This Is MS Multiple Sclerosis Community: Knowledge & Support

Here is a comment I found extremely interesting from Dr. Mark Haacke during the panel discussion at the Albany vascular roundtable conference…

“We’ve also started to look at this CSF flow which is probably very important in understanding the potential role of normal pressure hydrocephalus as it might relate to compression of veins in MS patients. Because if venous blood is not flowing out and arterial blood is flowing in, something else has to leave the brain and it’s probably the CSF.”

This comment is very interesting because I was diagnosed with idopathic syringomyelia from my first MRI OCT 2009. I don't want to hang everything on the CCSVI connection, but it seems possible. The CCSVI either caused the condition or exacerbated a potential to develop this condition. More connections falling in place....connecting the dots.

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It's a paradigm shift

Man, I'm glad you posted this. I caught the same thing when I saw it, because I too was diagnosed with idiopathic syringomyelia on my first MRI 3 years ago. I've even been to the chiari institute to rule out any known causes. I've been thinking about this angle for quite some time, I'm glad there's someone else to work on it with.

Have your googled syringomyelia and MS? There's a couple studies. One showed I think 4.5% of MS patients with syringomyelia. Where is your syrinx? Mine is T7-T9.

Rokkit,

Here is what that very first MRI in OCT 2009 showed....

Linear signal abnormality within cervical spinal cord at C6 vertebral body level measuring approximately 7 mm in length. Consistent with syringomyelia.

Thoracic spinal cord from lower T3 through lower T5 vertebral body levels approximately 5 cm in length. Consistent with syringomyelia.

Lower thoracic spinal cord from upper T8 through mid T10 vertebral body levels measuring approximately 5.8 cm in length. Consistent with syringomyelia.

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It's a paradigm shift

Interesting. Your T8-T10 sounds like mine. Do you have MS lesions? Have you been diagnosed with MS? What kind?

I don't have any MS lesions. My CSF is positive for MS. I haven't been diagnosed with MS but I have what looks like PPMS. My spine was imaged a year after the first time and the syrinx hadn't changed. That was 2 years ago.

Rokkit,

I have not yet received a diagnosis of MS since I have not developed white matter lesions. Symptoms accumulated over a few months beginning in AUG 2009. It started with a very odd warm sensation at the back of the throat in the region of the soft palate. A month later slight numbness on tip of index finger and thumb developed on the right hand. Very low tinnitus in left ear only started at this time. I began to experience a dull ache at the clavicle on the right side with occasional pain. My feet started feeling unusually cold and slightly numb on the bottom. Focused attention and concentration difficulties then developed. I had none of these symptoms prior to AUG 2009.

The MRI from OCT 2009 also noted....Minimal gliosis in periventricular deep white matter of both parietal lobes. This may represent chronic ischemic changes secondary to microvascular disease.

I suppose this could possibly be CIS. The neurologist told me that he was a neurologist and not a vascular doctor. My first appointment with him was in DEC 2009 at which time I presented him with several CCSVI articles. Again, I have not yet been diagnosed with MS. CCSVI seems likely to me.

Here is a list of symptoms that developed over several months with MRV/Doppler Results…..

Unusually warm sensation in the back of the mouth (soft palate area).
The sensation is like I’ve just taken a drink of a warm beverage (very odd). Started EARLY AUG 2009

A dull ache in upper right chest area in the region of the subclavian. Sporadic pain at the clavicle and a couple inches lower on the right side. Started LATE AUG 2009

Tinnitus that is low and in the left ear only for a couple days, louder the next couple days, and in both ears for several days (I can make it louder and in both ears by putting my chin to my chest). Started EARLY SEP 2009 (tinnitus is constant)

Numbness noted on right hand (index finger & thumb) Occasionally experienced throughout the right hand (a couple times this month in the forearm).

Started EARLY SEP 2009
Bottoms of my feet became cold or a little numb.
Started MID OCT 2009
This year I have developed occasional pins & needle sensations.
Bladder problems developed with no explanations found. Prostate exam noted good condition.

Started LATE OCT 2009
Slightly light-headed and dizzy.

Started NOV 2009
Beginning in NOV 2009 I experienced a fairly severe torso constriction about once or twice a month for 3 or 4 months. The torso constriction sensation would only last about 15 to 20 minutes. Also, I experienced a sensation of having a ball of spider webs on my head or face. This too started in NOV 2009, it occurred about once or twice a month for 2 or 3 months. The spider web sensation would last only around 5 or 10 minutes. These disturbing sensations never occurred simultaneously.

Stiff and weak feeling legs (comes & goes) more so on the right side.
Calf muscles feel stiff at times and tensed for no reason (more on the right side). Started NOV 2009

Thinking not clear, processing information seems altered, easily overwhelmed with too much mental activity requiring extended attention and concentration. Reading and group conversations are where this really shows up. Started DEC 2009

Exhausted (used to only need 7.5 hours sleep and felt rested and energized) started needing to sleep 10-12 hours and would wake up feeling tired. Started DEC 2009

Hyper-alert and hyper-sensitive to some sounds (a blow dryer) & smells on occasion (very odd). First noticed JAN 2010

A sense of not sweating normally (head didn't seem to sweat normally).
Wouldn’t even get oily around the edges of my nose or on my forehead.
This became very obvious this past summer with 85 F sunny weather.
Really noticed this starting in MAY 2010

CCSVI Testing JUNE 2010

CCSVI MRV (June 2010)
Right side cerebral drainage is dominant (superior sagittal, transverse, sigmoid sinuses and right IJV dominant).
Little to no flow in the left IJV. Facial vein on the left and the vertebral plexus on the left appears to predominately drain the head and neck on this side. The morphology of the facial vein on the left changes from ellipsoid to flattened, to pinpoint at C6.

The morphology of the right IJV takes on a flattened appearance from the level of C6 through C7 posterior to the sternocleidomastoid muscle.

CCSVI MRI (JUNE 2010) The MRI from the CCSVI testing noted no T1 hypointense lesions. Post contrast imaging reveals no enhancing lesions (it did note Iron accumulation and cerebral volume reduction consistent with MS participants).

The report mentions...

In the cerebral hemispheres, there are subtle areas of T2 hyperintensity in the white matter off the posterior horns and atria of the lateral ventricles bilaterally. There is a very subtle linear T2 hyperintense lesion off the superior border of the right lateral ventricle on axial FLAIR image #30. It corresponds with a very small draining vein.

CCSVI Doppler (JUNE 2010) Septum and stenosis in left IJV (0 and 90 degrees) Flap and stenosis in right IJV (at 90 degrees) Only B-Mode abnormalities were reported.

Maybe a case of CIS due to CCSVI at this point. I started supplements and IBT in JAN 2010.

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It's a paradigm shift

One more interesting piece of this puzzle Rokkit.

In AUG 2010 my PCP found that my testosterone level was at 284 ng/dL in a range from 280 to 800 ng/dL. He prescribed T injections every couple of weeks and the level in around 600 ng/dL now. I think the CCSVI possibly disrupted the normal T production and signaling.

The T has helped with my energy, slight dizziness, and focused attention and concentration problems. The T is possibly working as a vasodilator and helping rev up my system a little. It is supposed to provide some neuroprotective effects also, I believe. Fix the flow and see what's left to treat, in my opinion.

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It's a paradigm shift