most of my life so I never said anything much and finally gave up going to doctors and went to school myself to be a naturopath hoping to find the answer there. I found many things that help and was doing better until the poison sumac incident.
Now I'm using vitamin C, histablock (herbal formula) and sinus support which is also an herbal formula but I don't have sinus problems really. It is an antihistamine and seems to be helping some. I likely need to increase the dose but at least it has no side effects for me like the OTC blockers.
I keep the benadryl and zantac for emergencies. They kept me from going to the hospital at least once which I have never done for being sick in all these years.
I want to try zyrtec too and diamox or the non-sulfur equivalent.
So I see a light at the end of this tunnel too. I know I wont be cured but I'd like to have my life back.
thank you again,
Deb

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I get those episodes too - maybe not everyday but almost everyday - where I have to lay down or I feel like I will fall down or just cry if I can't.
It seems to be going with a pressure in my heart and head at the same time. My heart will go crazy and I can feel it pounding.
I definitely have mast cell issues but I don't have dermatographia or out of control rashes either though I do tend to react to a number of things and get rashes especially along my hairline in the back but I never use steroids for it.
System mastocytosis or MCAD can cause those digestive problems you describe too. That is where most of my symptoms come from - digestive.
I have damage to my neck too so I can't help to narrow down which one is causing those awful episode. I am sometimes sitting when it hits but still have to lie down or it will not stop. I've tried to fight it and stay sitting and working but it only calms down after I lie down. It will last a really long time.
It could be part of the CCSVI symptom too. I really do think that is an issue for me now due to the mast cell issues.

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Oh man, I don't feel like any of this applies to me whatsoever. Maybe I just have a different mutation, haha. I have POTS but no signs of mast cell dysfunction or hydrocephalus. I have such a small head I have to buy my hats in the children's section. When I asked my mother she confirmed that hats meant for babies my age were always much too large.

To be sure, I think this is a masterful theory, it's just my frustration talking. My underlying problem seems to be a progressive autonomic neuropathy and when treatment modalities proceed in this direction (which it looks like they might) I'm not looking forward to being shut out.

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Thank you kindly for your response. I think perhaps to avoid burning out my good neurologist I'm going to the Memory Clinic - there they have neuro and such - do testing etc... perhaps here is where I'll bring up the CCSVI thing. I guess I should get up to speed with the most common manifestations of it - common treatment options - the new info being revealed by Dr. Driscoll & a clear understanding of it as symptoms relating to the EDS community of patients.... I would think a review of my records by a fresh set of eyes as at this clinic might be helpful - but as we know it can also be an opening to be 'attacked' and seen as a whiner or malingerer etc... I'll approach this new group with cautious hope. Then I'll ask my primary to get me to the appropriate people to help treat this if anything is found and the Memory group doesn't treat it....

I desperately want to feel better - and the 'simple' things such as proper hydration, exercise etc... seem overwhelming most all the time - keeping up with ADL's and needing to lay down twice a day for some minimal attempst to do these things is disheartening. I can 'bring it' for short periods of time - and glory in behaving like how I see most people - with vigor... but boy that window is a small window of the day... fun and exciting - but short - much too short!

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I had another one of those "I gotta lay down" episodes after talking to you and I really do think it has to do with food. I don't know why because it is a long time after eating that it hits. But I still think it may be a mast cell reaction. I also noticed that I had reflux about that time. I don't have acid so the ENT said there was no sign of reflux. But I feel the food come back up - all the way very often. When that happens, I get really tired. But at least this time, it was that beyond tired feeling - like my heart could stop under so much pressure and my head could implode if I don't get my feet up. I can feel my heart pounding but I don't know that it is going that fast really. It is just pounding hard. Is any of that the same as yours?

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Hi - Sorry that happened again to you - yuck. What did you mean about not having acid? Not sure I understand what you meant.... Anyway if you feel food coming back up - imho you sure do have reflux and pretty remarkable at that ... dsal who writes on here and is a dear woman also has bad reflux - she actually chokes on the acid ... and while I never used to do that - I had an isolated incident of it about a week ago and have no idea why - I woke up with burning acid in my throat and coughing etc... I take a nexium daily - and am allowed to take one before bed too if needed - but that's not too often.

