I am late writing and posting this blog entry. Besides hosting my brother, his charming wife and mother in law, subsequently 2 granddaughters, I’ve been pre-occupied with preparing my trip to the USA. Which I canceled, much to my chagrin.
I had purchased the air tickets in March for travel from Paris to Seattle, return a month later San Francisco Paris. My sister, who lives in the forest outside Anchorage, Alaska was hosting a 8 female cousin reunion. Normally I wouldn’t even think of leaving my country home in France during the summer, but I was persuaded to join my sisters and cousins this one time in August.
My planning included visiting my brother in Seattle, then my sister in Alaska, my college roommate friend in Tacoma, another childhood friend on Vashon Island, my mother in Bellingham, a friend in Healdsburg, friends in San Francisco. I still can’t believe I was obliged to cancel, I have disappointed lots of people besides myself, In my head I’m still planning my suitcase to incorporate possibly cold wet weather in Alaska, medium weather in Seattle, hot weather in California. I had traveled alone to the West Coast 3 years previously and everything had gone smoothly like a dream. I assured my concerned husband that I would be accompanied throughout the trip, wheelchair service at the airports and friends and family to pick me up at the airport and drive me about. I would even take the wheelchair with me in case my friends wanted to tour abourt in museums or in town. I can walk with a cane but slowly and inadequately for purposes of tourism.
So what happened ? I read the following articlefrom Truthout on July 8, 2018
A Baby Was Treated With a Nap and a Bottle of Formula. The Bill Was $18,000.
Jenny Gold and Sarah Kliff, Kaiser Health News: How ER Bills Can Cost as Much as $50,000 for "Trauma Response"Published July 8, 2018
American hospital bills are today littered with multiplying fees, many of which don't even exist in other countries. But perhaps the pinnacle is the "trauma fee," in part because it often runs more than $10,000 and in part because it seems to be applied so arbitrarily.
Read the Article
On July 10 I wrote to a friend by e mail :
I was having an anxiety attack for various reasons. For one thing I need to confirm, maybe upgrade my medical insurance. (See article above.) The USA becomes a dangerous place to visit, land in the hospital for a bump on the head and get charged perhaps $50,000 for "trauma".
The same day my friend responded
Message du 10/July/18 16:48
>
Unfortunately true. I had my knee replaced and the hospital bill was $60,000 initially which is what I would have been charged if I had no insurance. Under my insurance contract it was written down to $20,000 which my insurance co paid after I paid a $400 copay. It is very byzantine so you do have to be sure you are covered…
Subsequently I wrote :
> Just an update on my anxiety attack. I was just preparing to cancel the trip when I realized my credit card insurance would pay up to 155,000 euros up to the point of repatriation. That's OK. (The other insurance was 7,600 euros, way too little.) Of course I have no reason to think I'll be in need, but I didn't want to be financially ruined by this trip. Foreigners really need to be careful in traveling to the US
>
So on July 10 it was full steam ahead for my trip.
Then the evening of July 13 I spoke with my San Francisco Naturopath by telephone and in passing described a malaise I had experienced the evening of May 31 when my husband was absent. Suddenly a surge of fluid on the right side of my head so unbalanced me that I was unable to grope my way to a chair. Still standing, I bent over a dresser to « lie » on it, grasping the edges so as not to fall. Fortunately my cell phone was on the dresser, I called my husband who called the neighbor who had the house keys in case of an emergency. He came with his wife. By then my condition had stabilized and they helped me climb the stairs to the bedroom. His wife helped me undress and lie down. Shaky and slightly nauseaous I managed to sleep and by morning felt much better, the crisis had passed. It occurred to me these symptoms resembled a stroke, but I could observe no obvious neurological deficiencies.
About 5 weeks later I was struck by a similar but minor malaise which passed off quickly after I had braced myself against the kitchen sink. It occurred to me that if I had been without something to lean on, in the middle of the street for instance, I would have fallen.
When I described these incidents to my Naturopath, she declared, without hesitation, « with symptoms like that no way should you undertake a trans-Atlantic flight. Cancel the trip. »
Of course she is right. Probably these malaises were at the origin of my anxiety about health insurance. I enjoy medical coverage through my French husband and it is effective not only in France but throughout the European Union. At the moment I’m not going anywhere, but should I venture away from home I’ll stay in Europe. My Naturopath told me that her English mother in law decided, once she felt she couldn’t obtain adequate medical insurance for travel in the USA, she would never travel there again. Was that a suggestion I should do the same ?
Recently I’ve been terribly dizzy which makes me fear a fall. It could be caused partly by the heat. Fluid flow through the CNS acts like refrigeration to keep it cool and if the flow isn’t effective, the brain heats up. Research has revealed that blood flow through MS brains is slower than « normals » which could explain MS sensitivity to heat. If I venture out in 80° heat I literally melt, have trouble walking. An ice pack on the neck helps, a cooling jacket might work better. A plunge into the pool best of all.
