the Eye Doc blog

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

the Eye Doc blog

Postby Cece » Wed Feb 23, 2011 6:06 pm

http://theeyedocblog.com/2011/02/09/upd ... and-ccsvi/

After the procedure, I felt better, even the same day. As a doctor, I am well aware of the “placebo effect” and I try to look as objectively at my condition as possible. I also know that I need to give it time to be sure the placebo effect is unrelated.
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Postby HappyPoet » Fri Feb 25, 2011 4:05 pm

Cece, thank you for finding this terrific article, "Update on Ehlers-Danlos and CCSVI," written by Dr. Diana Driscoll, an eye doctor who has EDS and had angioplasty for her CCSVI.

Dr. Diana wrote:Meanwhile, I must thank Dr. Michael Flanagan for tirelessly helping me through all of this. He is absolutely brilliant in the areas of CSF flow and anatomy of the brain and cervical spine. I am one of those people who needs to understand everything, but he has hung in there with me through it all, even though I’m sure he’s had to repeat a number of things for me as I digest them and apply them both to myself and the many other EDS/M.S. patients I correspond with.

Here's another fantastic article by her, titled "Dr. Diana Driscoll With an Exciting Ehlers-Danlos Update."

Dr. Diana wrote:May I please introduce you to Dr. Michael Flanagan? He is a brilliant doctor who has been studying and researching this condition (and how it relates to M.S., Parkinson’s, and Alzheimer’s) for about 25 years! The anatomy of the skull and upper cervical spine is complicated, but the CSF (cerebral spinal fluid) flow pattern is extremely difficult to understand. Dr. Flanagan understands it down to the tiniest detail. He was able to explain to me what I have been unable to put into words for years.

Here's the link to Dr. Flanagan's TIMS' thread, CCSVI and CCVBP

Reposted on Dr. Flanagan's TIMS' thread.
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ccsvi

Postby blossom » Fri Feb 25, 2011 6:06 pm

thank you cece for finding and posting this article..pieces of the puzzle......like a hand and glove.

again, we are all so different. this disease of many symptoms they named ms can not be owned by any certain doctors. we need them working together with the common goal of figureing this out----and cureing it. one shoe will not fit all, ccsvi is helping some but not all. "why not?"--because we are all different---that's why it is sooo important they start working together. no door left unopened.
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Postby Cece » Fri Feb 25, 2011 8:06 pm

Well said, blossom, as always. And HappyPoet too. The "Eye Doc" is definitely in agreement with Dr. Flanagan's theories. And I am always happy to read of successful CCSVI procedures.

I didn't know what Ehler-Danos was, so I followed a link to a different blog article of hers, and found this:
We’ve also noticed that too many people with EDS also develop multiple sclerosis. Some of you are aware that a soft cervical collar at night time has helped us, as has Diamox (a diuretic that crosses the blood-brain barrier, taking fluid pressure off of our brains). This has been a consistent finding, but no one has been able to explain to me why it helps, and why it doesn’t eliminate the problem entirely – until now.

Not having heard of Diamox, I google it, and the first thing that turns up is an article about its use in mountain climbers (!). Mountain climbers suffer from hypoxia, much as our brains do.
Acetazolamide (Diamox®)

Acetazolamide (Diamox®) is a medication that forces the kidneys to excrete bicarbonate, the base form of carbon dioxide; this re-acidifies the blood, balancing the effects of the hyperventilation that occurs at altitude in an attempt to get oxygen. This re-acidification acts as a respiratory stimulant, particularly at night, reducing or eliminating the periodic breathing pattern common at altitude. Its net effect is to accelerate acclimatization. Acetazolamide isn't a magic bullet, cure of AMS is not immediate. It makes a process that might normally take about 24-48 hours speed up to about 12-24 hours.

http://www.basecampmd.com/expguide/diamox.shtml
Not sure if any of that is going on in pwCCSVI (hyperventilation in an attempt to get oxygen or the periodic breathing pattern common at altitude, unless that is related to MS-related central sleep apnea).

But if people with E-D often develop MS, and Diamox helps people with E-D, and Diamox helps mountain climbers, and our brains are subject to hypoxic conditions just like a mountain climber, maybe Diamox might help people with MS/untreated CCSVI. Diamox is also used to treat idiopathic intracranial hypertension, which has been mentioned as an analogue to MS, not sure exactly how.

