Hello forum members. I’ve lurked here for some time but I’m finally going to post my thoughts on MS to see if we can generate some ideas. I’m a 25 year old computer programmer and thus have no medical background whatsoever. I’ve had undiagnosed what looks like primary progressive MS for the last three years and it’s very aggressive. I have no visible lesions on any of my MRIs which is not uncommon for PPMS. My forearms are atrophying and I’m losing the dexterity of my fingers so I won’t be able to work for much longer. My legs are also weak and stiff so I won’t be walking for much longer either. I’ve also had a few episodes of sleep apnea, floaters and flashing lights in both eyes, and numbness in my hands and feet. Everything is bilateral.
I have had an email correspondence with Dr. Michael Flanagan and Dr. Franz Schelling. These two men are beast. Their talents, courage, compassion, and generosity are an inspiration and source of hope. Dr. David Harshfield graciously reviewed my MRI scans as have Dr. Flanagan and Dr. Schelling. I believe these three doctors have already solved huge swaths of the MS puzzle and I also believe my case in particular bears out this belief. I’m going to present my thoughts in the form of a timeline of my case with discussion where necessary.July 2000
At the age of 13, I was walking down a water slide at a water park and slipped on the dip at the end of the slide designed to give you a boost of speed before getting launched into the water below. My body came down at an angle such that the point of impact was around the tail end of the occipital bone or slightly below. The blow knocked me unconscious for a few minutes initially. I regained consciousness for about 20 seconds before drifting off again. When I came to, I was already at the hospital. All told, I must have been unconscious for at least 15 minutes. When I got to a bed, I slept for 24 hours straight. For the next month, I would experience an intense, roughly one second long head pain whenever my head would cross the 45 degree bisection when moving from an upright to a prone position and vice-versa. The only way that I could avoid this pain was to change posture very slowly. This is interesting considering what we now know about encephalic venous drainage routes depending on posture. The pain was pressure-like and felt like the sides of my head were getting pushed apart.
Dr. David Harshfield has postulated that cervico-occipital trauma causes the chiari 0 anatomy (cerebellar ectopia) which causes interstitial edema, secondary venocongestion, and ultimately a loss of intracranial compliance by obstructing CSF flow. You can read more about the hypothesis here:http://coimed.org/Documents/Editorial%2 ... 202010.doc
Dr. Harshfield diagnosed a Chiari 0 with indirect evidence of raised intracranial pressure, hypermobile mid c-spine, grade 1 spondylolisthesis at L5/S1, increase in the number of Virchow-Robin spaces, deformation of Meckel’s cave on the right side, and an increase in the size of the right temporal horn.
Dr. Flanagan has argued the role of congenital and acquired degenerative changes of the spine, especially the upper cervical spine, in neurodegenerative diseases since the 1980s.August 2000
8th grade marked the start of my very first health problems. It started with a loss of appetite in the mornings which continues to this day. Basically, I would wake up and my stomach would feel unsteady and I wouldn’t be hungry for another 3 or 4 hours. This is a huge departure from before the trauma where I ate breakfast every morning and was starving basically within a few minutes of waking.Circa March 2001
I begin to hear a bizarre “fizzing” noise at the base of my skull that is associated with stomach activity. Several months prior to discovering the work of Dr. Harshfield, I had already been eyeing the head injury with great suspicion after a lucky break. One day at work during a short meeting, I heard that fizzing noise and I decided to Google it when I got home. I did, and I found this thread over on medhelp.org: http://www.medhelp.org/posts/Neurology/ ... 709?page=1
. I read through the posts and was stunned. Over 250 people were describing the exact same phenomenon. More importantly, quite a few of these people have neurological problems that include chronic headaches/migraines, Chiari malformations, MS, idiopathic intracranial hypertension, and other unexplained neurological problems. Once I realized that there might be something to this, I began to think back to try to remember when I started hearing the noise. After pinning it to just eight or so months after the trauma, I immediately made the connection. Is it really just a coincidence that a seemingly perfectly healthy 14 year old should suddenly develop a form of tinnitus 8 months after head/neck trauma? Dr. Harshfield is hypothesizing that the above conditions and many others may all be related by CSF flow problems that could be induced by acquired cerebellar ectopia. I like to check on the thread from time to time to see what new people are saying and one of the more recent posters noticed the sound starting after a bout of meningitis. Meningitis can cause bleeding and scaring in the subarachnoid space and basal cisterns which can obstruct CSF flow. Seems that this noise is a consequence of disturbed CSF flow and there are many ways for that to happen.July 2003
I fracture my right tibia in a soccer match and acquire a .75 inch leg length discrepancy due to an incompetent doctor who let it heal crooked.June 2004
During the summer going into my senior year of high school, I helped a car mechanic move his shop. During one of those days, I moved very heavy boxes for maybe three or four hours straight. Like clockwork, I bent over, held my breath, and lifted a heavy box, carried it and then set it back down. In retrospect, this was pretty stupid for anyone to do. I was repeatedly performing strong valsalva-like maneuvers. This day stands out in my memory due to the number of (at that time) bizarre things that happened:
