This Is MS Multiple Sclerosis Knowledge & Support Community

You probably already have your experts; Doctor; but in case you need a freehand for computer/data analysis/technical graphic; just ring

drsclafani wrote:i think the thread has been well received by most, although i was pillaried for my ego on another thread.

By a single person among hundreds, proving once again: it's impossible to please everyone.

Hi Dr. Sclafani,

drsclafani wrote:it is quite interesting that 200,00 hit milestone passed with barely a peep.

Your first post was March 14
100,000 posts on May 13 = 9 weeks
200,000 posts on June 30 = 6 weeks = 3 weeks sooner!

When I had flipped my calendar, I noticed your star on July 21 (the nine-week mark), then I checked your current views which showed 199,996!! The 1/3 fewer weeks took me, and I'm sure everyone else, by surprise!

so lets look at some of the undeliverables to you

1. a test still has not been read
2. we are discussing an atlas
3. I did not get an IRB proposal accepted

1. Did we forget to tell you that we would much rather ask the questions and have you answer them?
2. Will this be an Internet-based atlas and/or a print-based atlas? You can find your office and email inbox filled with CDs and images simply by posting a physical/PO Box address and an email address.
3. You can win approval with a second application--take as long as necessary to arrive at the right decision for you.

I'm raising my glass of grape juice to toast your previous 100,000 views, this 100,000 views, and your next 100,000 views, BUT the biggest celebration will come when you hit 1,000 of your smart, welcoming, caring, witty, thoughtful, expert, honest, polite, compassionate, and forgiving posts read by an audience of thousands! Wow!

In addition to helping us, you're busy saving organs and lives, teaching medical school, advising students, mentoring residents, overseeing your department, and so much more. I don't know how you do it all, but I am very grateful that you do find the time for us.

Thank you again, Dr. Sclafani, our Rock star.

~HP

Algis wrote:You probably already have your experts; Doctor; but in case you need a freehand for computer/data analysis/technical graphic; just ring

I was told by my husband last night that there is a word for this, when everyone pitches in like this; it is called crowdsourcing. (http://en.wikipedia.org/wiki/Crowdsourcing)

I'm a novelist, if ever those skills are in need. Do irb proposals require any character development or overarching themes and metaphors?

Congrats on the 200,000 mark!!!

Shayk wrote:Dr. Scalfani

So can MSers who have low thyroid function chime in here? When did your thyroid problems surface?

Several of my family members are on meds for hypothyroid including my daughter who also had part of her thyroid removed. At my sister's urging I had mine checked, AFTER my MS diagnosis and sure enough, I had it too. I'm now on Synthroid and Cytomel. I probably had it before my 2000 MS diagnosis. I had weakness, fatigue, & depression - all thyroid issues.

Dr. S.,

I had asked this question before, so please excuse if you've already answered and I was unable to find in this massive topic:

The Canadian government health research funding agency has called for clinic trial proposals from Canadians. Have you been in touch with any Canadian imaging/vascular/interventional radiology specialists to share your trial planning or to see if they can incorporate your work to date into a Canadian trial?

The call for proposals closes in August; and it sounds as if your experience negotiating with the IRB would be very helpful to those in Canada who are preparing to slog their way through.

Thanks again,
Nick

I have not been diagnosed with any thyroid issues. I suspect I have some.

So this might be huge, actually? People who are hypothyroid experience lack of sweating, low body temperature, cognitive fog, fatigue, constipation, intolerance to cold.

So the thyroid is damaged by the collaterals running through and so underperforms its job and some of the symptoms lumped in with MS are actually ccsvi-related thyroid symptoms....

Here is a drawn image of the thyroid. Check out where the thyroid veins connect into the jugular, it's right there at the critical spot where the jugular meets the subclavian veins, ccsvi is often found at that juncture according to DrS:

http://www.clivir.com/pictures/thyroid/thyroid12.jpg

Cece wrote:I have not been diagnosed with any thyroid issues. I suspect I have some.

So this might be huge, actually? People who are hypothyroid experience lack of sweating, low body temperature, cognitive fog, fatigue, constipation, intolerance to cold.