Here's the explanation from wikipedia:
The drug forces the kidneys to excrete bicarbonate, the conjugate base of carbonic acid. By increasing the amount of bicarbonate excreted in the urine, the blood becomes more acidic.[11] Acidifying the blood stimulates ventilation, which increases the amount of oxygen in the blood.[12][13]

bingo!
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Postby blossom » Sat Feb 26, 2011 12:03 am

CECE, YOU GO GIRL!! how in the hell do you it? those little fingers and eyes must never leave the computer. however you do it i'm awful glad.

it's coming together we need dr.'s to come together. and we need to get behind all of them that are needed and willing to try to put this together.
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Postby HappyPoet » Sat Feb 26, 2011 7:25 am

Cece wrote:bingo!

Cece, you're an amazing person, and TIMS is so lucky you're a member.

Thank you very much for this research; have you thought about sending it to Dr. Diana Driscoll? She corresponds with pwMS, and I'm sure she would appreciate the information you've found.
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Postby bluesky63 » Sat Feb 26, 2011 9:46 am

It is so wonderful to see how threads connect here. :-) The pace of figuring out what is going with our bodies increases exponentially.

There is an unusually high number of people with MS who either have Ehlers-Danlos themselves or have it in their family. It's in my family, and if I remember right (I don't want to speak for other people) Cheerleader has said that one of Jeff's family members has it as as well. I know we've had threads about it.

Ehler's-Danlos involves various collagen and connective tissue defects, and in one form presents as as vascular defects. It makes sense that there could be involvement with something related to venous issues.

I talked to the national Ehlers-Danlos people a year ago to bring their attention to CCSVI, and I hoped they would follow the developments and let other EDS people see what was happening.

Some people who don't meet the official EDS criteria have hypermobility, which still involves collagen and connective tissue.

If I have time I'll look for some of the threads we've had. I think there were some good discussions. Maybe. :-)

This is awesome stuff. Thanks for bringing it together and keeping it alive!!!

OK, here's a link:

http://www.thisisms.com/ftopicp-92741-ehlers.html#92741

and another:

http://www.ncbi.nlm.nih.gov/pubmed/18208891

-- Which is very compelling, with an MS rate of 10 to 11 time the general population (although the study is small).

and I'm adding this one, which is about EDS and MS (but might fit better in the area for nutrition):

http://www.nhfw.info/multiple-sclerosis.html

and just for interest value, here's one on vascular EDS:

http://www.ncbi.nlm.nih.gov/pubmed/18208891

Edited to add -- she calls herself the "eye doc," but I've just spent some time poking through all the EDS info, and it is a fantastic resource on everything. Thank you so much for finding it!

Ikulo, we cross posted! You are much better at making the info clear! :-)
Last edited by bluesky63 on Sat Feb 26, 2011 10:38 am, edited 5 times in total.
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Postby ikulo » Sat Feb 26, 2011 9:53 am

I was initially skeptical about the extent of the ED and MS connection, but then found this

http://msj.sagepub.com/content/14/4/567.abstract

Ehlers—Danlos syndrome (EDS) has various neurological manifestations. Here we present an association of EDS with multiple sclerosis (MS). Four MS patients from a total of 1892 followed up at our MS outpatient clinics had EDS. This frequency suggests 10—11 times increased prevalence of EDS in MS patients compared with the general population (P = 0.02). Suggested implications include a possible causal relationship on a connective tissue level with a higher susceptibility to MS in EDS. Diagnostic and management considerations are important in coexisting MS and EDS. Our patients had relatively florid lesions on brain MRIs and typical course and features of MS. Multiple Sclerosis 2008; 14 : 567—570. http://msj.sagepub.com

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Postby Cece » Sat Feb 26, 2011 1:03 pm

I find this a really interesting topic, bluesky thanks for the links to previous conversations.

If Diamox's function against hypoxia is to acidify the blood and if acidfying the blood increases the oxygen in the blood, then what other ways are there to increase the acidity of the blood? Or is this a bad idea? A quick google search names off acidic foods vs alkaline foods as well as that exercise generates a lot of acid.

The connected between Ehlers Danos and MS/CCSVI has to be the collagen abnormalities in the blood vessel walls.
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Postby bluesky63 » Sat Feb 26, 2011 3:40 pm

OK, I am probably in over my head here, scientifically speaking, but does increasing the acidity increase the *oxygen* or does it increase the free radicals? I am thinking of acids vs. bases, and I am not sure what the right balance is for blood. Maybe our blood is different, too. Someone, please help! I can't think anymore but I am trying! I am always so grateful for what other people bring forth! :-)
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Postby Cece » Sat Feb 26, 2011 3:54 pm