Corollary to this blood flow issue, I have to be very careful about bending down to pick something up, since upon rising it takes time for the blood to resume flow through the head. I’m very very dizzy. One MSer reports the need to wait 20 seconds before resuming activity. This may account for the crisis which has caused me to cancel my trip and not a question of possible stroke. However, the phenomena is much worse now than it was before the fall on my buttocks late January which is why I think the ensueing back trauma has restricted CSF flow. Even sitting at the computer restricts CNS fluid flow as my back is blocked and the shoulders hunched up in tension. (My Naturopath recently suggested that the January fall had caused a hairline fracture in my back. Could well explain the terrible pain.)
If I can swim, my head clears up, I feel better. But the relief doesn’t last long if I undertake my daily walk. This is new since the fall on my buttocks late January, which is why I think the back injury has obstructed free circulation of the CSF. Obstructed CSF flow may be at the origin of my dizzyness and also the « stroke » like event which caused me to cancel my trip.
What if the smooth muscles of the brain’s veins were clenched tight only to open abruptly to send a rush of blood on one side of my head, unbalancing it. That’s what it felt like. Maybe that wasn’t a stroke so much as the sudden release of a vascular smooth muscle spasm as understood by Dr Owiesy. There were no evident neurological deficits consistent with a stroke. However, even if it wasn’t a stroke, I would have fallen which at my age -70- isn’t such a great idea. Better not risk it one way or another.
France is currently gripped in a heat wave and I’ve been miserably dizzy. When I described my symptoms, my physical therapist gave me 2 sachets of POLASE PLUS, an Italian powder consisting of « potassium gluconato e Magnesio citrate ». He said it helps him during a heat wave because he has low blood pressure. I have VERY low blood pressure (90 over 60). When I asked how he knew about it, he said that during a heat wave in Italy he had been admitted to Hospital Emergency with an accelerated heart beat and was examined for a potential heart attack. His heart was fine. The Doctor sent him away recommending the over the counter P0LASE grains which cleared up his symptoms at once. Since then he always takes it during a heat wave.
Well, it helped me as well.. The product doesn’t exist in France but I have since ordered over the internet a tablet of Magnesium 150mg/Potassium 300 mg which I’ll take twice a day during the heat wave. I read with interest that the potassium acts on « electrolites » which are flushed from the body during a heat wave which may be a factor in my dizzyness. My Naturopath recommended I take 2 tabs a day during the heat wave, drink fluids, fruit juice, add sugar, more salt, iodine, green magma. It amazes me that after feeling SO miserable, imagining I had a brain tumour, there existed so simple a solution. Luck was with me that my Congolese - born physical therapist had the answer at his fingertips. (He worked many years in Milan, Italy. His presence here in the French countryside is a godsend for the locals given the wholesale desertion of the French medical corps. I hope he stays.)
When I get up in the morning my « nerve » symptoms are minimal. My lower back hurts. Just sitting at the computer stiffens my back and triggers muscle wrap symptoms around both feet, lower legs which I hate. Even sitting at a table stiffens my back enough to trigger « nerve » symptoms. This implies that my body structure is impeding free flow of the CSF and perhaps blood.
My Generalist has ordered an MRI of the head and cervicals. I need to have the prescription changed to include the entire spine from the tailbone right up to the Atlas Cervicals (and the head if she wishes). What I’m looking for are signs of fluid obstruction. Hopefully once the problem is determined, a good chiropractor and or osteopath can release obstruction and fluid flows. In 1980 the renowned Neurologist Dr Christopher Pallis determined that my spine was damaged in my first major attack. My spine was never examined by an MRI so it will interest me to see if the damage is located at the Azygos vein level which would be consistent with the CCSVI theory. I believe I halted the attack with a Shiatsu massage which would explain why the spine was only partially damaged. An interesting exploration.
An excellent illustration of how back injuries « cause » MS in some individuals can be found on the ThisisMS websight (www.thisisms.com/)under the CCSVI & CCVBP thread. Dr Michael Flanagan, Chiropractor,emphasized the role of body structure in neurological disorders as he engaged in lively, informative exchanges with MSers under the pseudonym uprightdoc. In 1987 he published The Downside of Upright Posture - The Anatomical Causes of Alzheimer's, Parkinson's and Multiple Sclerosis which,unfortunately, is now out of print. (Current Amazon price $600 !)
On Sept 10 2013 he wrote
Hello Robni,
I can see the discs form C2 through T3 on the sagittal (lateral) cervical view and T9 through L5 on the sagittal lumbar view. The only discs missing are T4-T8. The top and bottom of the square body portion of the vertebral segments are called the end plates. The end plates. The end plates are supported by a meshwork of columns and beams called trabecula. All of your cervical endplates show compression deformation. You have significant disc degeneration (spondylosis) causing stenosis of the spinal canal at C5/6 and C6/7. The spondylosis is close to, but not quite contacting the cord. Technically it is not considered to be stenosis or myelopathy unless it compresses the cord. Nonetheless, the stenosis of the canal caused by the spondylosis is compressing the epidural space. The epidural space contains the vertebral venous plexus (VVP). The VVP is the drainage system of the spinal cord. It also drains the brain during upright posture. Increased pressure in the epidural space on the VVP decrease the pressure gradient for blood flow to the cord. Decreased blood flow to the cord can cause chronic ischemia and degeneration. In my opinion, spondylosis can also affect CSF flow between the cranial vault and spinal canal. The endplates of all your lumbar vertebra show similar signs of compression deformation but there is no stenosis due to spondylosis. Your signs and symptoms are due to the spondylosis causing and stenosis of the spinal canal in the cervical spine and increased pressure on the spinal cord similar to
but not quite a myelopathy. I have consulted and treated many cases similar to yours. Blossom is a good example. As I recall, you said you played soccer. Heading the ball and hard falls on the buttocks would explain the deformation of the endplates in the cervical and lumbar vertebra.
