Diagram of the ODFS

They found that people with multiple sclerosis using the stimulator increased walking performance, compared to the exercise group and also experienced fewer falls.

authors: Esnouf J, Taylor P, Mann G, Barrett C.

source: Mult Scler. 2010 Jul 2

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These results suggest that UVR is likely suppressing the disease independent of vitamin D production, and that vitamin D supplementation alone may not replace the ability of sunlight to reduce MS susceptibility.

This of course reinforces the fact that there is a much higher incidence and prevalence of MS as you move away from the equator

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In some studies, pet owners reported reduced fear, improved self-esteem and significantly fewer minor health problems and emotional concerns than people who had no pets. But it has also been shown that it is not necessary to actually own the pet in order to receive some benefits from an animal-human “relationship”. The mere presence of a friendly animal can be beneficial as well. “Visiting pets” or “therapy pets”, are just two of the names given to describe programmes in which animals help people just by visiting them. This may be an interesting possibility for people with MS who would have significant difficulties taking on the responsibility of their own pet due to problems with balance, mobility and co-ordination, fatigue and other MS symptoms.

To learn more about pet therapy visit:

http://www.deltasociety.org

http://www.petsastherapy.org

But what else can a dog do for you ?

Did you know that (in th UK at least and in may other countries) nearly all form forms of transport have facilities in place to carry assistance dogs with their owners. They have a duty under the Disability Discrimination Act (DDA) to provide services to enable assistance dog’s owners to travel.

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Interestingly the most common areas for this type of pain are the face, neck

and torso so let’s start at the top with TGN

Trigeminal Neuralgia

TGN is an excruciating, sharp, shock-like pain in one side of the face, lasting seconds to minutes and often repeated; may be triggered by speaking or a touch. It usually settles spontaneously by itself over several weeks. Unfortunately many of the side effects of the usual drugs mimic the symptoms experienced in MS anyway so it is difficult to tell the cause and it may lead to alarm that the disease is getting worse. To allay these fears I have outlined the usual side effects of each drug,

Usual medications

Carbamazepine (anticonvulsant): Side effects Drowsiness, Dizziness, Coordination difficulties

Phenytoin (anticonvulsant): Side effects Dizziness, Nausea, Insomnia, Uncontrollable eye movements, Coordination difficulties, Slurred speech, Confusion

Baclofen (muscle relaxant): Side effects Weakness, Drowsiness, Dizziness

Gabapentin (anticonvulsant) may also help: Side effects Dizziness, Coordination difficulties, Fatigue

Lhermite’s Sign/Symptom

This is a  brief, stabbing, shock-like sensation that runs from the back of the head down the spine, (like an electric shock) brought on by bending the neck forward. It is not always painful.

Usual medications

Carbamazepine or Phenytoin (see above)

Other treatments

A soft collar may limit neck movement. Most often Lhermite’s symptom disappears spontaneously and medical treatment is not necessary.

Tonic Spasms

These, known as spasticity are sudden and painful muscle contractions, producing stiffness of the whole limb, which can last up to two minutes.

Usual medications

Carbamazepine, phenytoin, and baclofen (see above) and

Clonazepam (anticonvulsant): side effects Sedation, Dizziness

Dysaesthetic Pain in Limbs and Trunk

Dysaesthetic means any impairment of the senses especially the sense of touch

This is a condition in which light physical contact of the skin causes pain; Such as the weight of sheets in bed.  It involves a persistent burning, tingling, tightness, or aching which may be worse at night and after exercise It may be aggravated by temperature and weather.

Patients frequently state that dysaesthetic burning corresponds with what they imagine a hell might be like. Some of the descriptions given by patients include:

- “Like Hell’s hottest knives tearing at my flesh”
- “Like my flesh is being consumed in a fire”
- “Like my flesh is being torn from my body”
- “Like my flesh has been burned off”
- “A pain worse than pain”
- “Indescribable burning”
- “Like an alien pain monster has taken over my body and has ignited my flesh”

Usual medications

Nortriptyline and amitriptyline.(anti-depressants): side effects Dry mouth, Blurred vision, Sedation, Urinary retention

Gabapentin, (see above)

Tegretol (Carbamazepine – see above) and Epilim (sodium valproate – anti epileptic) may also be useful.

