“Choices leaflet: Primary progressive multiple sclerosis
What is primary progressive MS?
Approximately 10% of people with MS worldwide are told they have primary progressive MS – a form of MS where from the very first symptoms, the progression of the disease is continuous from the outset. Symptoms get continually worse over time rather than having relapses and remissions.
Primary progressive MS is usually diagnosed in people in their 40s and 50s (older than the average age for diagnosis of relapsing remitting MS) although in some cases it can be diagnosed in those younger or older than this.
How does primary progressive MS differ from relapsing remitting MS?
The most obvious difference between primary progressive MS (PPMS) and the more common relapsing remitting MS (RRMS) is the absence of relapses.
RRMS is caused by inflammatory attacks on the myelin – a protective layer which covers the cells of the central nervous system. With PPMS there is much less of this inflammation and people with PPMS tend to have fewer brain lesions than those with RRMS. Any lesions they do have tend to have fewer inflammatory cells. PPMS does however tend to cause more axonal damage.
Generally, those with PPMS tend to have more lesions on the spinal cord than in the brain.
Just as many men as women have primary progressive MS whereas there are approximately three times as many women with relapsing remitting MS as men…
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(One comment on that last sentence. Sixty years ago there was no gender difference in RRMS incidence either. Why has the incidence in RRMS for women exploded since then? Since I believe that RRMS is caused by vascular deformities leading to blood circulation problems, I would look at what has changed in sixty years to cause this problem for women? My answer, birth control pills and hormonal therapies which are known to impact the vascular system negatively - e.g. increased risk of stroke.)
So what does this suggest to me? I believe MRI observed lesions represent inflammation caused by the blood reflux which are at the origin of the relapses. No relapses, no lesions. PPMS lesions tend to be on the spinal cord, not the brain. In consequence “because those with primary progressive MS tend to have more lesions on the spinal cord, problems with walking are very common. In a recent survey we conducted, 90% of people with PPMS said they had some form of mobility problem.”
PPMS strikes generally people in their 40’s or 50’s (later than RRMS). While there is little inflammation, there is more axonal damage.
Because the DMD’s (disease modifying drugs) are used to treat inflammation, they are not considered of use to PPMS patients, only RRMS. Doubtless because of the paucity of available medical treatments, MS-UK has provided an excellent review of alternative therapies (updated August 2014.) for these patients. However, I consider this an excellent resource for ALL Multiple Sclerosis patients.
Back to my thinking on the brain fluid circulation issue. I believe these patients do NOT suffer so much from a blood reflux as defined by Professor Zamboni as they do skeletal obstructions which hinder the free flow of blood and cerebrospinal fluid. In consequence, Venoplasty would be inappropriate, even harmful for them. They need specialists to free the obstructions. Chiropractic manipulation? Surgery? (my last choice).
The Chiropractor Upright doc (Dr. Michael Flanagan) on Thisisms.com is at present the best source of information for me on this issue. Bones, muscles, ligaments – all the structural elements surrounding the CNS and in particular the spine need to be studied for areas of fluid obstruction. (A Brazilian Doctor succeeded in relieving some MS patients by diminishing muscles obstructing blood/fluid circulation. I don’t have any details.) Accidents may account for the obstructions, old sports injuries or congenital malformations which are exacerbated by stress induced muscle tension later in life. It makes sense that this form of MS surfaces with age. It’s primarily a skeletal disorder which impacts blood/cerebrospinal fluid circulation. I believe these patients should be treated by the appropriate specialty, probably a Chiropractor and SHOULD NOT BE included in a study of CCSVI. Opening a stenosed vein won’t help if the vein is obstructed by a bone.
The following are quotes taken from the Thisisms.com website under the CCSVI-CCVBP thread. Between Summer 2013 and spring 2014 upright doc made a series of posts which well describe the structural phenomenae.
“Feb 6 2014
Your doctor needs to lose the wooden shoes, put on some Nikes and get up to speed with the research. Venous hypertension myelopathy (disturbance or disease of the spinal cord) is a rare but well recognized disorder typically caused by arterial venous malformations (AVM) in which high pressure arterial blood bypasses the capillary beds and gets shunted directly into the veins which causes edema and ischemia due to decreased perfusion pressure gradients. Venous hypertension is also a recognized case of ischemia in traumatic spinal cord injuries. Lastly, recent studies suggest that obstruction to venous flow may play a role in hydrocephalus. What is unknown is the role of spondylosis (immobility and fusion of vertebral joints) in causing chronic venous hypertension due to compression of the vertebral veins and subsequent ischemia resulting in neurodegenerative processes in the cord and possibly myelopathy. I further suspect that spondylosis may also play a role in decreases venous flow and subsequent neurodegenerative processes in the brain.
