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I think this really highlights so well why some doctors are so cautious to get "on board" with the CCSVI theory without further evidence, they don't want to encourage "false hope".

I think this must feel so deeply disappointing, to come so close, to feel such optimism, only to be disappointed when no stenoses are even found. The other disappointing possibility, like Kamizake, would be to find stenoses that can't be fixed. Such difficult situations. Or Rici, who gets fixed up, only to have it result in an even worse situation.

I really feel for you. It must be so frustrating and disappointing to have such high hope that is dashed. I think we can all relate to that. I'm so sorry this happened for you.

Jen:

Sorry for the disappointing results.

You mentioned maybe getting into a study at NIH. I called them at one point, offering myself up for one of their trials. You may already be aware of this, but it seems they like to get people before they have started one of the DMDs. I think they want to be able to track MS patients, and like to start with a baseline. It sounds like you haven't started one of the DMDs yet, so they would probably be glad to have you.

Hi Patientx,
Yes, I'm hopeful that they will accept me into a trial. I have no idea what to think anymore. I know NIH reviews records on Mondays, so I'm hopeful I will hear from them soon.

Since I don't fit the CCSVI category, I'm looking into the infection theory. I truly believe there will be more that one cause/factor that brings us all to the doorstep of MS. If this is MS, there is a reason it happened. I am DETERMINED to find out what exactly that was. Call me naive, but I can't just sit back and accept the fact that the only thing I can do is start taking DMD's.

Once I received my diagnosis last year, I immediately changed my diet, adopting the Swank approach. Then, after a brief stint with the Inclined Bed Therapy, my feet went numb. Now several months later, Transverse Myelitis have progressed into my hands and face. I don't want to be foolish and NOT start the DMD's; but I also want to know beyond certainty what I'm dealing with. If there's nothing I can do, there's nothing I can do. I just refuse to leave any stone unturned....

Hi jenf,
I am posting for the first time but have been reading this website for sometime and wondered if you could answer a question on your MRV.

Did they find collaterals having developed above the IJ blockage and if so where were they draining to? The presence of collaterals would be a strong indicator of a true blockage rather than other reasons that may cause a temporary blockage of the IJV ( postural, ? expiratory phase of respiration ). Also was the MRV done on a 1.5T machine or a 3.0T?

Best of luck with NIH. Your raised WBC's in the CSF would seem to warrant further workup. ? EBV early antigen antibody if these were lymphocytes and bacterial cultures if these were leucocytes and perhaps fungal workup and not to omit Western Blot on the CSF for Lyme amongst others and CPN.. I'm sure they did all that.

Thanks.

Hi Persistent,
The MRV showed a "possible" stenosis in the lower right jugular. Only after the venogram was it discovered that it was a phantom imaage. The Interventional Radiologist explained that this happens often when I met with him. In terms of your questions regarding the collaterals, I honestly have no idea. All I know is the doc said he checked my jugulars and arzgous vein, and they were all clear; no stenosis. I didn't press any further, as I felt he was thorough and quite competent. I'm not sure which machine was used, but I went to NYU because I had learned they had one of the best machines around.

One would think the elevated WBC would warrant further investigation. Not according to my Neuro... or should I say my ex-Neuro! I was referred to another Neuro who takes the diagnosis a little more seriously, and I'm hopeful he'll run some more tests. The appt isn't until May, so now it's a waiting game.

I've never had EBV, so I am excluded from that category as well. I've had two Lyme tests done; the latter being the more reliable of the two. Both were negative. I'm still not convinced it's not an infection though. If NIH doesn't come through, at least I have a back-up plan now!!

You may have hit the nail on the head California. Lyme is very prevalent in NY. Wouldn't hurt to get a test done and if you have had one do it again.