Side effects of Epilim nausea, diarrhoea, increased appetite and weight gain, shaky movements, tremor, drowsiness, confusion, temporary hair loss

Other treatments

• Application of cold, pressure stockings
• Capsaicin ointment/cream. Capsaicin is the active ingredient in chilli peppers. It’s what gives chilli peppers their kick. When it is applied to the skin, capsaicin cream has been found to deplete substance P— a neurochemical that transmits pain—which desensitizes a person to pain. Capsaicin cream produces a temporary reduction in pain, so it must be used regularly to provide prolonged pain relief.

Capsaicin can cause an intense burning feeling when it is applied, particularly if it is used less than 3-4 times a day, or if it is applied just after taking a hot bath or shower. However, this side-effect tends to ease off with regular use. Capsaicin cream should not be applied to broken or inflamed skin. Wash your hands immediately after applying capsaicin cream.

In my next article I will be discussing secondary pain in MS.

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Inclined therapy is simply tilting the bed so that the head end is 15 cm or 6 inches higher than the foot end providing a level but tilted bed, hence the name Inclined Therapy. You can do this very cheaply by building up your bed with blocks of wood. It has been used very successfully for varicose veins but also with Parkinson’s disease and more recently with MS . It seems that something very simple has wide-ranging health benefits.

Inclined Therapy is advised by doctors for people with decreasing respiratory function but it is generally not recognised and Andrew is forced to do his own experiments.
Are there any difficulties with it ? The first 2 weeks of Inclined Therapy can cause aching in the spine and a stiff neck, aching muscles also. If you could revert back to sleeping flat it may prove one way or the other how much inclined therapy is or is not doing for you.

The next section is from a forum post I foujnd from Andrew

In February 1996 I began taking part in Andrew Fletcher’s Experiment to assess what would be gained by sleeping at an angle.
As instructed I raised my bed by six inches at the head and expected to slide to the other end. Fortunately that did not happen. But after a few weeks I started to notice a change in my multiple sclerosis symptoms.
I first of all noticed a significant change in my circulation. The right foot was no longer uncomfortably hot during the evenings, and the signs of impending varicose veins in my legs disappeared.

Walking became much easier, especially after I tried using a dehumidifier in the bedroom to control the moisture levels in the atmosphere.

Another very pleasing improvement was in the use of my right hand, I began to write more legibly and to handle cups and cutlery with greater ease.

In September 1996 I mystified my optician when a routine eye test showed a marked improvement in the MS damaged right eye. Six months later more visual improvement was found.

This was an unusual occurrence and could only be explained by the action of a healing process in the optic nerve. The optician was very interested in Andrew’s experiment and contacted him to find out more!

Other members of my family have also been involved in the experiment. We raised my teenage daughter’s bed by the same angle in an attempt to alleviate a life long insomnia problem.
To our astonishment she slept soundly the very first night!

It goes without saying that we shall not be reverting to sleeping horizontally, but intend to continue using Andrew’s healthier alternative.

Endnote from Andrew

Pauline’s eyesight improved so much that she is now legally entitled to drive a car without wearing spectacles.

Pauline and Joyce both had supposedly iriversible optic nerve damage caused by long term progressive ms.

Conclusion

The Dead Sea Scrolls Translations show that ancient beds may have been tilted. I have also been informed that in Canada there is a very old fort that holds two gigantic sloping beds that can sleep 12 people. The answer as to whether changing your bed could assist your gradual improvements is yes, having a slope on a bed from head to toe is what we should be trying to achieve.

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Stem Cell Treatment

Stem cell treatment involves topical injections and requires only a few hours stay at one of the 12 international clinics. In a typical MS case, there are multiple injections of the contents of a single vial of stem cells. These are injected into the skin/fat layer over the spine and one or two seriously affected areas of the body (e.g. into the vein of an unusable hand, or into the skin near an eye with visual problems.) They are not injected into the central nervous system (brain and spinal cord) itself. However, the exact way the stem cells are administered is specific to each MS patient. The focus is on areas of greatest need. Cells are injected into specific sites of demyelination as indicated by a MRI report and into areas of greatest clinical need.

This method of Patient Specific Injection Protocol appears to deliver the fastest and strongest responses recorded.

