WeWillBeatMS in Brooklyn for Liberation 6/11/11

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

Postby 1eye » Fri Jun 17, 2011 1:12 pm

I don't know how you test for Hughes syndrome, but there's that, too.
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Postby EJC » Fri Jun 17, 2011 1:53 pm

Well who'd have thought it.

The most interesting part is being diagnosed pre procedure. Dr S will be asking some questions I imagine.

Also check for Pernicious Anema whilst you're running through a battery of tests.
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Postby cathyb » Fri Jun 17, 2011 3:29 pm

But the three days following the procedure my wife could barely keep up with me cause I felt so good as we went all over NYC from early morning until at least 9pm sometimes later.



Hi!

So, not to split hairs, but did Dr. S do the procedure even though he found no reflux and you have excellent veins?

Good luck, best wishes, positive thoughts, and yes, prayers too. :)
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Postby CD » Fri Jun 17, 2011 10:57 pm

cathyb wrote:
But the three days following the procedure my wife could barely keep up with me cause I felt so good as we went all over NYC from early morning until at least 9pm sometimes later.



Hi!

So, not to split hairs, but did Dr. S do the procedure even though he found no reflux and you have excellent veins?

Good luck, best wishes, positive thoughts, and yes, prayers too. :)



I think your happy high adrenaline was really kickin in to be able to go all over NYC the whole day and night. That is wonderful. I, too, believe in the positive effects of prayer, so I will never say never, in your case.

I do pray you find a minor cause for your symptoms so that you can get treated. I hope you don't have MS. Maybe this was God's will for the way you were to find out, with no blockages or reflux.

FWIW, I say have your B-12 checked. Not just the B-12 level but your MCV and your MMA on a blood test. The liver stores 2 to 3 years of B-12. You can show symptoms way before your B-12 level is low, even on B-12 pills. You may need butt shots of B-12.

Get all the testing you can.
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Postby marcstck » Sat Jun 18, 2011 9:37 pm

There are literally over 100 diseases that can be misdiagnosed as MS. It's generally accepted that approximately 10% of all patients diagnosed with MS are actually misdiagnosed. I've been involved with the NIH (National Institutes of Health) for the last 2+ years, under the auspices of a study designed to find people with clinically definite MS, because the researchers down in Bethesda were finding that so many of their research subjects were actually misdiagnosed (they were seeing rates of 10% to 15%) that it was ruining their research results.

Those who follow my blog know that my own MS diagnosis is seriously under question, with an extremely high likelihood that I don't actually have MS. Frustratingly, no acceptable alternative diagnosis has been able to be ascertained. I'm traveling back down to the NIH in two weeks for more tests and scanning by their new high-powered 7T MRI machine.

The point being that it's not all that unusual for patients with "MS" to later find out they don't have "MS", but rather any one of a wide range of different conditions.

Here's a link to a terrific paper on the differential diagnosis of MS, and the complexities involved with the diagnostic process:

http://msj.sagepub.com/content/14/9/1157

As for your positive Doppler results, well, we know that Doppler sonography is not 100% accurate. Operator error or operator bias (unintentional) can easily skew the results. This is one of the confounding components of the CCSVI investigatory puzzle.

BTW, Hughes syndrome is easily detected via a simple blood test.
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Postby blossom » Sun Jun 19, 2011 8:07 pm

lymes is very hard to diagnose but the fact that you were never tested is shameful on the neuro.'s part. although for yrs. and probably still most places they usually do that western blott test which standard and misses a lot. i would make sure they send your blood to wherever cheer is speaking of.

the thread that lymes nurse had on here said that although he definitely has lymes he also had ccsvi. soooo there is a lot to be figured out. lets hope soon.

in the meantime the miracle and all your family and friends praying for you sounds good to me and it is a comfort and help just knowing this.

the best to you on this journey.
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Postby hope410 » Sun Jun 19, 2011 8:34 pm

You must have been shocked! What could you have done beforehand in comparison to the Energizer bunny you were afterwards?