1. I developed my first hemorrhoid.
2. That night, I noticed three cherry angiomas on my trunk in the mirror, all of which are proximal to stenoses that would later be found in my azygos.
3. In the midst of the work, I had to relieve myself and when I did, I was unable to start urination even though my bladder was full.
4. Totally baffled by this since I was 17 and never had any bladder issues before, I strained to try to get the urine flowing and this triggered an extremely intense pain in the perineum. The pain is a like a burning muscle cramp and I have experienced it quite a few times since then. Straining too hard seems to trigger it.
5. After getting home, I was sitting on the toilet and noticed that the bottoms of both my feet were “vibrating” in waves. Indeed, I felt tingly all over. The tinglyness was gone the next day but the vibration/trembling feeling never went away. It is not constant, but I feel it intermittently throughout the day, but I especially notice it while on the toilet and it could be related to straining.
The most straight forward explanation for these signs and symptoms is provided by Dr. Schelling’s work. The increased pressure in the portal vein caused the hemorrhoid. The cherry angiomas in my opinion, because of the timing and their locations, provide an interesting insight into the disease process. Is there any other explanation for them other than that they were caused by violent venous reflux within the azygos and its branch vessels and ultimately to tiny vessels at the surface of the skin? Indeed from my CCSVI procedure report, “The azygos vein had a stenosis that was about 4cm in length and about 50% by diameter located about 10cm from the confluence between the azygos vein and the superior vena cava…there was also a stenosis in the azygos arch, likely related to a valve, that was about 50% by diameter…prior to angioplasty, there was extensive reflux into branch vessels of the azygos vein”. The largest angioma is near the azygos arch and the other two are about 10 cm south of it.
In my opinion, the abnormally strong reflux reached the skin’s surface with enough force to cause hemorrhages. They appeared near the stenoses because that is where the reflux would be most intense. The largest one is proximal to the arch of the azygos while the other two are near the lower 4cm stenosis. As for the acute urinary retention, this was caused by tearing into the lateral corticospinal tracts of the cord, precisely where the denticulate ligaments attach. Per Schelling, the blood refluxes into the epidural space, distending veins, displacing CSF, which in turn displaces the spinal cord vertically or forwards and backwards within the sheath straining the denticulate ligament attachment points. An acute lesion in these tracts can cause acute bladder retention due to bladder muscle flaccidity. Later on, it can cause chronic frequent and urgent urination due to bladder muscle spasticity. The pain in the perineum was likely caused by some type of muscle spasm as a result of neuronal damage. The vibration sensation is particularly important though because that day marked the start of that phenomenon, which continues to this day and a similar sensation in my arm muscles.
These observations raise some interesting questions. Did the spinal CCSVI anatomy and reflux develop spontaneously due to a complex interaction between compromised cerebral hemo/hydrodynamics plus congenital problems such as incompetent valves? If this is the case, could the pathological vascular changes seen in MS be part of a slow mechanical process that begin in the head and neck and move southward? Dr. Harshfield seems to think that CSF obstruction and a noncompliant brain ultimately causes the jugular stenoses as a downstream consequence. Could CSF obstruction precipitate the formation of stenoses in the jugulars, which in turn affect the hemodynamics of truncular veins over time, possibly combined with some congenital valvular incompetence that eventually leads to damaging reflux? Azygos anomalies are frequently seen in progressive patients. Dr. Flanagan and others have pointed out the overrepresentation of amytrophic lateral sclersosis among certain occupations where individuals are subjected to demanding pressure changes/valsalva-like maneuvers. ALS has many similarities to MS, especially PPMS where motor neurons are primarily affected.
