“Primary Progressive MS (PPMS) concerns about 10 to 15% of MS cases. In contrast to RRMS (Relapse Remission) cases, the disease progresses continually without respite after striking an older population (age 40’ and 50’s). Unlike RRMS, there is little to no inflammation, there are fewer brain lesions, the lesions which do exist present fewer inflammatory cells, and more are found on the spinal cord than in the brain which leads to mobility problems. While PPMS cases exhibit less inflammation, there appears to be greater damage to the axons.”
PPMS patients are not included in MS drug research and treatment because both target the myelin damaging inflammation of RRMS. Now, if an entire subset of patients is excluded from research because they do not conform to the auto-immune theory of MS, maybe the theory itself is suspect. When Neurologist Dr. Hubbard’s son Devin (see Hubbard Foundation) developed MS, after intense study Dr. Hubbard determined that the auto-immune theory of MS had not been demonstrated and arranged a successful angioplasty treatment for his son to free obstructed venous blood flow from the brain.
However, in my opinion angioplasty would be harmful to most PPMS patients. Why? Because I believe their blood/cerebrospinal fluids are obstructed by the body structure – bones, muscles, ligaments. We have 2 major pathologies sharing the same name. CCSVI MS describes defective veins whereas orthopedic MS describes a damaged body structure. In both cases the blood/cerebrospinal fluid circulation is obstructed or slowed but effective treatments differ, in the one case the veins need to be addressed, in the second the body structure.
Returning to my experience, ! have known increasing back tension since June of this year. Disturbing symptoms have manifested in my “good” left leg – the muscles “hug” the foot and ankle up to the thigh, the quadriceps muscles are increasingly weak in both legs. My acupuncture Doctor who is also an Osteopath adjusted my back (a bit) at least once a month, but it has been 2 months since treatment. BIG MISTAKE.
One recent evening when I rose from my desk after working on this blog, the blood circulation to my left leg had been “cut-off”. I shook out the pins and needles sensation until the circulation resumed. (Everyone knows that phenomena after lying on a limb which “goes to sleep”, it isn’t peculiar to MS.) At the same time it occurred to me that the circulation of fluid in my spine had been obstructed. In consequence my gait was clumsy until I had given time for the spinal fluid to resume circulation. Before going to bed I asked my husband to briefly massage the muscles descending the back parallel the spine to better release spinal fluid circulation flow and in consequence I knew immediate relief.
In consequence of this observation I will need to revise my entire site to take into account the need to stimulate the spinal CSF circulation and/or treat a damaged cord.
I was hugely relieved by the Osteopathic treatment 2 days later. I referred the Osteopath to my site, explaining the venous blood “reflux” theory (CCSVI) of MS, adding I could now see that CSF circulation was equally important. He said that it is precisely CSF circulation that Osteopaths work to liberate’, that the flow (he mentioned “pulsation”) needed to be released from head to pelvis. Osteopaths also do cranio-sacral therapy. He said I was so tense that the base of my skull was hard as a rock rather than supple as it should be.
Thirty five years ago a San Francisco body worker warned me that the tension in my back was so extreme it could lead to serious deterioration of the spine. This has come to pass with Progressive MS. I will need to revise my entire MS Cure Enigmas site to take this clarification into account. My post "MS: The Rigidity Disease" of July 4, 2013 well describes what I consider a common MS phenomena.
Not only must the blood flow freely from the brain, the Cerebrospinal fluid must flow freely throughout the central nervous system. Daily massage of my upper back AS WELL AS the muscles descending parallel the full length of the spine will help maintain the circulation. Dr. Wahl’s lower back electromuscular stimulation works to free BOTH blood and CSF circulation (not just the blood as I originally wrote.) In my TENS Acupressure treatment I must add Bladder 25 points at the waist on the bands of muscles parallel the spine to release spinal fluid circulation.