MARCH 9 2016
Robnl wrote:
... Want I wanted to ask; legs are very weak, little movement....but if a fly walks over legs or toe I can feel it. How about damaged nerves?
You have significant atrophy of the cord. There is a good chance you have nerve damage. Atrophy of the cord can occur due to a die forward or die back process. Two major causes of nerve damage, die forward and die back processes are ischemia and compression. You showed no signs of compression of the cord or arteries on your upright MRI that could potentially cause atrophy. You do have hyperintensity signals in the brain that can be signs of chronic inflammation, ischemia, edema and nerve damage. Nerve damage in the motor cortex of the brain can initiate die forward processes in nerves. More importantly, you have stenosis of the lower spinal canal that is compressing the epidural space and veins, as well as the cord. Stenosis of the canal can cause chronic inflammation, ischemia and edema in the canal and cord that can initiate neurodegenerative processes that could result in die forward and die back processes. Surgeons have had some good results revascularizing the cord in cases of ischemia. They have also has good results in surgical decompression of the cord due to stenosis. The problem is trying to determine which patients will benefit and which one have permanent deficits. It is the same problem in patients with normal pressure hydrocephalus. The challenge is determining which patients will benefit.
Dr. Flanagan recommended that skeptical neurologists read the following.
Magn Reson Imaging Clin N Am. 1999 Aug;7(3):573-87.
MR imaging of cerebrospinal fluid flow and spinal cord motion in neurologic disorders of the spine.
Levy LM1.
Author information
Abstract
In summary, MR imaging of CSF and cord motion helps to evaluate diseases affecting cord and CSF motion and to identify the specific pathophysiology involved. A number of significant points have been made. First, MR imaging flow studies can be useful in evaluating CSF spaces and cystic diseases. Second, longitudinal and transverse motions occur in the spinal cord and CSF. Traveling wave motion occurs along the length of the spinal cord. Third, spinal cord tethering is associated with decreased cord velocity and loss of cord displacement at tethering site. Decreased transverse velocities occur with lateral cord tethering to the spinal canal. Fourth, in spinal dysraphism, longitudinal cord velocity is decreased by tethering, and is normal in asymptomatic patients with low conus. Normal cord motion helps to rule out possible tethering in symptomatic dysraphism with hydromyelia. Fifth, in acquired and nonmyelodysplastic symptomatic tethering, spinal cord motion is decreased. Sixth, in symptomatic cord compression, CSF flow and cord motion decrease, but recover after surgical decompression and after compensatory atrophy. Seventh, in asymptomatic spinal stenosis, cord motion is normal or increased. Diffuse spinal stenosis with cord atrophy leads to diffuse cord acceleration and prolonged cord caudal velocity, possibly related to the loss of the transverse mobility of the cord. Finally, focal spinal stenosis leads to focal dynamic cord deformation and can be associated with prominent intramedullary deformations. When compression is severe or symptomatic, cord motion is significantly decreased. Postoperative cases demonstrate good recovery of cord and CSF motion, unless compression or obstruction is still present.
PMID:
BACK TO ME.
The Ideal MRI to see the condition of the spine and cerebral spinal fluid flow is the FONAR cinematic upright MRI according to Dr Flanagan and the inventor Raymond Damadian.
See The Cranio-cervical Syndrome and MRI,
Editor(s): Smith, F.W. (London)
Dworkin, J.S. (Melville, NY)
Published 2015
Referring to the above book, the following is quoted from FONAR corporation website.
« This publication is valuable reading for practioners in the fields of radiology, neurosurgery, neurology, pain management, orthopaedic surgery as well as for chiropractors and osteopaths.
Raymond Damadian, MD and David Chu, PhD of FONAR Corporation contributed a chapter entitled "The Possible Role of Craniocervical Trauma and Abnormal Cerebrospinal Fluid Hydrodynamics in the Genesis of Multiple Sclerosis and the Craniocervical Syndrome.” Their published abstract reveals: "The importance of visualizing and measuring cerebrospinal fluid (CSF) flow dynamics of patients in the upright position is described. Recent observations from the FONAR Upright® Weight-Bearing Multi-PositionTM MRI likely to provide a new understanding of the origin of neurodegenerative diseases, such as multiple sclerosis, are discussed. The vulnerability of the human neck and its impact on CSF flow throughout the brain and spine is also linked to properly identifying the craniocervical syndrome given its plethora of symptoms.”