Another possibility is that the stenoses/reflux was already present when I started working, but when compounded with the normal bodily mechanics of a valsalva maneuver, like constriction of the azygos and functional compression of the superior vena cava, it was superficially exposed? If this is the case, did the spinal CCSVI begin to develop following the head trauma and this just sped things up? If not, then are all of these vascular anomalies congenital and have to be “provoked” to become damaging by acquired or congenital CSF flow problems?
I also think there could be some reflux into the lumbosacral region. Often times I feel worse after eating when there’s some digestive activity down there. I can feel my dysfunctional GI tract trying to work and my lower gut sometimes “pulses”. I also occasionally feel sharp, shooting pains deep in the bladder region and I felt those pains years before onset. In general, my worst periods of progression coincide with horrible gut problems.
I think at a minimum, the fact that the appearance of the cherry angiomas coincided with what must have been lesion formation, during a period where it is known that abdominal and thoracic venous reflux occurs, is indirect evidence for Dr. Schelling’s postulated mechanism of cord flank injury. Indeed, straining today will flare up my symptoms. Recently unclogging the toilet and moving computer equipment around below my desk at work flared up my symptoms and caused overheating.
Regarding my spinal cord on MRI, Dr. Schelling noted “faint indications of a corresponding involvement of the two sides of the spinal cord”.August 2004
During my senior year of high school and while on crutches with an external fixator on my right leg to correct the length discrepancy, I recall a marked increase in the frequency of morning diarrhea. On one occasion while in a bathroom stall at school, I remember saying to myself, honest to goodness, “Let me just remember this (as I took in my circumstances) in case I ever have any health problems down the road”. I don’t really know what made me even think something like but I guess I just had an inkling that something was off. I would think this throughout college as well as the problems persisted. It’s memories like these that I have painstakingly dug up to piece this story together and make sense of all this.August 2005
The frequent and urgent urination symptoms first caught my attention at the start of my first semester of college. The more chronic signs of damage to parts of the cord that innervate the pelvic floor muscles start to appear.Fall 2006
Around this time is when I started to hear crunching noises at the right temporomandibular joint. I remember this because my dad makes a very loud popping noise while he eats for as long as I can remember. I immediately thought of the noise he makes and thought it an odd coincidence. There’s been some recent discussion on these forums about TMJ and MS and the alignment of the atlas. The jaw noise also correlates pretty well with how I’m feeling or going to feel. If I wake up in the morning and open my mouth to a bunch of grinding, then it’s probably going to be a bad day. Eating often provokes it, which often precedes a worsening of symptoms. Spring 2006
Sometime during the spring of 2006, I experienced some more early motor symptoms. A neighbor had asked me to help her move some furniture which amounted to about 20 minute of heavy lifting. While walking back to my house, I recall opening and closing my hands and wondering why they were aching. This is the exact same aching that I experienced now, only that it now takes just a few second of exertion to cause it. It appears that the damage to the motor neurons, in particular the muscles involved with extension of my hands, was already underway, it just remained subclinical under normal conditions.July 2007
My bladder problems worsened this summer to the point where I was urinating as frequently as every 2 hours. I actually visited an urologist for this who told me to stop drinking tea.November 2008
With just a few months left until my “onset”, the signs and symptoms picked up. There was a noticeable increase in frequency of muscle cramping of my left foot after stretching my toes. Classic signs of heat intolerance appeared too. I noticed a loss of sensation in my hands following a hot shower, but because this always resolved after I cooled off, I thought I was just being crazy and maybe it had something to do with my skin wrinkling up. Also during this time, I noticed that my right hand middle and ring fingers would have a tendency to “stick together” occasionally while typing. I would immediately repeat the same key strokes but could not reproduce it. Once again, I wrote it off as being crazy.March – April 2009
I start having ice pick headaches, chronic fatigue, shoulder, and upper back muscle soreness that could not be brushed off. I consider this my disease onset only because it marked a significant downturn in my quality of life.