Myelopathy – disturbance or disease of the spinal cord
Spondylosis – immobility and fusion of vertebral joints
Feb 4 2014
Spondylosis and venous hypertension that can cause chronic ischemic degeneration of the cord and possible myelopathy applies to many patients with MS such as Blossom and Dania. MS associated with cord signs tends to be more progressive and cause greater disabilities. Compressive myelopathy needs to be addressed early before damage to the cord becomes permanent. Endoscopic surgery is very effective, minimally invasive and cost effective but surgeons don't see the connection yet.
The links below are to case studies involving venous hypertension myelopathy.
Feb 4 2014 Hello Robert,
The epidural space is located between the spinal cord and the bones of the spinal canal. The epidural space contains the vertebral veins. Ask the doctor if the spondylosis in your case is compressing the epidural space and vertebral veins. If it does, then ask the doctor if compression of the vertebral veins can cause venous hypertension. If it can, then ask the doctor if he thinks that venous hypertension decrease perfusion of the cord resulting in chronic ischemia, which is a decrease in arterial blood flow to the cord. Also ask the doctor if he has heard of Dr. Wise Young. Dr. Young is a neurosurgeon is a neurosurgeon who specialize in traumatic cord injuries. He maintains that venous hypertension is one of the most overlooked cause of chronic ischemia and degeneration of the cord. Lastly ask the doctor if he is aware of a condition called venous hypertension myelopathy that causes signs and symptoms similar to compression of the cord. It is my opinion that spondylosis is a one of the most overlooked causes of venous hypertension and subsequent degeneration of the cord. It can also cause signs and symptoms of myelopathy in certain cases.
Jan 26 2014
Your chiropractor did make contact with me. I suggested that he treat you like a cervical myelopathy. It will help move blood and CSF flow past the obstruction in the cervical spine. It will also relieve compression and improve blood flow to the cord. I further suggested that he work the suboccipital area to improve blood and CSF flow between the cranial vault and spinal canal. Lastly I suggested he work your lower spine to relieve orthopedic issues related to your disabilities. You found a good doctor with a fantastic table. Your results are good so far so stick with it. It will maximize your potential and prevent further degeneration.
Immune cells can be called for or they can be forced into interstitial and CSF spaces and pathways. Red blood cells can also be forced into ISF and CSF in traumatic brain injuries. Chronic levels of increased immune cells is always irritating, as in allergies. It can also be destructive as in rheumatoid arthritis in body. The damaging effects of infections and encephalitis is well known and clinically demonstrated. Autoimmune-inflammatory immunological destruction of the brain is less understood and not clear as a cause of neurodegenerative conditions.
Removing damaged cells and debris may be the solution is some but not all cases. Improving blood (arterial and venous) and CSF flow, removing pressure and decreasing inflammation are likewise important, as are other therapies. It depends on the patient. Most patients with neurodegenerative conditions don't have autoimmune-inflammatory conditions. Blossom, Dania and Robert are good examples. Most patients with Alzheimer's could benefit from improved blood and CSF flow as well as cleaning-up damaged cells and debris, as well as pathogens caused by sluggish blood and CSF flow.
Excellent presentation by Dr. Hubbarb. I couldn't agree more. However, he left out stagnation due to obstruction of blood and CSF flow caused by malformations and misalignments of the craniocervical junction that affect the occipital marginal sinus and vertebral venous systems that are preferentially used to drain the brain during upright posture as proposed by Flanagan. Craniocervical syndroms are far more common and more likely to cause sluggish blood and CSF flow in the brain compared to insufficiency of the jugular veins.
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Far from being without available treatment, PPMS patients need to find therapists capable of detecting – and hopefully treating - the origin of their skeletal problem. In the meantime, every effort should be made to nourish the grey matter of their brains.
Do check out MS-UK’s Choices Pamphlet for PPMS revised August 2014 (which actually is good advice for all MSers).
Tags: Multiple Sclerosis, MS, PPMS, Chiropractor, MS-UK, Dr Michael Flanagan