Order online at: www.karger.com/neurosurgery »
Stephanie Johnston directed me to the FONAR Corporation in New York for information – at 631-694-2929. « Ellen » informed me that there are now about 150 FONAR MRI s in the United States and that by calling her she can direct one to the nearest site. Unfortunately I must find a center in Europe. There are sites in the following German cities – Munich, Hamburg, Hanover, Cologne, and Frankfort. There is one in Zurich, Switzerland. England features sites in London and Manchester. For more information one can consult www.medserena.com.
There are no sites in France. Why not? In my opinion it’s because Neurologists monopolize Neurological diagnois and treatment in France. They enjoy a very dominant position in the medical hierarchy and have established a protocol centered on MRI analysis of plaques/inflammation and DMD’s designed to suppress immune system activity. Dr Flanagan’s theory that 25% of MS cases are in fact caused by body structure impediments of free CNS fluid flow has no place in their world view. Also, the best therapists for obstructed CSF flow are probably Chiropractors and Osteopaths who manipulate the body structure. These are not high status professions. We are talking status here, not science.
A Neurologist might be persuaded to consider the hydrocephalus issue. (Should I discuss the issue with a Neurologist, I’ll slip in the possibility that one should try therapy by a good body worker before considering other options.)
https://www.verywellhealth.com/normal-pressure-hydrocephalus-nph-98740
Treatment usually consists of inserting a shunt into the brain ventricle to drain extra fluid through a small catheter. A shunt is a surgical drain. There are two types:
BACK TO ME AGAIN. So now I am going to ask for an MRI of the entire spine/head at the hospital at Tours. Usually in France the patient receives the photos. I will compare them to the photos taken when I broke my sacrum Nov 2008 to see if the damage is worse.
Meeting the Neurologist will be a challenge. I will explain that I want to see if there are any obstructions to CNS fluid flows that he/she can see. I know we will be at crosspurposes. I have one advantage. I consulted with a renowned Professor at Charcot’s world famous hospital in Paris, La Pitié-Salpetrière during the summer of 1993 to ask if I should consider taking the new beta-interferon drugs. He said my individual treatment (diet, supplements, body work) appeared to be working and that my case was minor. He recommended against the drugs.
(This was before I fell apart, largely owing to stress. Even the accidents originated in stress.)
The advantage this gives me is that the Professor enjoys very high status in France. It’s as though I had spoken with God, which will act as a shield. Also, other than the MRI, I don’t want anything from the Doctors, I’m not needy. Being needy brings out a sadistic streak in some people, having neurological deficits even more so. Neurologists are no different. Often they are overwhelmed by this neediness which they hope to send away with a drug prescription. In any case, they are hampered by their training and social constraints.
The knowledge that Dr Zamboni, Dr Owiesy and Dr Flanagan imparted has freed me from being tyrannized by Neurologists.
Of course, I have to be tactful, say nothing of the kind. If really the static MRI is insufficient, I can go to Germany or England, or Switzerland. I am not interested in satisfying anyone’s curiosity. No spinal tap. The evoked potential will do no harm.
It really irritates Doctors to be « educated » by their patient. Also, egos are at work. Women in particular may have to deal with an easily enraged male ego which won’t tolerate contradiction.
I truly believe that if I had known about the blood /CSF fluid circulation factor in MS I wouldn’t be handicapped today. I could have halted the damage at the RRMS stage and avoided Progression. I’m now 70 years old and look good and until recently, felt good. I am handicapped. It’s too late for me to avoid the handicap, but people can avoid my errors and help themselves using this knowledge. Which is why I persist in writing this blog.
FRODO of ThisisMS.com regularly posts ongoing MS research. He recently posted the following in which a well respected MS researcher has stopped referring to MS as an « auto-immune » disease while suggesting that unknown soluble factors induce neurodegeneration.
« Hans Lassman is one of the leaders in MS research. He does not say the word "autoimmune" anymore, nor speaks too much about myelin.
Multiple Sclerosis Pathology.
https://www.ncbi.nlm.nih.gov/pubmed/29358320
Abstract
Multiple sclerosis (MS) is a chronic inflammatory demyelinating disease of the central nervous system (CNS), which gives rise to focal lesions in the gray and white matter and to diffuse neurodegeneration in the entire brain. In this review, the spectrum of MS lesions and their relation to the inflammatory process is described.
Pathology suggests that inflammation drives tissue injury at all stages of the disease. Focal inflammatory infiltrates in the meninges and the perivascular spaces appear to produce soluble factors, which induce demyelination or neurodegeneration either directly or indirectly through microglia activation. The nature of these soluble factors, which are responsible for demyelinating activity in sera and cerebrospinal fluid of the patients, is currently undefined. Demyelination and neurodegeneration is finally accomplished by oxidative injury and mitochondrial damage leading to a state of "virtual hypoxia."
TAGS : FONAR cinematic upright MRI, Dr. Raymond Damadian, Dr. Paolo Zamboni, Dr. Michael Flanagan, Dr. Owiesy, Multiple Sclerosis, Hans Lassman, Hydrocephalus, Potassium/Magnesium
I had purchased the air tickets in March for travel from Paris to Seattle, return a month later San Francisco Paris. My sister, who lives in the forest outside Anchorage, Alaska was hosting a 8 female cousin reunion. Normally I wouldn’t even think of leaving my country home in France during the summer, but I was persuaded to join my sisters and cousins this one time in August.