I am not sure.
Cece wrote:Here's the explanation from wikipedia:
The drug forces the kidneys to excrete bicarbonate, the conjugate base of carbonic acid. By increasing the amount of bicarbonate excreted in the urine, the blood becomes more acidic.[11] Acidifying the blood stimulates ventilation, which increases the amount of oxygen in the blood.[12][13]

bingo!

here's the links for [12] and [13]:
http://www.altitude.org/home.php
http://jap.physiology.org/content/102/4/1313
and the wikipedia article itself:
http://en.wikipedia.org/wiki/Acetazolamide
and [11]:
http://archive.rubicon-foundation.org/7602
Acetazolarnide (AZ) can be taken at sea level (SL) to prevent acute mountain sickness during subsequent altitude (ALT) exposure. AZ causes metabolic acidosis at SL and ALT, and increases arterial oxygen saturation (SaO2) at ALT. HYPOTHESIS: AZ will impair muscle endurance at SL but not ALT (4300 m, <3 h). METHODS: Six subjects (2012 yr; Xl SD) performed exhaustive constant work rate 1-leg knee extension exercise (2512 watts) once per wk for 4 wks (2 wks at SL and 2 wks at ALT). Each week, subjects took either AZ (250 mg) or placebo orally (double blind) every 8 h starting one-day prior to exercise. All exercise bouts began 3 h after the last (i.e., 4th) dose and 2 bouts began 2 h after ALT exposure. RESULTS: AZ caused similar acidosis in the same subjects at SL and ALT, but muscle endurance was impaired only at SL. CONCLUSION: Lack of endurance impairment at ALT during AZ was likely due to offsetting secondary effects resulting from the acidosis (e.g., increased SaO2) that improved muscle oxygen delivery.

google scholar results for ehlers danos and Acetazolamide:
http://scholar.google.com/scholar?hl=en ... tazolamide
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DrDiana here! EDS/MS and Diamox

Postby DrDiana » Thu Apr 14, 2011 10:23 am

Hi Everyone!
I just saw this thread, and I'm hoping it is not too late to jump in. You guys are SO SMART, and you found the article about the link between MS and EDS. I think it goes even deeper, and I think I have some help for many of you, whether successful with angioplasty or not.
As you said, we are all different from each other, but Bluesky63, you ESPECIALLY may find these things pretty amazing, as you have an EDS Dx floating around in your family.

But I needed to say something about the Diamox right away. (Understand that I was "couch ridden" for about 3 years and have been on professional disability for 7 years. Both of my kids are affected, too, so we are DEEPLY involved. I'm not talking to you from some academic high horse, K?) The reason I went for Diamox is because it decreases the production of CSF (cerebral spinal fluid) and it is a mild diuretic, so it helps flush some of this backed up fluid out of our brains. I was showing WAY too much CSF in my skull, and it looked like it was PUSHING my brain down, irritating many of the cranial nerves. <OK, Diana, get to the point>.

The point -- the Diamox immediately eliminated my occipital headache, radiating down my neck an onto the tops of my shoulders (overnight. really). It allowed my DEMENTIA (way beyond brain fog) to diminish by about 90%, and too many other symptoms to go into here, diminished or disappeared. I was headed toward MS, I had angioplasty for my CCSVI, and the symptoms that stopped were the "MS-ish" symptoms. I am confident enough about CCSVI to have my 13 year old treated, and we take in our 14 year old this summer.

But the Diamox is NOT used to CAUSE acidosis for us. In fact, it stops working if you become acidic (your CO2 goes below 22). So I take pills to remain less acidic.

I am going to be starting a website soon called "Prettyill dot com" and will have an intro video on the coming soon page for you. I'm going to be working on some studies (with some BIG names in EDS) that I'd love to share with you. They are all at no charge, and one involves getting info to me -- all online. No travel. Yea. I believe that many MS patients have undiagnosed EDS (90% of us are never diagnosed) and WAY too many EDS patients go on to have both conditions (where I was headed. I have 1 brain lesion). OH - also, I think many of us are more prone to strokes, and have brain ischemia (lots to talk about there). Diamox can be a treatment post-stroke to reduce the ischemia around the area of the brain affected and minimize the effect of the stroke.
As an eye doc, we used a ton of it to treat "pseudo-tumor cerebri" which is a form of high CSF pressure. It's a cheap drug, that we understand well.
But there is lots more to talk about than just the Diamox. I look forward to sharing what I've learned.

I was going to jump in when I had my site up, but this seemed too important to ignore for you all. Can you help me get this to Bluesky63, Cece, ikulo, blossom and HappyPoet? I need to learn how to insert quotes, articles, etc into this site and contact people directly (learning curve).