My little 'bout of gi stuff was about 2005... about 3 years prior I'd had a stricture stretched of the esophagus... then had the feeling of food stuck 'again' - so they did an upper endoscopy and said my stomach was red - but no stricture in the esophagus - they did a swallow study too and said I had esophageal spasms causing the feeling of food being stuck like a stricture... It went away on it's own over time... so now food most all the time goes down pretty normal.

For me it's sort of a 'desperation' feeling to lay down... I can't really remember if my heart was doing flip flops or palpitations etc. or forcefully beating - but I have had those episodes for sure - where it's like your adrenergic stuff is just haywire and your heart is bounding... Since being on a beta blocker those episodes are pretty rare now - they were almost exclusively tied to sleep - so weird - because of that I ruled out anxiety - being anxious while asleep didn't make sense to me... I am anxious though - sometimes just because I want to know why the rest of the world can function upright and I have such an issue with it...

I've only read briefly about mast cell stuff - and I never identified with it ... I do remember my brother though is always blaming his eating and such or foods with heart palpitations and issues that way - I never knew why -

So I have yet to know why I'd have a 'red' stomach while being on Nexium or Protonix since about 1995 I believe! Dunno if anything I've said clicks or is just not anything you can relate to.... but if there's a 'pill' to fix it - I want it. If there's a special diet "put me on it" - if there's better diagnostics - scary as that is in relation to necks and angioplasty etc.. I say bring it on - But just how you go about finding a doctor to delve this deep into symptoms like this - I have yet to know. I do see Dr. T and Dr. F and Dr. H - but thus far nothing is changing - if anything I'm getting weaker because I'm moving less and feeling worse - since I moved to AZ one year ago I'm guessing I'm nealy 50% less strong - huge huge difference.

Feel better, k? Have a Happy Thanksgiving too :-)

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Hi!
Yeah I didn't word that very well about the acid. Of course there is acid in my stomach but even though I don't take antacids my stomach doesn't seem to be making as much acid as it should when I eat. I now occasionally take H1/H2 blockers when I get really sick with POTS, nausea, flushing etc. It kept me from going to the ER once. So that was good but H2 blockers naturally stop acid production in the stomach so that makes that worse. So I only take it when I absolutely have to. I've only been working with these ideas for about 6 weeks so I'm still experimenting trying to find a happy balance. But I took the blockers for about 3 days in a row one time and had terrible stomach and intestinal pain that was beyond my usual terrible digestive problems so I'm trying to not take the zantac as the H2 blocker.
Anyway, I usually have reflex with certain foods like dairy. But I don't feel any burning or get the sense of acid in it. There are some foods that that will give me acid reflux and I avoid them. But dairy and some others just seem like they come backup but there is no detectable acid. It comes up as it went down. I do have some weird digestive problems.
I had helicobacter pylori for years until 1997. That did a lot of damage to my stomach and I thought it may have even caused my reflux in the first place. Have you been checked for h.pylori? It can really irritate the stomach. I had an ulcer from that and my stomach burned a lot.
The interesting thing about h.pylori is that it when it is present, the body makes more mast cells to go to the stomach to fight it. So it is like having mastocytosis of the stomach. But that is different than having systemic masto even though it can give some of the digestive symptoms. But I haven't had h.pylori for 14 years.
I just got a host of tests and it came back that I have high gastrin levels. So the doctor had me tested for gastric parietal autoimmune antibody. that came back positive. It usually causes low B12 so that was tested at the same time and my B12 was really high. It was 1681 when it supposed to be between 211 and 911. So they aren't doing anything else about the gastrin or antibodies. I guess there is nothing medically that can be done. I suspect it has something to do with mast cells which I discussed somewhere else on this forum. but those are some ideas you could have checked. It would be interesting if your episodes of exhaust somehow coincided with mine. I'll blame mast cells in the meantime.

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