Stepping back, it looks like my case came in four distinct but interrelated phases.
1. Birth to July 2000 (trauma) - No health problems but likely carrying some congenital risk factors such as vascular anomalies and the design of my skull.
2. July 2000 to June 2004 (Valsalva trigger?) - Slow process of venocongestive brain edema as a result of cervico-occipital trauma. In addition, it’s possible that upper cervical misalignments caused dysautonomia by increasing the volume of CSF in the basal cisterns as explained by Dr. Flanagan. This could explain the bouts of morning diarrhea and general GI issues I was plagued with as well as very brief bursts in my heartbeat that happened pretty infrequently. Two reasons why this might be the culprit are:
a. In the medhelp.org thread, the people there are actually describing two different sounds. The first is more of a fizzing noise and is associated with stomach activity. The other noise is much more mechanical and more zip/zap like. Many of the people state that they hear that sound when they arise from bed in the morning. Others say they hear the noises coinciding with their footsteps, often with only one particular foot. I experienced all of these, but the most consistent one is the stomach fizzing. Interestingly enough, in another thread (http://www.medhelp.org/posts/Neurology/ ... show/12868)with people describing the same sounds, one of the posters (Fannibal) is a 6th year MD, PhD student as well as his wife. She is also hearing it. He takes a guess that this is a subclinical manifestation of what might become normal pressure hydrocephalus. The group-thinkers must not have gotten to him yet.3. June 2004 to March 2009 (onset) – The ever decreasing frequency of dreamful sleep and worsening heat intolerance point to poorer and poorer cerebral blood flow. A truncular venous pathology begins to damage the flanks of the spinal cord which eventually present symptoms.
b. The second reason I believe this might be the cause is that I recently developed a CSF leak following a lumbar puncture for a cisternogram. Within about a minute of waking, I realized that I was starving. My GI tract was functioning perfectly just like prior to the trauma. There is a demonstrable loss in CSF volume in the cranial vault and basal cisterns in these post-LP leaks, which in my case may have actually provided temporary relief.
4. March 2009 to Present – What brought about such a dramatic decline in health so suddenly is beyond me. Some sort of tipping point must have been breached. To be sure, the damage clearly didn’t begin in March 2009 and this disease had a “head start” for at least several years.
Finally, there is a third element to this disease (in addition to the truncular reflux and venocongestive brain edema) that almost certainly has to be true. Dr. Flanagan believes that I may have a functional chiari that occurs when I move my neck and spine into certain positions. I have a military neck which is probably related to the trauma in addition to prolonged computer use over the years. Often times while sitting, especially if I start leaning forward, my head begins to hurt. I have found that lifting my bottom off the seat usually eliminates the pain. Looking slightly down and to the left can also give me problems, one time even producing a “crunching” noise and pain around my left temple. During a visit to the ophthalmologist, I had to place my chin horizontally into a cubby for a field of view test. I had to hunch lower because of my height, which really strained my neck and put it in an awkward position. A few minutes into the test, my left quad starts to spasm like never before and continued to do so until I finished the test. Within 30 seconds of return to normal position, the spasms stopped. The sometimes the zips/zaps I hear coincide with my left footsteps, and sometimes, when I simply turn my head left and right. The sound does not sound like bones grinding.
There are a few other indicators to the mechanical nature of this disease. Repeatedly sitting down and standing up, or standing up abruptly can give me some problems. This is a pretty common problem in Chiari patients. Doing this will sometimes trigger a fluid sensation in my right ear. Tilting my head will cause the fluid to “flow” in the corresponding direction.
I hope my story will generate some discussion. I wonder how many forum members experienced strange signs and symptoms many years before onset? I think many of the puzzle pieces have already been identified and it’s a matter of putting them together and figuring out how to eliminate or disrupt these injurious biomechanical processes. It is nice to see that Dr. Sclafani discovered the genius of Dr. Schelling at ISNVD recently and is absorbing his knowledge. Had doctors listened to Dr. Schelling in the early 1980s, this forum would probably not exist, at least not in its current capacity. That issue actually extends much further back in time and is another topic for another time.