This Is MS Multiple Sclerosis Knowledge & Support Community

Hi California,
Yes, twice... the second test being the reliable test. They were both negative. But now thinking in terms of an elevated white cell count, maybe this in an infection after all. That makes some of the other research (Research Finds Over 70% Of People With MS Have Cpn Infection) and subsequent treatment (Wheldon Protocol) makes more sense. Maybe I fit into a different category of MS'ers... or it's something that mimics MS, but instead is some rouge pathogen reeking havoc on my immune system. I've contacted NIH for some further testing. We'll see what happens...

lilsis wrote:had you ever had ultrasound performed? it appears this is more important than mrv. no stenosis, but was there any mention of the valves in the internal jugulars? competent, incompetent, present at all? this may provide a clue, and what about the azygos vein? ccsvi is not only caused by problems with the internal jugulars....

I thought of same question as Lilsis: did you already do an eco-color-doppler?
I have heard that pathologic valve problems in eg jugular veins are sometimes not visible with MRV (and can stimes only be seen with doppler).

Steffi

I had the venogram done, which the standard of CCSVI diagnosis, and the last step used by every single doc diagnosing and treating CCSVI. It's a catheter inserted into the leg going through the body, where dye is injected and the veins are x-rayed. The doc did not detect any stenosis, and was familiar with the Zamboni protocol. I have complete faith that he was competent and did the appropriate tests.

I'll have to look into this further now. Without a stenosis and without a concrete diagnosis from the hospital tests, I'm left scratching my head. I'm going to pursue this through the NIH; they have an active trial for problem children.

An infection makes more and more sense now that I think about it. I may end up finding out I have something other than MS after all... who knows...

Jen, i am only asking because my diagnosis is not clear either. We are both newly diagnosed and you should know that a firm MS diag may come many years after dx or never!
In my case there were 2 small lesions found in my cervical spine, no brains lesions, csf was indicative (oligoclonal bands 1,2) blah blah...
They also found antinuclear antibodies strongly positive 1:320 which means autoimmunity is in process.
They somehow ruled out Lupus cause it's very rare for it to manifest with neurological symptoms right from the start, didn't tell me about Lyme and came up to the conclusion that we should wait and see what happens next. A reumatologist told me that ANAs may mean arthritis but again, wait and see was her approach.

Having said that, i urge you not to be dissapointed so fast cause you are obviously not a typical MS case. So, maybe stenosis was not found because of this. It's a limbo to say the least. I hope it gets clear for both of us soon enough.

The way i see it, you should go on and try to rule out everything else. Don't trust them. MS "specialists" are often biased towards an ms diagnosis.

Hi CostumeNational,
No, I appreciate the inquiry... It's made me look back and reevaluate my current path. I am not invested in MS as a diagnosis... Funny that I had "forgotten" the resident during my initial hospital stay/testing was not convinced I had MS, but I just thought she was a knucklehead, so I moved on to other Neurologists. Once hearing from a few of them that I had MS, I blindly went along with that as a diagnosis. Now, looking back, maybe I'm the knucklehead! Since I've fallen into the "not really sure" category, I've decided to focus my efforts on getting a concrete diagnosis.

The fact that I've been symptomatic since my inclined bed therapy stint, despite taking LDN religiously, leads me to believe there may be some other issue that's been missed. If this is the case though, it also means that Buffalo's results will be skewed. I participated in their trial under the assumption that what I was dealing with was Multiple Sclerosis. Now, if there's a chance this isn't... it may explain why their numbers were so different than Zamboni's.

And the plot thickens....

Jen,
You may have just had the best outcome, no MS. It sounds like you are ready to investigate your illness further and I hope it is not MS and something easily treated!
Are you going to keep Buffalo posted about this turn of events?
Best of luck to you going forward!

I wish you well Jen,

May you find the truth!

Hi Magoo,
I considered it... but then decided it was best to find out for sure what is happening to me first. If NIH determines what I'm afflicted with is not MS, then I absolutely will contact Buffalo. I think until I know for sure though, it's pointless to contact them. Only one doctor (out of 5) did not think I had MS; the rest did. The one thing I've come to realize though is that most of these docs want to fit you into a category and pump you full of drugs; neither of which interests me! This couldn't have come at a better time though, my Neuro wants me to start a CRAB. Now I will DEFINITELY wait until I'm sure what I'm dealing with...

Best of luck to you. I hope your answers come quickly!

I've been thinking since my test that I too may have something other than ms. I mean there are 40 lesions on the mri but ccsvi was unclear and they may have found a membrane. the thing is I live in family that is an odd cluster of immune problems. My brother died of lymphatic cancer 10 years back, my sister has bad parkinsons and is very disabled, it's just hard to swallow that my problem isn't immune based too.