If there is damage to the brain – stem cells are injected into the skin using the surface anatomical markers of various regions of the brain. For example if there is damage to the cerebellum, the injection of stem cells would be subcutaneously over the occipit (back of the head). There are no risks involved in this. The stem cells are able to reach damaged areas in the brain by traveling through the bloodstream. This is very straightforward as cord blood stem cells are derived from blood. One of their primary functions is to migrate to sites of need in the body through a process called homing. With homing to the brain, the blood brain barrier opens up to accept stem cells as it does for any other blood cell. In addition, a drip can be given intravenously an hour before the stem cells treatment to cause a slight dehydration of the brain making the barrier more receptive.

In MS, the damage in the brain and spinal cord does not follow a predictable pattern. Also, the findings of plaques shown on an MRI scan do not necessarily correlate with the degree of clinical severity. This makes the process of injecting directly into the brain matter or spinal fluid problematic as well as incredibly risky. For these reasons the stem cells are injected into the skin over the spine and brain and not into it.

Data shows benefits derived from stem cell therapy in both Progressive and Relapsing/Remitting types of MS. However, the type and speed of benefits, extent of regeneration and biological methods by which regeneration occurs may differ from PP to RR; however results are consistent in both types. All the above variables differ vastly from case to case within the categories of PP to RR, making it difficult to compare categories. Study groups are planned to generate a more specific answer to this question. The most important factor between cases noted to date is not the type of MS, but prescription medications (ABC drugs, antibiotics, chemotherapy) which – due to inherent toxicity factors – inhibit stem cell activity and significantly reduce the probability of benefit.

Once the stem cells have been injected they travel to the areas of damage/demyelination/inflammation via a process called ‘homing’. The stem cells follow the bodies naturally-produced chemical signals released when the body is under stress, damage or repair. These messages attract stem cells to the areas in need. Once the stem cells reach their target there are five main mechanisms, or combinations of mechanisms, by which the stem cells contribute to neurological repair. These are:

1) Transdifferentiation: Once mature, the previously primitive cells assume the function of a more specialized cell type.

2)Transdetermination: Redirection of a cell to produce other types of cells. e.g., a bone marrow stem cell may in fact start to produce cartilage or neurons.

3) De-differentiation: Mature cells are triggered to move back up the hierarchical ladder model to become able to produce any kind of cell.

4) Fusion: The stem cell fuses with existing cells to create a ‘super-cell’ that has access to suppressed DNA and is able to perform neurological repair.

5) Trophic Support: Stem cells produce growth factors that encourage the repair using existing cells.

Treatment Logistics

The time needed in clinic for pre-treatment examination, injection and monitoring is around 3 hours. The injections themselves take under five minutes.

Some clients report a warm rushing sensation following the injection and mild sleepiness for several days. Others report a boost of energy and euphoria. Some people experience nothing notable at the time of treatment but report clinical benefits later.

The therapy is designed to function as a single treatment and each case is assessed for future treatment needs on an individual basis. In each case, goals must be set regarding desired treatment benefits. If these goals are not met by the first treatment, there may be a need for booster treatments. Follow ups are done at regular intervals by the consulting physician and Follow-Up Coordinators. The cost of treatment is currently 19,500 euros while re-treatments for clients treated in 2005 are offered at a discounted rate of 10,000 euros.

The Treatment Outcome

In best case scenarios, progressive cases have returned to normal function and retain these benefits past the one year mark and don’t require boosters.
ACT has developed a Rating Scale based on the patients’ own subjective reports of the benefits the patients consider important to them and their daily activities.

Rating 1: A significant or life changing benefit for that individual (e.g. bladder control; sexual function; hand function.)

Rating 2: Multiple benefits that meet the patient’s personal goals.

Rating 3 (highest rating): An overall response beyond the expectations of both the patient and conventional doctors.

Jan Wilks experienced results very quickly which happens occasionally. On average, treatment benefits usually peak between three and six months after treatment then plateau at one year.

Booking Your Treatment

You’ll work exclusively with treatment representatives, in-house physicians, booking coordinators and follow-up specialists who arrange and follow treatments at 12 international locations in monthly treatment groups.

Booking Procedure:

Enquire via online enquiry form, specific email or phone.

A link to an online information package will be emailed or faxed.

Please quote the MSRC as the referring source.