I’ve just had a scare, my functioning left leg began to deteriorate. The Osteopathic treatment stopped the crisis “attack”, now I’ll try to optimize my healing efforts to recuperate. (Diet, supplements etc) I will see the Osteopath again in 3 weeks. I must NEVER go more than a month without treatment.
Working on the computer isn’t good for me. My head tilted back to look at the screen cuts off the fluid flow from the head. My back tenses up. I’ve decided to read the computer screen standing up, and minimize my time sitting before the screen.
Returning to my work on PPMS:
Dania on Thisisms.com undertook an active, indeed heroic search for recovery from her PPMS. She underwent unsuccessful stem cell treatment (no, it wasn’t an auto-immune problem), traveled to Bulgaria for angioplasty which left her worse off (no, the veins weren’t the problem), underwent jugular bypass surgery (still not the veins), saw her jugulars shrivel into useless tissue, saw the stent in her jugulars deform (looks like a bone was obstructing the vein), AOL (Atlas Orthogonal) didn’t help (it wasn’t a problem with the cervicals) and any number of therapies. Eventually she discovered her problem was structural, a degeneration of the lower spine and spinal cord, probably the consequence of falls from a horse when young. (The Chiropractor Dr. Damadian feels it takes up to 11 years for an accident to manifest as MS.) Degeneration of the spine and spinal cord manifest with aging which would account for the late onset of PPMS compared to RRMS. When I hear that a physically active male in the construction business (for example) develops MS after age 40, my first thought is that the neck and spine have been compressed/ injured. (In one case he couldn’t even return to the house after walking to the mailbox. What could that have to do with an immune system attack? I presume increased pressure on the spine, perhaps the cord itself, led to paralysis. )
Dania eventually concluded on Thisisms.com (June 25, 2013) “Dr. Sclafani answers some questions” thread:
“ If my experiences helps anyone, so much the better. I completely drained my retirement funds. If I had known what is my particular problem I would have done everything differently.”
On June 25, 2013 Chiropractor Dr Michael Flanagan (upright doc) on Thisisms.com under the thread “CCSVI CCVBP” summarized the question as follows:
“I understand Dr. Scalfani's point as to why he prefers angio and IVUS for determing venous flow problems due to stenosis and faulty valves. Angio and IVUS are certainly much better at assesing those types of stenosis and blood flow problems. On the other hand, angio and IVUS are not the preferred method of diagnosing stenosis of the spine and obstruction to CSF flow as a result of increased venous pressure in the Vertebral Venous Plexis (VVP) due to spondylosis (immobility and fusion of vertebral joints), stenosis and scoliosis of the spinal canal. Spondylosis, stenosis and scoliosis affect the design of the canal, which affects hydrodynamics and CSF flow in the cranial vault and spinal canal. The faulty hydrodynamics get worse during upright posture. X-rays and upright MRI are much better than angio or IVUS for determining these problems.
The other point is that angio and IVUS don't rule out potential structural causes of obstruction to venous flow into the Vertebral Venous Plexus (VVP) during upright posture. Venous blood preferentially drains into the VVP during upright posture, not the IJs (Internal Jugulars). The upper cervical canal is a key point of obstruction. Angiograms also expose patinets to much more radiation than basic x-rays of the spine and MRI so it makes more sense to get them first to rule out
and fix potential structural problems first, espeically if they obviate the need for further more invasive intervention. Treating underlying structural problems may also help improve the durability of venoplasty and stents when necessary. Certain structural problems may also help surgeons better choose between venoplasty versus shunts, such as in a case like CurIous associated with cervical kyphosis and deformation by the transverse process of atlas. I further suspect that venous insufficiency in the azygous and iliac veins can similarly be caused by structural issues such as spondylosis, stenosis and scoliosis of the lower spine due to their impact on myofascial tunnels and pressure gradients.