My planning included visiting my brother in Seattle, then my sister in Alaska, my college roommate friend in Tacoma, another childhood friend on Vashon Island, my mother in Bellingham, a friend in Healdsburg, friends in San Francisco. I still can’t believe I was obliged to cancel, I have disappointed lots of people besides myself, In my head I’m still planning my suitcase to incorporate possibly cold wet weather in Alaska, medium weather in Seattle, hot weather in California. I had traveled alone to the West Coast 3 years previously and everything had gone smoothly like a dream. I assured my concerned husband that I would be accompanied throughout the trip, wheelchair service at the airports and friends and family to pick me up at the airport and drive me about. I would even take the wheelchair with me in case my friends wanted to tour abourt in museums or in town. I can walk with a cane but slowly and inadequately for purposes of tourism.
So what happened ? I read the following articlefrom Truthout on July 8, 2018
A Baby Was Treated With a Nap and a Bottle of Formula. The Bill Was $18,000.
Jenny Gold and Sarah Kliff, Kaiser Health News: How ER Bills Can Cost as Much as $50,000 for "Trauma Response"Published July 8, 2018
American hospital bills are today littered with multiplying fees, many of which don't even exist in other countries. But perhaps the pinnacle is the "trauma fee," in part because it often runs more than $10,000 and in part because it seems to be applied so arbitrarily.
Read the Article
On July 10 I wrote to a friend by e mail :
I was having an anxiety attack for various reasons. For one thing I need to confirm, maybe upgrade my medical insurance. (See article above.) The USA becomes a dangerous place to visit, land in the hospital for a bump on the head and get charged perhaps $50,000 for "trauma".
The same day my friend responded
Message du 10/July/18 16:48
>
Unfortunately true. I had my knee replaced and the hospital bill was $60,000 initially which is what I would have been charged if I had no insurance. Under my insurance contract it was written down to $20,000 which my insurance co paid after I paid a $400 copay. It is very byzantine so you do have to be sure you are covered…
Subsequently I wrote :
> Just an update on my anxiety attack. I was just preparing to cancel the trip when I realized my credit card insurance would pay up to 155,000 euros up to the point of repatriation. That's OK. (The other insurance was 7,600 euros, way too little.) Of course I have no reason to think I'll be in need, but I didn't want to be financially ruined by this trip. Foreigners really need to be careful in traveling to the US
>
So on July 10 it was full steam ahead for my trip.
Then the evening of July 13 I spoke with my San Francisco Naturopath by telephone and in passing described a malaise I had experienced the evening of May 31 when my husband was absent. Suddenly a surge of fluid on the right side of my head so unbalanced me that I was unable to grope my way to a chair. Still standing, I bent over a dresser to « lie » on it, grasping the edges so as not to fall. Fortunately my cell phone was on the dresser, I called my husband who called the neighbor who had the house keys in case of an emergency. He came with his wife. By then my condition had stabilized and they helped me climb the stairs to the bedroom. His wife helped me undress and lie down. Shaky and slightly nauseaous I managed to sleep and by morning felt much better, the crisis had passed. It occurred to me these symptoms resembled a stroke, but I could observe no obvious neurological deficiencies.
About 5 weeks later I was struck by a similar but minor malaise which passed off quickly after I had braced myself against the kitchen sink. It occurred to me that if I had been without something to lean on, in the middle of the street for instance, I would have fallen.
When I described these incidents to my Naturopath, she declared, without hesitation, « with symptoms like that no way should you undertake a trans-Atlantic flight. Cancel the trip. »
Of course she is right. Probably these malaises were at the origin of my anxiety about health insurance. I enjoy medical coverage through my French husband and it is effective not only in France but throughout the European Union. At the moment I’m not going anywhere, but should I venture away from home I’ll stay in Europe. My Naturopath told me that her English mother in law decided, once she felt she couldn’t obtain adequate medical insurance for travel in the USA, she would never travel there again. Was that a suggestion I should do the same ?
Recently I’ve been terribly dizzy which makes me fear a fall. It could be caused partly by the heat. Fluid flow through the CNS acts like refrigeration to keep it cool and if the flow isn’t effective, the brain heats up. Research has revealed that blood flow through MS brains is slower than « normals » which could explain MS sensitivity to heat. If I venture out in 80° heat I literally melt, have trouble walking. An ice pack on the neck helps, a cooling jacket might work better. A plunge into the pool best of all.
Corollary to this blood flow issue, I have to be very careful about bending down to pick something up, since upon rising it takes time for the blood to resume flow through the head. I’m very very dizzy. One MSer reports the need to wait 20 seconds before resuming activity. This may account for the crisis which has caused me to cancel my trip and not a question of possible stroke. However, the phenomena is much worse now than it was before the fall on my buttocks late January which is why I think the ensueing back trauma has restricted CSF flow. Even sitting at the computer restricts CNS fluid flow as my back is blocked and the shoulders hunched up in tension. (My Naturopath recently suggested that the January fall had caused a hairline fracture in my back. Could well explain the terrible pain.)