You will be contacted by an ACT representative by phone to schedule a telephonic consultation with a consulting physician.

Consulting physician will cover all questions and medical issues. If treatment is booked at that time, a time will be scheduled for you to speak to the Bookings Coordinator regarding choice of location and date of the next available treatment group. The Bookings Coordinator will cover all logistical issues and send a provisional booking form.

Payment is made by international wire transfer and a final confirmation form is sent.

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Jan Wilks is only one of stem cell therapy’s success stories.

Multiple Sclerosis – a Cure?

Stem cell therapy is not defined as a cure for MS but as a treatment for this crippling disorder. The medical definition of a cure is a treatment which generates a remission in symptoms and normal diagnostic studies for five years or over. Data has not been monitored long enough to use the word cure. The term treatment is much more medically sound.

A stem cell is a primitive cell capable of producing many types of specialized cells. A stem cell communicates with the body to determine and travel to sites of need, to divide in a controlled manner to create a copy of itself and a copy of another more specialized cell required by the body and to assist the body to heal and regenerate its existing cells.

For Multiple Sclerosis stem cells work in three ways

1) By forming new neurons to replace the dead ones.

2) By replacing the dysfunctional and destroyed oligodendrocyes (myelin-producing cells.)

3) By coordinating the repair process via signaling cues to the existing cells. Cord blood stem cells also have the capacity to modulate the immune system and have consistently normalized markers of over-active immune systems in several in-house studies.

How Are The Stem Cells Produced?

Using specialized protocols the red and white blood cells are removed from the umbilical cords. This dispenses with the need for blood or tissue matches, and removing any associated risks. The purified stem cells are then expanded or “grown” in controlled laboratory culture to generate the high numbers needed for therapeutic application. During this process certain rare and very powerful subsets of stem cells (comprising 10% of the stem cells in a normal cord) are expanded to comprise over 70% of the total stem cell population per vial. These purified and potentiated cord blood stem cells are frozen using a specialized media. The components of the freeze media are FDA- (US Food & Drugs Administration) approved for human injection and significantly enhance viability: the number of thriving, healthy cells after defrosting. Post thaw viability using this specialized freeze media and a proprietary freeze method is more than 97%.

A Question of Ethics?

Stem cells are derived from umbilical cords with no right to life issues. Cords are obtained via informed consent donations from screened mothers of full term births, fully tested for infectious diseases using American Association of Blood Bank Standards.

Success Rates

The stem cells have been used to treat multiple sclerosis over 100 times with an average significant clinical benefit ratio of over 80%. The 80% success rate figure is based on in-house historical data. Preliminary analysis of updated data – including the data using the new site-specific injection – reflects more than 90% success rate. Different individuals have different responses. An analysis shows that 90% of cases who did not perform or performed marginally at first with no long- term benefit were taking toxic drugs such as beta-interferon (Avonex, Betaseron) chemotherapy (Novantrone) or antibiotics. It can be deduced that the toxicity or function of certain drugs may challenge or kill the stem cells or create other areas of need that would dilute the neurological progress. Beta-interferon is especially toxic to the liver consequently stem cells may prioritize that area for regeneration instead of the neurological system. Over 90% of all cases which performed with the highest rating had worked with their prescribing physicians to wean off the above drugs before starting cell treatment or had never taken them.

Good Candidates

Every single person is different and experiences a different manifestation of MS on a different schedule. Consequently every single person experiences his or her own route to healing. As with any medical treatment, it is extremely difficult to predict outcome. There are some patients who respond better than others, these include patients who:

Have not taken toxic drugs, have minimal or reduced heavy metal toxicity, don’t smoke, drink, take drugs or artificial sweeteners, eat a healthy diet with unadulterated nutrition for the cells including raw fruits, vegetables, and fat sources, do some form of physical activity/therapy and have highly positive yet realistic therapy goals.

The Risks

In more than 300 treatments no negative side effects have been reported; nor are there any medically or scientifically anticipated risks outside that of a routine outpatient injection. This is primarily due to the fact that all white blood cells have been removed from samples using a proprietary purification protocol.