June 25 9:28 am
Structural issues in the spine that affect blood and CSF flow in the cranial vault and spinal canal are far more common and likely a cause of MS, as well as other neurodegenerative diseases than problems in the jugular veins or TMJ for that matter. It makes sense that lesions are often found in the area of spondylosis,bone spurs and stenosis. Spondylosis, stenosis and scoliosis alter the design
of the tunnel of the spinal canal. When you change the dimensions and design of a tunnel or pipe you alter the flow of fluids through it. It's basic physics…
Dr. Flanagan (upright doc) analyzed the situation of Blossom (bone spurs in the mid cervical spine caused by an accident), Dania, and eventually Robni whose spine was injured playing soccer as a child. Dania and Blossom both could demonstrate improved mobility just by changing body position. Robni wrote on CCSVI CCVBP
Sept 9, 2014
“I was thinking about stopping te chiro treatments, but i went to George yesterday again after two months (holiday etc).
last week i could only standup behind the walker, yesterday evening i walked about 5 meters.
Plus i feel more energy today.....i'll continue...
upright doc’s response
“You are still young and have a long way to go. Your condition causes structural imbalance and chronic strains that can cause co-morbities (secondary problems). You need to keep your spine in the best condition you can to prevent further degeneration of the spine and spinal canal. The Cox 8 Flexion-distraction table is the finest traction type table currently available for rehabilitation of spine. In the hands of an expert in offers tremendous flexibility in addressing a multitude of issues associated with the spine and spinal canal. It can mobilize all the segments of your spine in all their ranges of motion as well as circumduction (circles). It can also be used to move blood and CSF flow past obstructions in the spinal canal, which will increase blood flow to the spine and cord. It is a very fine table... You should get your spine stretched and worked on periodically”.
On Nov 7 2014 upright doc wrote
“I don't recall seeing lesions in the cord but it's not necessarily the lesions of the cord that is the problem. It's what caused the lesions in the cord that causes a worse outcome such as PPMS. It's been my experience that they are usually associated with significant pathology of the cervical spine. Spondylosis and stenosis of the cervical spine can affect circulation to the cord. It can also affect the tracts of the cord.”
Dania’s testimony on May 9, 2013 reveals the effectiveness of chiropractic treatment on a damaged spine as follows:
“It has been 3 weeks(6 treatments) of spinal decompression on the Cox 7 table. I am improving every day. My contracted muscles, which effected about 90% of them has been reduced to about 20%. I can type with both hands again, pick up them with my left hand, sitting straighter, my left hip which was pulled in to the right is moving back to where it should be, heat tolerance better, muscles in bowels working again, food tastes better/more normal, stomach is growling again, sensation of touch/feeling becoming normal, physically much stronger/able to do so much more, dreaming again, jaw no longer clicking when I open my mouth, color in face use to very flushed now almost normal color, stood up this evening and turned off the light on the fan on top of the stove (been at least 6 months since I last did that), muscles in my legs starting to work again... I could go on and on. I am thrilled at the progress and the Dr Huang, the chiro, is pleasantly surprised. He did not expect any changes, very skeptical. I told him I would get better but I could tell he was not optimistic. I believe he has changed his mind. He feels the changes in my body. I was so stiff the first time. My muscles were so contracted I was almost a statue. He probably though I was too far gone. Well, Dr Flanagan we will prove those who do not believe that it is possible.
A million TYs”
For me these improvements imply pressure on the spinal cord itself had been released. Several weeks later a seemingly minor accident “snapped” her neck which apparently put an end to these improvements, and as far as I can tell led to a serious deterioration of her condition.
I will resume the subject of Progressive MS treatment in my next post. I realize this post is incomplete, but my observation that PPMS is actually a problem of cerebrospinal fluid obstruction (and spinal pathologies) hopefully will send patients to an Osteopath, a Chiropractor with an advanced COX table, even a massage therapist.
Tags: Progressive MS, Spine, Cerebrospinal fluid, Treatment, Chiropractor, Osteopathy, COX table, Massage, PPMS