If I can swim, my head clears up, I feel better. But the relief doesn’t last long if I undertake my daily walk. This is new since the fall on my buttocks late January, which is why I think the back injury has obstructed free circulation of the CSF. Obstructed CSF flow may be at the origin of my dizzyness and also the « stroke » like event which caused me to cancel my trip.
What if the smooth muscles of the brain’s veins were clenched tight only to open abruptly to send a rush of blood on one side of my head, unbalancing it. That’s what it felt like. Maybe that wasn’t a stroke so much as the sudden release of a vascular smooth muscle spasm as understood by Dr Owiesy. There were no evident neurological deficits consistent with a stroke. However, even if it wasn’t a stroke, I would have fallen which at my age -70- isn’t such a great idea. Better not risk it one way or another.
France is currently gripped in a heat wave and I’ve been miserably dizzy. When I described my symptoms, my physical therapist gave me 2 sachets of POLASE PLUS, an Italian powder consisting of « potassium gluconato e Magnesio citrate ». He said it helps him during a heat wave because he has low blood pressure. I have VERY low blood pressure (90 over 60). When I asked how he knew about it, he said that during a heat wave in Italy he had been admitted to Hospital Emergency with an accelerated heart beat and was examined for a potential heart attack. His heart was fine. The Doctor sent him away recommending the over the counter P0LASE grains which cleared up his symptoms at once. Since then he always takes it during a heat wave.
Well, it helped me as well.. The product doesn’t exist in France but I have since ordered over the internet a tablet of Magnesium 150mg/Potassium 300 mg which I’ll take twice a day during the heat wave. I read with interest that the potassium acts on « electrolites » which are flushed from the body during a heat wave which may be a factor in my dizzyness. My Naturopath recommended I take 2 tabs a day during the heat wave, drink fluids, fruit juice, add sugar, more salt, iodine, green magma. It amazes me that after feeling SO miserable, imagining I had a brain tumour, there existed so simple a solution. Luck was with me that my Congolese - born physical therapist had the answer at his fingertips. (He worked many years in Milan, Italy. His presence here in the French countryside is a godsend for the locals given the wholesale desertion of the French medical corps. I hope he stays.)
When I get up in the morning my « nerve » symptoms are minimal. My lower back hurts. Just sitting at the computer stiffens my back and triggers muscle wrap symptoms around both feet, lower legs which I hate. Even sitting at a table stiffens my back enough to trigger « nerve » symptoms. This implies that my body structure is impeding free flow of the CSF and perhaps blood.
My Generalist has ordered an MRI of the head and cervicals. I need to have the prescription changed to include the entire spine from the tailbone right up to the Atlas Cervicals (and the head if she wishes). What I’m looking for are signs of fluid obstruction. Hopefully once the problem is determined, a good chiropractor and or osteopath can release obstruction and fluid flows. In 1980 the renowned Neurologist Dr Christopher Pallis determined that my spine was damaged in my first major attack. My spine was never examined by an MRI so it will interest me to see if the damage is located at the Azygos vein level which would be consistent with the CCSVI theory. I believe I halted the attack with a Shiatsu massage which would explain why the spine was only partially damaged. An interesting exploration.
An excellent illustration of how back injuries « cause » MS in some individuals can be found on the ThisisMS websight (www.thisisms.com/)under the CCSVI & CCVBP thread. Dr Michael Flanagan, Chiropractor,emphasized the role of body structure in neurological disorders as he engaged in lively, informative exchanges with MSers under the pseudonym uprightdoc. In 1987 he published The Downside of Upright Posture - The Anatomical Causes of Alzheimer's, Parkinson's and Multiple Sclerosis which,unfortunately, is now out of print. (Current Amazon price $600 !)
On Sept 10 2013 he wrote
Hello Robni,
I can see the discs form C2 through T3 on the sagittal (lateral) cervical view and T9 through L5 on the sagittal lumbar view. The only discs missing are T4-T8. The top and bottom of the square body portion of the vertebral segments are called the end plates. The end plates. The end plates are supported by a meshwork of columns and beams called trabecula. All of your cervical endplates show compression deformation. You have significant disc degeneration (spondylosis) causing stenosis of the spinal canal at C5/6 and C6/7. The spondylosis is close to, but not quite contacting the cord. Technically it is not considered to be stenosis or myelopathy unless it compresses the cord. Nonetheless, the stenosis of the canal caused by the spondylosis is compressing the epidural space. The epidural space contains the vertebral venous plexus (VVP). The VVP is the drainage system of the spinal cord. It also drains the brain during upright posture. Increased pressure in the epidural space on the VVP decrease the pressure gradient for blood flow to the cord. Decreased blood flow to the cord can cause chronic ischemia and degeneration. In my opinion, spondylosis can also affect CSF flow between the cranial vault and spinal canal. The endplates of all your lumbar vertebra show similar signs of compression deformation but there is no stenosis due to spondylosis. Your signs and symptoms are due to the spondylosis causing and stenosis of the spinal canal in the cervical spine and increased pressure on the spinal cord similar to
but not quite a myelopathy. I have consulted and treated many cases similar to yours. Blossom is a good example. As I recall, you said you played soccer. Heading the ball and hard falls on the buttocks would explain the deformation of the endplates in the cervical and lumbar vertebra.