You guys are great.
:) DrDiana
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Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby Cece » Thu Apr 14, 2011 10:31 am

welcome to the site, we are glad to have you! Thank you for the information on the diamox especially, it is a drug I had never heard of before, and I am still unsure of the role of CSF in the cerebral hemodynamics especially when CCSVI is a factor.

But I am also very interested in what you said about your children -- did I read that correctly, your 13-year-old has had CCSVI treatment? How is he doing? What veins were affected? I have a young child who is showing many of the symptoms I had before my MS diagnosis, including cogfog and memory issues; I have not had him tested because he is too young for the treatment but I have inclined his bed two weeks ago (I think it has helped but who knows?). Flashover is another poster here who is always looking out for information on pediatric CCSVI.
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DrDiana here! EDS/MS and Diamox

Postby DrDiana » Thu Apr 14, 2011 11:37 am

Hi Cece,
Thank you for responding -- it is such a huge forum, I wasn't sure if anyone could 'hear' me! :)

One of the things I'm figuring out is that for EDS (especially with viral-induced autonomic dysfunction and all that it entails), a lot of us have poor CSF (and/or veinous) drainage from our brains, which means we can't get the fresh oxygenated blood IN, because we can't get the fluid OUT -- there is no room, if you get my drift. Hence, the "brain fog", collection of crud (that's a scientific term) ;) on our brains and all of the fall out from that (fallout including the development of MS).

For many patients, angioplasty is not effective if we can't get the CSF INTO the veins in order to drain (our arachnoid villi are either damaged from the connective tissue disorder, or from viral antibodies that can cross our deformed blood brain barriers -- which are made of connective tissue, dang it).

You still with me?

So, we reduce the pressure immediately with Diamox (by decreasing CSF production and encouraging drainage because it is also a mild diuretic). Now if that works, we've just avoided a shunt.

If Diamox is not fully effective (like me), I believe it is because not only is the fluid not escaping our brains through the arachnoid villi, but what does escape into the veins is not draining correctly (because of the CCSVI). And yes, my son and I have slam-dunk CCSVI and I truly believe we prevented the onset of MS for him by treating him with angioplasty. (Yes, it's a new procedure, but if you look at my horrifying family tree, you would see why we decided to go for it).

My son and I still are religious Diamox users and without it, I actually have CSF fluid coming out of my nose (lovely visual) -- a "CSF rhinorrhea". We are hoping that by reducing the pressure on our brains with the Diamox AND by keeping the veins in our necks open and ready to work, we are doing everything we can at this point to reverse the downward cycle, and preventing not only MS, but perhaps other neurodegenerative diseases (more on that later). This is also why we're having our 14 year old daughter checked and treated if she shows CCSVI.

My son has "jugs" just like mine (I'd put in a pic if I knew how). One is too large from a faulty valve at the base (which was ballooned) and the other IJV is so small I can't believe the IR even found it to balloon it! My son hasn't noticed much of a difference, but we had to cut back on his Diamox in order to make him less acidic so it would work again. I think in our family (and many others), it takes BOTH - drainage FROM the brain into the veins, AND drainage OF the veins. Does that make sense?

And we slanted his bed, also, when we saw the bidirectional flow from Haacke's report. But he just slid downhill and was in this little ball at the bottom of the bed! We're considering velcro. ha.

I would like to see MRI's of "failed" angioplasties, to see if they have the classic presentation of slightly high CSF pressure (likely from birth, which is one of the studies we're heading up). I've been able to find a handful of kids who have autonomic dysfunction whose head circumference in the first 15 months of life (before the skull sutures are closed) grows TOO FAST -- a sort of communicating hydrocephalus, but not to the point to cause seizures. I believe CCSVI is congenital, and am starting a study soon to see if that is the case.

Lots of new things coming up. I am a proponent of CCSVI (but not shunts yet, unless they are the only option) because angioplasty took away all of my "MS" symptoms, though not all of my autonomic dysfunction. I'll have my theories for all of this on the new website. Whew.

I'm sure you're about to nod off here, but I look forward to sharing all of this with you guys.

I'll see if I can find Flashover... :)

Gentle hug....
Dr. Diana

Special interest in "brain drains" and how they affect numerous conditions, including MS, Ehlers-Danlos, Parkinson's, Alzheimer's, etc. I am a therapeutic optometrist on professional disability with EDS, POTS, CCSVI, mast cell disea
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Postby Blaze » Thu Apr 14, 2011 12:44 pm

Welcome, Dr. D and Thanks! I'm sure you're going to be a wealth of knowledge in helping to put this puzzle together!
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