This Is MS Multiple Sclerosis Knowledge & Support Community

Yes I thought I was going to stump the panel when we first looked at my Jugs. They actually looked quite normal in the areas where most were found to have restriction. Thank God the Dake team is tough to stump. After close examination it was plain to see the small tight spot in the dural venous sinus area. Both my left and right sides had sharp over ninety degree bends where most normal people would have a nice S curve of the veins at this point. My right side looks like a pig’s tail. In one particular view you can actually see how it is pinched much like if you kinked a garden hose. It takes a lot of pictures at numerous angles to see where the problems may exist, and experts to find them. Your persistence will pay off. Take care, Mark

NYC Marc - Did Dr. Dake suggest omitting the MRV or have you already had that done? I was talking with a doc today about whether I could do some of the testing in my city here. I said unlikely at this point. Look forward to hearing your results.

OR Mark - So, was the CT venography the primary diagnosis tool used at Stanford for your testing?

Thanks for the info.
Donna

bibliotekaren wrote:NYC Marc - Did Dr. Dake suggest omitting the MRV or have you already had that done? I was talking with a doc today about whether I could do some of the testing in my city here. I said unlikely at this point. Look forward to hearing your results.

OR Mark - So, was the CT venography the primary diagnosis tool used at Stanford for your testing?

Thanks for the info.
Donna

Donna, Dr. Dake strongly advised that I get the CT scan in place of an MRV. He said MRV's are very "operator dependent", and that CT venography would be more reliable.

Dr. Dake spoke with my PCP to explain this, and he also spoke to the head radiologist at the hospital where I had the scans done.

As for results, the radiology report with my scans says that my jugulars are normal, but I'm sending the scans off to Dr. Dake to see what he makes of them...

Keep in mind, that I may very well not have MS. I currently have some of the best neurologic minds in the world scratching their heads at my test results and disease presentation. This after six years of being labeled "atypical PPMS"...

marcstck wrote:Dr. Dake strongly advised that I get the CT scan in place of an MRV. He said MRV's are very "operator dependent", and that CT venography would be more reliable.

I had the impression that MRVs and MRAs were similar to standard protocol runs on MRI tests. But what do I really know as I lay there with the gadolinium and valium swirling about?

This after six years of being labeled "atypical PPMS"...

Do you mind elaborating on what makes you "atypical" in presentation?

I am really interested to hear what Dr Dake says about the scans. I am strongly thinking of getting CT scans myself, and do not want them done incorrectly.

Hi Marc,

I hope the NIH docs can get to the bottom of your disease so you can have some peace and be on the road to recovery. Please let us know what Dr. Dake says.

bibliotekaren wrote:

This after six years of being labeled "atypical PPMS"...

Do you mind elaborating on what makes you "atypical" in presentation?

Well, where to start? Since the date of my diagnosis, my MRIs have remained completely unchanged and have shown only one significant lesion, a large one at the base of my brainstem, at the Cervicomedullary Junction. This lesion has never enhanced, and has not changed in appearance on the MRIs in the 6 1/2 years since my diagnosis. Yet, at that time I presented with only a slight limp in my right leg, and today my right side is for all intents and purposes useless, due to profound weakness and spasticity. My left side is also beginning to weaken.

My LP results have always been negative for O-bands, and I haven't shown any signs of optic neuritis. I have much endocrine involvement, including low testosterone and Hashimoto's thyroiditis. Unlike "typical" PPMS patients, I am sensitive to steroids.

In 1997, I was diagnosed with possible discoid lupus (a form of lupus that only affects the skin), but that diagnosis could never be confirmed. Whatever it was burned itself out by 2001, and I started having neurologic problems two years later.

The doctors at the NIH say that there is definitely a disconnect between my clinical presentation and my MRI imaging. Before being told my case history, their radiologists assumed I had suffered an attack of transverse myelitis six and half years ago, had accumulated disability at that time, and have been stable since. When told that, instead, I have suffered a slow steady progression of disability, they were left scratching their heads.

The consensus among most of the doctors who have examined me recently is that this most likely is not MS, but no one has yet been able to put a finger on a suitable alternative diagnosis.

I head back down to the NIH at the end of August, for further testing...

.

Lyon wrote:Thanks for the info Marc. I think that's the most specific information I've read about your situation yet!

I'm not sure of your opinions and not to offend your sensibilities, but have you spent much time investigating the other diseases that are considered autoimmune to see if descriptions of any of the others sets off any alarms?
Bob

Bob, I don't think I have any sensitivities left to offend, at least when it comes to discussing this malady. I'm open to any and all suggestions as to what might be ailing me.

I have investigated many of the other "autoimmune" conditions, as have many of my physicians. I'm trying to chase down every possible avenue of thought. I even went to see one of the world's leading specialists on mitochondrial disorders last week, thinking that perhaps it might be worthwhile to bark up that tree. No dice, he was sure that what I was suffering from was not mitochondrial, but also felt it not very likely to be MS, either.

I've been tested for the hereditary leukodystrophies, neuro myelitis optica, Hughes syndrome, Sjogren's, ALS, and Lyme disease. I've been seen by some of the top neurologists here in NYC, as well as those at Johns Hopkins, and now at the NIH. I'm more frustrated than a toothless man at a corn on the cob festival...

marcstck wrote: I'm more frustrated than a toothless man at a corn on the cob festival...

I'm going to be quoting that. Where do I send the royalty checks?
Nobody can accuse you of a lack of initiative, Marc. Hoping Dake sees something he can bring to light...
cheer

Marc,

Thanks for elaborating. Hope something pans out for you with NIH and/or CCSVI. Wish you the best...

Donna

marc - there was a discussion recently on ms look alike deseases CIPD and one involing the PNS. here is the link if you missed it.

http://www.thisisms.com/ftopict-7757.html

regardless, wishing your the best

holly

P.S. Do you pace in your wheel chair? I am noticing that i have started to do so especially while i am on the phone.

peekaboo wrote:marc - there was a discussion recently on ms look alike deseases CIPD and one involing the PNS. here is the link if you missed it.

http://www.thisisms.com/ftopict-7757.html

regardless, wishing your the best

holly

P.S. Do you pace in your wheel chair? I am noticing that i have started to do so especially while i am on the phone.

Thanks for the thought, but EMG testing has shown that my peripheral nervous system has remained unaffected. Seems that all of my problems are due to the one big lesion right at the base of my brainstem. Most of the medical experts agree that even though my imaging has not changed, that must be the location of all of my ongoing nerve degeneration (based on symptoms and clinical presentation)...