MARCH 9 2016
Robnl wrote:
... Want I wanted to ask; legs are very weak, little movement....but if a fly walks over legs or toe I can feel it. How about damaged nerves?
You have significant atrophy of the cord. There is a good chance you have nerve damage. Atrophy of the cord can occur due to a die forward or die back process. Two major causes of nerve damage, die forward and die back processes are ischemia and compression. You showed no signs of compression of the cord or arteries on your upright MRI that could potentially cause atrophy. You do have hyperintensity signals in the brain that can be signs of chronic inflammation, ischemia, edema and nerve damage. Nerve damage in the motor cortex of the brain can initiate die forward processes in nerves. More importantly, you have stenosis of the lower spinal canal that is compressing the epidural space and veins, as well as the cord. Stenosis of the canal can cause chronic inflammation, ischemia and edema in the canal and cord that can initiate neurodegenerative processes that could result in die forward and die back processes. Surgeons have had some good results revascularizing the cord in cases of ischemia. They have also has good results in surgical decompression of the cord due to stenosis. The problem is trying to determine which patients will benefit and which one have permanent deficits. It is the same problem in patients with normal pressure hydrocephalus. The challenge is determining which patients will benefit.
Dr. Flanagan recommended that skeptical neurologists read the following.
Magn Reson Imaging Clin N Am. 1999 Aug;7(3):573-87.
MR imaging of cerebrospinal fluid flow and spinal cord motion in neurologic disorders of the spine.
Levy LM1.
Author information
Abstract
In summary, MR imaging of CSF and cord motion helps to evaluate diseases affecting cord and CSF motion and to identify the specific pathophysiology involved. A number of significant points have been made. First, MR imaging flow studies can be useful in evaluating CSF spaces and cystic diseases. Second, longitudinal and transverse motions occur in the spinal cord and CSF. Traveling wave motion occurs along the length of the spinal cord. Third, spinal cord tethering is associated with decreased cord velocity and loss of cord displacement at tethering site. Decreased transverse velocities occur with lateral cord tethering to the spinal canal. Fourth, in spinal dysraphism, longitudinal cord velocity is decreased by tethering, and is normal in asymptomatic patients with low conus. Normal cord motion helps to rule out possible tethering in symptomatic dysraphism with hydromyelia. Fifth, in acquired and nonmyelodysplastic symptomatic tethering, spinal cord motion is decreased. Sixth, in symptomatic cord compression, CSF flow and cord motion decrease, but recover after surgical decompression and after compensatory atrophy. Seventh, in asymptomatic spinal stenosis, cord motion is normal or increased. Diffuse spinal stenosis with cord atrophy leads to diffuse cord acceleration and prolonged cord caudal velocity, possibly related to the loss of the transverse mobility of the cord. Finally, focal spinal stenosis leads to focal dynamic cord deformation and can be associated with prominent intramedullary deformations. When compression is severe or symptomatic, cord motion is significantly decreased. Postoperative cases demonstrate good recovery of cord and CSF motion, unless compression or obstruction is still present.
PMID:
BACK TO ME.
The Ideal MRI to see the condition of the spine and cerebral spinal fluid flow is the FONAR cinematic upright MRI according to Dr Flanagan and the inventor Raymond Damadian.
See The Cranio-cervical Syndrome and MRI,
Editor(s): Smith, F.W. (London)
Dworkin, J.S. (Melville, NY)
Published 2015
Referring to the above book, the following is quoted from FONAR corporation website.
« This publication is valuable reading for practioners in the fields of radiology, neurosurgery, neurology, pain management, orthopaedic surgery as well as for chiropractors and osteopaths.
Raymond Damadian, MD and David Chu, PhD of FONAR Corporation contributed a chapter entitled "The Possible Role of Craniocervical Trauma and Abnormal Cerebrospinal Fluid Hydrodynamics in the Genesis of Multiple Sclerosis and the Craniocervical Syndrome.” Their published abstract reveals: "The importance of visualizing and measuring cerebrospinal fluid (CSF) flow dynamics of patients in the upright position is described. Recent observations from the FONAR Upright® Weight-Bearing Multi-PositionTM MRI likely to provide a new understanding of the origin of neurodegenerative diseases, such as multiple sclerosis, are discussed. The vulnerability of the human neck and its impact on CSF flow throughout the brain and spine is also linked to properly identifying the craniocervical syndrome given its plethora of symptoms.”
Order online at: www.karger.com/neurosurgery »
Stephanie Johnston directed me to the FONAR Corporation in New York for information – at 631-694-2929. « Ellen » informed me that there are now about 150 FONAR MRI s in the United States and that by calling her she can direct one to the nearest site. Unfortunately I must find a center in Europe. There are sites in the following German cities – Munich, Hamburg, Hanover, Cologne, and Frankfort. There is one in Zurich, Switzerland. England features sites in London and Manchester. For more information one can consult www.medserena.com.