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“The patients in this study reported significantly greater satisfaction with TYSABRI when compared to their previous MS treatments, which makes these data even more compelling for patients who may not be satisfied with their current treatment,” said William Stuart, M.D., medical director of the Multiple Sclerosis Center of Atlanta. “When coupled with previously reported data from this ongoing study that showed overall improvement in quality of life measures, we have a clearer picture of the real-world impact of TYSABRI on MS patients’ lives. The success of TYSABRI over the past three years should be an encouragement to move this drug to the forefront of treatment options in many select MS patients.”

About the Study

This ongoing study, which is the first attempt to evaluate patient experiences with TYSABRI in usual-care settings, will continue to assess health outcomes from the patients’ perspectives, with subsequent data collections, after the sixth and 12th TYSABRI infusions. A total of 1,275 patients were enrolled in the study. Of these patients, 702 completed the third infusion assessment at the time of the analysis. Of the 1,275, there were 224 patients who were still being contacted or had not yet reached their third infusion. Of the initial 1,275; 43 chose to no longer participate in the study, 60 had already received a fourth infusion, 53 were unable to be contacted and 193 discontinued or had never started TYSABRI treatment.

These patient-reported outcomes paint a broad picture of MS patients’ ongoing treatment experience, which helps us to measure the effectiveness of MS treatments and expand our understanding of their everyday impact. A majority of the patients in the study are female (78.4%) with a mean age of 45.3 years and mean disease duration of 10 years. Almost all (97%) patients had used at least one MS drug prior to receiving TYSABRI.

Patient satisfaction with treatment was assessed using the Treatment Satisfaction Questionnaire for Medication (TSQM) with higher scores indicating higher satisfaction.

In the study, patients’ attitudes towards MS drugs, with respect to effectiveness, convenience and overall satisfaction, at baseline (n=681) were compared to their attitudes to the same measures after three TYSABRI infusions.

As compared to other MS drugs, patients reported statistically significant higher levels of satisfaction after three infusions of TYSABRI with respect to:

• effectiveness of treatment (baseline 43.9 vs. 63.5 at the third infusion; p< 0.001);
• convenience of treatment (baseline 58.9 vs. 80.0 at the third infusion; p< 0.001); and
• global satisfaction (baseline 61.5 vs. 73.8 at the third infusion; p< 0.001).

About TYSABRI

TYSABRI is a treatment approved for relapsing forms of MS in the U.S. and relapsing-remitting MS in the European Union. According to data that have been published in the New England Journal of Medicine, after two years, TYSABRI treatment led to a 68 percent relative reduction (p< 0.001) in the annualized relapse rate compared to placebo and reduced the relative risk of disability progression by 42-54 percent (p<0.001).

In early 2008, TYSABRI was approved in the U.S. to induce and maintain clinical response and remission in adult patients with moderately to severely active Crohn’s disease (CD) with evidence of inflammation who have had an inadequate response to, or are unable to tolerate, conventional CD therapies and inhibitors of TNF-alpha. According to the U.S. full prescribing information, among patients who responded to TYSABRI, 54 percent sustain their response through every visit for one year compared to 20 percent of patients receiving placebo (p< 0.001), for a treatment difference of 34 percent.

TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML), an opportunistic viral infection of the brain that usually leads to death or severe disability. Cases of PML have been reported in patients taking TYSABRI who were recently or concomitantly treated with immunomodulators or immunosuppressants, as well as in patients receiving TYSABRI as monotherapy. Other serious adverse events that have occurred in TYSABRI-treated patients included hypersensitivity reactions (e.g., anaphylaxis) and infections. Serious opportunistic and other atypical infections have been observed in TYSABRI-treated patients, some of whom were receiving concurrent immunosuppressants. Herpes infections were slightly more common in patients treated with TYSABRI. In MS and CD clinical trials, the incidence and rate of other serious adverse events, including serious infections, were similar in patients receiving TYSABRI and those receiving placebo. Common adverse events reported in TYSABRI-treated MS patients include headache, fatigue, infusion reactions, urinary tract infections, joint and limb pain and rash. Other common adverse events reported in TYSABRI-treated CD patients include respiratory tract infections and nausea. Clinically significant liver injury has been reported in patients treated with TYSABRI in the post-marketing setting. TYSABRI is approved in more than 40 countries. For more information about TYSABRI please visit http://www.tysabri.com

Source:
Shannon Altimari; Biogen Idec
GCI Health

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