So the thyroid is damaged by the collaterals running through and so underperforms its job and some of the symptoms lumped in with MS are actually ccsvi-related thyroid symptoms....

Here is a drawn image of the thyroid. Check out where the thyroid veins connect into the jugular, it's right there at the critical spot where the jugular meets the subclavian veins, ccsvi is often found at that juncture according to DrS:

http://www.clivir.com/pictures/thyroid/thyroid12.jpg

I was wondering since for hypothyroidism also saw possible symptom of weight gain, and that could not be the case for many people with MS I know that are certainly not overweight.

However, there is also the contrary to hypothyroidism, the hyperthyroidism, and indeed also some overlap to certain typical MS symptoms:
Major clinical signs include weight loss (often accompanied by an increased appetite), anxiety, intolerance to heat, hair loss, muscle aches, weakness, fatigue, hyperactivity, irritability, hypoglycemia, apathy, polyuria, polydipsia, delirium, tremor, pretibial myxedema, and sweating.

But should we all go in delirium and check out our thyroid function now? I want at least to check if my past blood tests included such a check, but it's probably more specific.

Thyroid function in multiple sclerosis
W. R. Kiessling*, K. W. Pflughaupt*, I. Haubitz ** H. G. Mertens*
1 *Neurologische Universitätsklinik, Würzburg, FRG 2 *Rechenzentrum der Universität, Würzburg, FRG
Acta Neurologica Scandinavica
Volume 62 Issue 4, Pages 255 - 258
Published Online: 29 Jan 2009

"Thyroid function was studied in 112 MS patients and 175 controls on the basis of T3, T4, T.B.G. and T.S.H. radioimmunoassays. In 33 MS patients the T.R.H. stimulation test was employed additionally. The MS patients had significantly increased T4 levels whereas T3 and T.S.H. were found to be significantly lower. No differences were found in the T.R.H.-stimulated T.S.H. response. The changes in thyroid function parameters were similar in different courses of MS and did not correlate with the degree of clinical disability. The results suggest that in MS the T4/T3 conversion might be reduced as seen in acute or chronic diseases."

Obviously our brain/spine damage is the worst of our issues, but if changing the blood flow through liberation immediately restores better functioning to the thyroid gland, that could contribute to some of the immediate improvements that are difficult to explain.

HaPpY 200,000 pOsTs Dr ScLaFaNi!!!!

So amidst all of the negative comments about CCSVI comes the announcement of a new venture by the MS Society. They have established a company to research DRUG treatments for MS. It's a wholly owned subsidiary of the MS Society. It screams bias and conflict of interest. Does this mean that investing in pharmaceutical research for MS will be tax deductible for those who profit from MS? Does it mean that the MS Society is promoting drug research and as it has always done, attacking ANYTHING that would mean that people might not take DMDs?

http://main.nationalmssociety.org/site/ ... D_homepage

How can their opinions about CCSVI be taken seriously now?

I think, that although 'MS' patients are primary in most minds, in the trenches of the average 'MS' Society chapter, the higher-ups in those organizations are propagating an official party line. That is, perhaps unintentionally, anti-patient, because they, of all people, no longer understand the needs of the 'MS'/CCSVI patient, or how we collectively wish to be treated. The evidence for this is in every communication from those organizations. Unfortunately, politicians and reporters, from every medium, take the easiest path, and ask the 'MS' society that seems the most appropriate. Of course there are also the neurologists with their own agendas.

But we must also take some of the blame, in that although we are learning not to allow them to speak on our behalf, they often do. Perhaps there should be a concerted campaign to divorce them from their most trusted position, until we are happier with what they are doing for us. All the me-too prevalence research seems carefully designed not to help a single patient. I think it is, because the medical community has not come to a consensus, even though parts of it have. I don't see any way of hurrying them up, other than reminding them of the death rates. If you are at all conservative, the status-quo is deemed safe. I do think among ourselves we need to establish non-status-quo ways of collectively funding and organizing the treatment of all with this condition. All. The newly minted organizations can help. But we need to be clear and specific and ask them for what we want. And ask them to announce to the media and governments that they, and not the 'MS' Societies, are the ones to go to, who do speak for us. And get them to do it.