Val

Hi Eric,
I completely agree.... and had I known then what I know now, I would have been much more cautious in my approach. However, I don't think I would have been easily dissuaded. I was DETERMINED to find out and get the treatment if I in fact had stenosis. It's hard to get in the way of a woman on a mission. Nothing could have stopped me... seriously. Was I disappointed? You bet... but I wouldn't change a thing. What it's done for me is open my eyes to all the other possibilities that I had overlooked. MS is so different in everyone affected by it... it only stands to reason that there are different factors that cause this process to begin with. It would explain why some respond to certain treatments and not others.

Even though my Lyme tests have come back negative, the docs at Vanderbilt have identified another bacteria that may in fact be another causation factor in the disease process. As long as I have options, I'm still optimistic. It takes A LOT to keep this girl down!!!

Salvatore24 wrote:
Prof, from the time that the 90% stenosis was found, until you had the venogram in which the stenosis was "gone" were your symptoms any worse or better?

No, my symptoms were exactly the same from the time of MRV to time of venogram.

Hi Jenf, you said in an earlier post you would look at anything.
My sister was diagnosed with MS 20 years ago and accepted that DX. When I started to develop symptoms too and got my first brain lesion in early 2008, the MS label was stuck on me too as we share the same Neuro.

After two years of heavy fatigue and daytime sleeping, this week I finally got another DX of Hereditary Porphyria, which makes a lot more sense to me than MS. It also causes lesions. My sister is highly chemically sensitive (and has never taken a MS drug thank goodness), I never thought that I was chemically sensitive, but I have a son who is.

We have now worked out I developed the first lesion two weeks after a dental anesthetic, and the second episode of neurological symptoms in January was due to another dental anesthetic in December 2009.

My sister is a hairdresser, and is exposed every day to chemicals, hence she has more lesions than I do and developed the illness much earlier. High iron levels in our bodies are toxic to us also. My sister was also injected with iron weekly for anemia as a teenager. Her cup ranneth over early.

I also react to contraceptive pills/hormones, sulphites and alcohol.

Just thought I'd throw that in as an alternative.
If we were misdiagnosed, then there must be others out there too.
Other Porphs I've spoken to report they have family members diagnosed with MS.

I am about to go through the tests to find out which Porphyria I have and then the rest of my family will be genetically tested also. 50% pass down rate. Most doctors do not look for this hereditary disease as it is considered rare 1:25,000, but in a French genetic study of blood donors, the prevalence appears to be 1:1600, very similar to MS prevalence.

All the best and hope you find out what ails you.

Cheers............

Hi Bethr,
I can't imagine what that must have been like... to go all those years misdiagnosed. Thank goodness they finally figured it out for both you and your sister!

I was fortunate enough to get accepted in a study looking at people who have received a questionable MS diagnosis. I'll be happy to find out for sure what I'm dealing with... whatever it ends up being!

Jenf, I hate to stir this up again for you, but I found this comment by Dr. Sclafani very interesting:

I have also found that sometimes there is a narrowing in the lower area where the valve should be. I note that sometimes the catheter passes it in a way the open the valves termporarily at which time flow is brisk. Without the catheter, or with it against the wall in a different way, flow is slower and the collaterals are better seen.

Since your MRV showed a possible lower stenosis, what do you think? I don't know how you'd go about pursuing this but it seems like a possible explanation.

keep in mind that over 45% of clinically definite MS patients in the Buffalo study tested negative for CCSVI

I know that's the statistic from the BNAC press release, but I'm still holding out hope that a different statistic published in a Canadian Press article is accurate. Here's the quote from the article that lists the statistic:

The researchers also found fewer cases of CCSVI in patients who had experienced a single MS attack, called clinically isolated syndrome, compared to those with more advanced symptoms of the disease -38 per cent versus about 80 per cent.

I'm hoping that 80% is the figure for CDMS in the BNAC study. The author of the above quote said she got the 80% figure directly from BNAC's Dr. Z. in an interview she did with him.

I guess we'll find out the real numbers at the April Neurology meeting.

Of course even if 80% is accurate, that still leaves 20% of people with CDMS with no CCSVI found.

Mary Ann

RRMS, DX 6/09[/quote]