How much did it end up costing you then if everything was fine?
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Postby jenf » Tue Jun 21, 2011 4:31 am

Hi We Will,
I went into the venogram/angioplasty procedure thinking I had MS (diagnosed multiple times) only to discover that I didn't have CCSVI. Through the gentle prodding of other TIMS members, I went on for further testing. I signed up for the clinical trial at the National Institutes of Health in 2010... After 3 months they confimred my MS diagnosis. I thought I may be one of the select few who had MS but no stenosis. I started on Copaxone, even though I still had my doubts. When another family members started having neurological issues, her journey led her to an Infectious Disease doc in upstate NY who took one look at her test results and diagnosed her with Lyme Disease. That led me to the same doc, and the same diagnosis. I've started treatment and I've never looked back.

I guess my point is, some of us are still falling through the cracks. If the NIH couldn't diagnose my Lyme; how many others are out there? If you'd like the name of the Infectious Disease doc, pm me and I will provide you the name. I can't promise that will be your answer, and you still may have to find a Lyme Literate doc in your area. The Infectious Disease doc, while open minded, doesn't treat aggresively enough. But at least it's an option that may be covered under your insurance.
Jen
Last edited by jenf on Tue Jun 21, 2011 7:49 am, edited 1 time in total.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby Cece » Tue Jun 21, 2011 5:38 am

As a disease of exclusion, MS may benefit much from checking for CCSVI. If CCSVI is present, it is more likely to be MS; if CCSVI is absent, it is less likely....
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Postby 1eye » Tue Jun 21, 2011 6:34 am

Hey, there's an idea! Each patient could verbally advise their IR that they want all claims to be associated with a diagnosis of Lyme Disease. Or Hughe's Syndrome. Or both.
"Try - Just A Little Bit Harder" - Janis Joplin
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Postby bossman » Tue Jun 21, 2011 7:29 am

Be open and let GOD ALMIGHTY do his work. Rest in HIM and obtain a peace and calm.
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Postby EJC » Tue Jun 21, 2011 8:09 am

bossman wrote:Be open and let GOD ALMIGHTY do his work. Rest in HIM and obtain a peace and calm.


Is GOD fully up to speed on the Zamboni protocols and does he take Insurance?
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Postby drsclafani » Thu Jun 23, 2011 9:29 pm

cheerleader wrote:Hi We Will--
We did the Lyme route in the beginning with a local Lyme literate doctor and testing of blood at Igenex. Jeff was negative. You can go to a local doctor who will send your blood to the lab. Here's some links for info:
http://www.lymenet.org/
http://www.lymediseaseresource.com/Doctor.html
Lida Mattman, Ph.D. Nelson Medical Research Institute 11664 Martin Rd. Warren, MI 48093 Tel: 810-755-6430 Fax: 810-755-4511

What is puzzling about your case is that you showed reflux prior to the angio, then, once on the table...nothing. Hmmmmm. Positional reflux? Only when upright maybe? Something with the vertebrals? What was the position you were in when reflux was noted?

In any event, I am sorry for the nausea and all that went with the procedure, and then to have no answers...I know your faith is helping you deal with all of the stresses. It's been the cornerstone of Jeff and my journey since the beginning. THoughts and prayers to you and your family as you continue searching,
cheer


In order for reflux to be a positive finding, it must be seen in both supine and upright positions and it was so.
there are two types of reflux, up from the heart or down from the brain, both can reverse the flow.

what was puzzling in this case was that Not only did the venogram show NO stenoses, IVUS showed no abnormalities in the jugular veins too. There was a mild questionable abnormality but nothing like I usually see.

The case really is enigmatic.
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Postby drsclafani » Thu Jun 23, 2011 9:35 pm

EJC wrote:Well who'd have thought it.

The most interesting part is being diagnosed pre procedure. Dr S will be asking some questions I imagine.

Also check for Pernicious Anema whilst you're running through a battery of tests.


only zamboni has 100% correlation between ccsvi and ms

if i had a patient with a negative ultrasound, i would perform a venogram because absence of ccsvi on US in PwMS is so uncommon.

So i would always do a venogram if the US was positive.
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Postby MaggieMae » Tue Jul 12, 2011 10:19 am

Wewillbeatms,

I sent you a private message a couple of weeks ago about a lyme doctor. I see that you have never read it. Just wanted to let you know to check your private messages.
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