Jen, sorry about the "disappointing" venogram results, but keep in mind that over 45% of clinically definite MS patients in the Buffalo study tested negative for CCSVI, so it clearly is not the universal cause of all MS.

Like you, I've been told by numerous radiologists that MRV's are notoriously subject to false positives and artifacting. The NIH refuses to use them for diagnostic purposes.

I had a venogram done this week also, and vascular abnormalities were found, which unfortunately couldn't be treated via balloon, and the Doc and I both agreed that stenting is not the way to go at this point.

I should have a post up on my blog giving full details of my procedure and the results sometime later today.

Giving your less than clear diagnosis, it is certainly worth pursuing further opinions. If you have trouble getting into the NIH study (they don't take everybody, especially people outside of their immediate geographic area. They agreed to see me because here Calabresi at Johns Hopkins ultimately came to the conclusion that I did not have MS). I'd suggest you make an appointment at Johns Hopkins to see Dr. Peter Calabresi. You might also want to come down to New York City to be seen by Dr. Saud Sadiq.

Hey Marc,
The only problem with that is I participated in Buffalo's trial! That said, now I'm questioning my diagnosis. I received this diagnosis by some of the top docs in NY, but now looking back to my hospital records, it's all very unclear.

I spoke with a nurse from NIH last Friday, and she advised me they do their "reviews" on Mondays for prospective candidates. I'll contact Calabresi anyway in the event I don't get into their study.

I really do think that as time goes on with the CCSVI research that they will discover several "subsets" of MS, or conditions that mimics those of MS, but that are caused by various other conditions; ie the EBV link, the Cpn issue, etc. There are just too many variables that bring us all together under the MS umbrella.

I hope they find an answer to your issues Marc. It's go to be maddening being this far along only to have the "ol' bait and switch" pulled on you. I give you a lot of credit for keeping such a great attitude through all of this...

Hi Jen,

I've been off the forum for the past month and someone pointed me to your post. I'm sorry you found yourself in the same situation I did. As someone noted above, I was told by Stanford I had 90% stenosis in my lower jugular veins but an IR went in 2 months later with the venogram and it was gone. I definitely understand your disappointment. Mine was tremendous too. So good luck finding out the answer to your problems. Here is hoping you have something more treatable than MS--antiobiotics as the cure would be nice!

I'm pretty sure I have MS. I was diagnosed with 9 brain lesions and some black holes. The VEP in one eye was slightly below normal (and much slower than the other eye). And while I did not have oligoclonal bands I did have a high IgG index and high IgG synthesis in my spinal fluid (also a marker for MS).

*I have to add, though, that my venogram and the MRV did show some stenosis in the upper left jugular. The IR said it would need a stent and we both decided balloons only.

prof8 wrote:Hi Jen,

I've been off the forum for the past month and someone pointed me to your post. I'm sorry you found yourself in the same situation I did. As someone noted above, I was told by Stanford I had 90% stenosis in my lower jugular veins but an IR went in 2 months later with the venogram and it was gone. I definitely understand your disappointment. Mine was tremendous too. So good luck finding out the answer to your problems. Here is hoping you have something more treatable than MS--antiobiotics as the cure would be nice!

I'm pretty sure I have MS. I was diagnosed with 9 brain lesions and some black holes. The VEP in one eye was slightly below normal (and much slower than the other eye). And while I did not have oligoclonal bands I did have a high IgG index and high IgG synthesis in my spinal fluid (also a marker for MS).

*I have to add, though, that my venogram and the MRV did show some stenosis in the upper left jugular. The IR said it would need a stent and we both decided balloons only.

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?

Hi Prof,
After a follow-up visit with my Neurologist last Friday, I am back to square one. A recent MRI showed more lesions, which was not unexpected since I've been experiencing new symptoms since December. When I pressed him about my diagnosis, he said, "Could this be a Lyme infection? Sure. But you still need to consider starting DMD's". Really? Because I'm pretty sure they don't treat Lyme or any other infection with a DMD. But looking over my hospital records, I had an abnormal VEP, one band in my CSF, and some non-specific lesions. I suspect that may have been because I was early on in the disease.

The research at Vanderbilt also leads me to believe that there will be more than one avenue that introduces us all to MS. Unfortunately, I suspect my MS diagnosis to be correct, especially in light of my most recent MRI. I was also symptomatic when I had the venogram done, so if stenosis correlates with exacerbation's, I am excluded entirely from the CCSVI category. I was EXTREMELY disappointed when I found out there was no stenosis, as my latest symptoms have me climbing the wall. On the other hand, I have no regrets as I can now move on and explore other avenues.