There are no sites in France. Why not? In my opinion it’s because Neurologists monopolize Neurological diagnois and treatment in France. They enjoy a very dominant position in the medical hierarchy and have established a protocol centered on MRI analysis of plaques/inflammation and DMD’s designed to suppress immune system activity. Dr Flanagan’s theory that 25% of MS cases are in fact caused by body structure impediments of free CNS fluid flow has no place in their world view. Also, the best therapists for obstructed CSF flow are probably Chiropractors and Osteopaths who manipulate the body structure. These are not high status professions. We are talking status here, not science.
A Neurologist might be persuaded to consider the hydrocephalus issue. (Should I discuss the issue with a Neurologist, I’ll slip in the possibility that one should try therapy by a good body worker before considering other options.)
https://www.verywellhealth.com/normal-pressure-hydrocephalus-nph-98740
Treatment usually consists of inserting a shunt into the brain ventricle to drain extra fluid through a small catheter. A shunt is a surgical drain. There are two types:
- Ventricoperitoneal shunt: This shunt is placed in the brain's ventricle and has a small catheter, or tube, that leads to the abdomen, where the extra fluid can be released and reabsorbed.
- Ventriculoatrial shunt: This shunt’s catheter is inserted into the ventricle and drains into the jugular vein, located just above the atrium of the heart.
BACK TO ME AGAIN. So now I am going to ask for an MRI of the entire spine/head at the hospital at Tours. Usually in France the patient receives the photos. I will compare them to the photos taken when I broke my sacrum Nov 2008 to see if the damage is worse.
Meeting the Neurologist will be a challenge. I will explain that I want to see if there are any obstructions to CNS fluid flows that he/she can see. I know we will be at crosspurposes. I have one advantage. I consulted with a renowned Professor at Charcot’s world famous hospital in Paris, La Pitié-Salpetrière during the summer of 1993 to ask if I should consider taking the new beta-interferon drugs. He said my individual treatment (diet, supplements, body work) appeared to be working and that my case was minor. He recommended against the drugs.
(This was before I fell apart, largely owing to stress. Even the accidents originated in stress.)
The advantage this gives me is that the Professor enjoys very high status in France. It’s as though I had spoken with God, which will act as a shield. Also, other than the MRI, I don’t want anything from the Doctors, I’m not needy. Being needy brings out a sadistic streak in some people, having neurological deficits even more so. Neurologists are no different. Often they are overwhelmed by this neediness which they hope to send away with a drug prescription. In any case, they are hampered by their training and social constraints.
The knowledge that Dr Zamboni, Dr Owiesy and Dr Flanagan imparted has freed me from being tyrannized by Neurologists.
Of course, I have to be tactful, say nothing of the kind. If really the static MRI is insufficient, I can go to Germany or England, or Switzerland. I am not interested in satisfying anyone’s curiosity. No spinal tap. The evoked potential will do no harm.
It really irritates Doctors to be « educated » by their patient. Also, egos are at work. Women in particular may have to deal with an easily enraged male ego which won’t tolerate contradiction.
I truly believe that if I had known about the blood /CSF fluid circulation factor in MS I wouldn’t be handicapped today. I could have halted the damage at the RRMS stage and avoided Progression. I’m now 70 years old and look good and until recently, felt good. I am handicapped. It’s too late for me to avoid the handicap, but people can avoid my errors and help themselves using this knowledge. Which is why I persist in writing this blog.
FRODO of ThisisMS.com regularly posts ongoing MS research. He recently posted the following in which a well respected MS researcher has stopped referring to MS as an « auto-immune » disease while suggesting that unknown soluble factors induce neurodegeneration.
« Hans Lassman is one of the leaders in MS research. He does not say the word "autoimmune" anymore, nor speaks too much about myelin.
Multiple Sclerosis Pathology.
https://www.ncbi.nlm.nih.gov/pubmed/29358320
Abstract
Multiple sclerosis (MS) is a chronic inflammatory demyelinating disease of the central nervous system (CNS), which gives rise to focal lesions in the gray and white matter and to diffuse neurodegeneration in the entire brain. In this review, the spectrum of MS lesions and their relation to the inflammatory process is described.
Pathology suggests that inflammation drives tissue injury at all stages of the disease. Focal inflammatory infiltrates in the meninges and the perivascular spaces appear to produce soluble factors, which induce demyelination or neurodegeneration either directly or indirectly through microglia activation. The nature of these soluble factors, which are responsible for demyelinating activity in sera and cerebrospinal fluid of the patients, is currently undefined. Demyelination and neurodegeneration is finally accomplished by oxidative injury and mitochondrial damage leading to a state of "virtual hypoxia."
TAGS : FONAR cinematic upright MRI, Dr. Raymond Damadian, Dr. Paolo Zamboni, Dr. Michael Flanagan, Dr. Owiesy, Multiple Sclerosis, Hans Lassman, Hydrocephalus, Potassium/Magnesium
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