Yes, BTW, happy 200,000.

LauraV wrote: How can their opinions about CCSVI be taken seriously now?

I couldn't have said it better myself.
I'm willing to bet that the 4% that is contributed by the pharmaceutical companies is also a big part of that 65% raised at special events. I believe some events are co-sponsored by drug companies. Can someone confirm this ?

It seems to me that some of the best innovations came out as a direct result of competition - and the 'item' got less expensive to boot. Perhaps it's time for NMSS to have some direct competition.

I think that a new society dedicated to treating, not just drugging, MS patients would be welcome. Not by just us MSers but by insurance companies as well. We need to get insurance companies involved. I'm pretty sure that them, like us, would rather keep the money than pay drug companies. Their involvement will be key to the CCSVI issue.

MSers (mostly paid by insurance) spend over $8 billion a year on drugs for MS in the U.S. alone. They could spend a small fraction of that on CCSVI treatment and keep the rest. DID YOU HEAR THAT INSURANCE COMPANIES, YOU CAN PUT BILLIONS OF DOLLARS IN YOUR POCKET EACH YEAR.
I find it hard to believe that you guys haven't figured that out yet and jumped on the band wagon. You should be the ones to donate to form a non-drug oriented society. You have the most to benefit financially.

It won't really be competition because they will be based on two different philosophies. One involves treatment and the other a lifelong dependency on drugs. One way you find the problem and fix it and the other way you just mask the symptoms with drugs, perhaps a little speculation and plenty of theories (mostly unprovable). One will benefit society the other will make you money. One will earn you respect the other will barely earn you the time of day. Feel free to add to the list !!!

What is it about people that are high up on the 'totem pole' that makes it so difficult for them to say "Ok, let's do it" ? There must be more than just being fearful of screwing up and getting sued. Any thoughts ?

Does our respective governments want us to be a liability or us to PAY TAXES. Come on politicians, do the math. It's a no brainier.

1eye wrote:Perhaps there should be a concerted campaign to divorce them from their most trusted position, until we are happier with what they are doing for us.

I think it's already started.

The "Reformed MS Society"

http://www.reformedms.org/

Not sure if they're registered as a charity or not or have formal designation as a Society. But they have been created for the very reason to challenge the MS Society's negativity towards CCSVI.

But it also doesn't hurt to publicize how the MS Society has created this profit/drug venture, or that so much of their charitable donations are used for administrative/fund raising and only about 1/2 actually go towards anything supportive of MSer's.

I'm all for continuing efforts to remove the leadership of the MS Society because we could still use the fundraising vehicle that they've created if we had a more supportive Board of Directors more receptive to ALL avenues of investigation. After all, in Canada, the government has sought and relied on the MS Society's position for input as to what to make of CCSVI. That means the MS Society has a lot of power. We need to use them to our advantage (as they were created to do), but we need to strive to remove those who are so resistant to this promising area of treatment. They should NOT be speaking on behalf of us or helping to shape policy decisions!

(Sorry, Dr. S., this seems completely off topic for your Q&A)

larmo wrote:We need to get insurance companies involved. I'm pretty sure that them, like us, would rather keep the money than pay drug companies. Their involvement will be key to the CCSVI issue.

MSers (mostly paid by insurance) spend over $8 billion a year on drugs for MS in the U.S. alone. They could spend a small fraction of that on CCSVI treatment and keep the rest. DID YOU HEAR THAT INSURANCE COMPANIES, YOU CAN PUT BILLIONS OF DOLLARS IN YOUR POCKET EACH YEAR.

Sadly, this is not the way insurance companies work! To them, those charges are INCOME because the charges allow them to increase premiums, their real income.

Insurance companies are paying $30,000 plus for CRABS for tens of thousands of people, yet governments like Israel where there are only 4,000 people with MS are able to negotiate prices that are one-third what US insurance companies routinely pay! Why? Because US insurance companies have no financial interest in reducing costs and as a consequence, make almost no effort to do so, MS drugs being a prime example of this.

Better wish for intervention by the Tooth Fairy, than insurance companies.