Dancing with Life (7 page)

Once again, I reminded myself that Ayurveda had not really worked for me and decided I would only explore it again at a later stage if I had the time to complete an entire course at a reputed Ayurvedic clinic.

Siddha Healing

Siddha healing is one of the oldest systems of traditional medicine in Tamil Nadu. Siddha medicine is mainly based on the five elements that constitute the human body as well as the three
doshas –
namely
, kapha, vata
and
pitta.

In 2009, a friend of mine asked me to meet a Siddha healer in Bengaluru who gave me some medicines and advised me to cut out protein from my diet. His instructions were not too difficult to follow as the things he told me to avoid included
rajma
(kidney beans) and beetroot which were not my favourite foods anyway.

However even after a while I could not see any improvement in either my issues with incontinence or mobility. Instead my menstrual cycle and digestive system went haywire.

My next experience with Siddha healing was when my sister-in-law brought some Siddha massage oils for me to try as she had heard that they were beneficial. I tried to follow her instructions but after a while I gave up as they didn’t seem to be working.

Blood Group Analysis

One day my aunt forwarded me an email about one Dr Peter D’Adamo, who had written a book
Eat Right for Your Type
.
¹
The foreword said that those whose blood group was B Positive were more likely to get MS. The e-mail contained dietary guidelines for people of all blood groups. According to this doctor, people who belong to the B Positive blood group can consume unlimited amounts of dairy products without a problem which is not so in the case of people who belong to other blood groups. My aunt’s intention behind forwarding this mail was to make me resume consuming dairy products which I had given up due to naturopathy. My blood group happened to be B Positive. I then forwarded this mail to people in MSSI asking about their blood groups. I was trying to check if there indeed was a link between B Positive blood group and MS, and sure enough there were a few but there were also others who had a different blood group.

While I could arrive at no definite conclusion regarding the link between blood groups and illness I did start consuming dairy products again.

Chronic Cerebro-Spinal Venous Insufficiency (CCSVI)

There was and still is a lot of discussion and hype in the media, especially on the Internet regarding the latest ‘breakthrough’ treatments for MS.

Sonia (*name changed), a mother of two in her mid-thirties was initially treated in 2006 for depression and mood swings. Nobody realised that she was actually suffering from MS. Her family was naturally extremely concerned about her. In 2009, after several sessions of psychiatric counselling and psychotherapy, a doctor suggested she get an MRI test done. It was then that Sonia learnt she had MS.

As Sonia was a family friend and knew I also had the same disease, she got in touch to ask what she could do in order to get better.

I told her to have faith and shared all the information I had and lessons learnt on my MS journey. Of course, just like the most of us, she also couldn’t resist doing her own ‘research’ on the disease on the Internet.

In 2010, Sonia forwarded me an e-mail which detailed how an Italian doctor named Paolo Zamboni had been getting dramatic results with a new type of treatment – Chronic Cerebro–Spinal Venous Insufficiency (CSSVI) for MS.

This treatment was discovered by Dr Zamboni in 2009. He had put forward the idea that many types of MS are actually caused by a blockage of the pathways that remove excess iron from the brain – and by simply clearing out a couple of major veins, the root cause of the disease could be eliminated.

Dr Zamboni had personal reasons to find a cure as his wife was also suffering from MS. While reading everything he could on the subject, Dr Zamboni found a number of century-old sources citing excess iron as a possible cause of MS. It was also cited that 90 per cent of people with MS have some sort of malformation or blockage in the veins that drains blood from the brain.

This information gave Sonia hope and she sent me many videos and articles by people all over the world eulogizing this treatment, which seemed like a miracle to many MS patients. Sonia also decided to go ahead with the option of CSSVI.

CSSVI hadn’t been approved of by neurologists and many patients on the Internet wrote that this was because the neurologists were not exploring the option properly. In fact, many comments on the Internet forums seemed to be written by people dejected that there was no formal approval from medical bodies for CSSVI.

*
The US Food and Drug Administration (FDA) in 2012 had actually issued a warning about this controversial and experimental vein procedure for people with MS. This FDA warning said it had received reports of one patient who had died from bleeding in the brain and one patient who had suffered paralysis after the treatment. The FDA report mentioned that serious complications had been reported after patients took CSSVI, some of them being:

• Injuries to veins
  
• Blood clots in the jugular vein
  
• Cranial nerve damage
  
• Abdominal bleeding
  

The fact was that there was no formal approval because the treatment had major health risks. Still, since there were so many positive reports as well, I consulted my neurologist, Dr Mukherjee about it. He said many people had asked him about this treatment but he personally would not recommend it because of the high level of risk. Dr Mukherjee spoke to me at length about this treatment and convinced me that I should not even think about putting my life in jeopardy.

After speaking to him, I tried to convince Sonia not to go ahead with this treatment. She however remained adamant and found a doctor in Bengaluru, willing to operate on her. The doctor himself promised no miracle and only told Sonia this treatment ‘may’ work for her. At that point, I silently noted the use of the word ‘may’. If a surgeon himself is not sure about a certain surgery perhaps the burden falls on the patient to really think about whether such kind of a surgery should be explored at all.

In the weeks after the surgery Sonia was made to follow a specific diet and routine but her condition did not improve at all leaving her disappointed and disillusioned by the whole experience. As family and friends we were just grateful that her condition did not worsen after this controversial procedure.

Stem Cell Therapy

Yet another option that I had heard about in 2009 was stem cell transplant which was supposed to help keep the symptoms of MS under control. Till today, this treatment has not been proven effective. Like CSSVI, it has received mixed reviews. While some people get better, others get worse, partly due to the treatment and partly due to the intense disappointment they feel when there are no visible results.

Through my circle of friends who had MS, I happened to come across Mihir Sharma (*name changed) in 2010 who had spent a lot of money to explore stem cell therapy but he had not benefited much. Even in India there is a lot of debate on the benefits of stem cell therapy in the medical fraternity. In May 2015 the All India Institute of Medical Sciences (AIIMS) announced that it planned to conduct advance stem cell research for MS. The proposal is still awaiting funding approval from the government.

Medical Marijuana

Marijuana made headlines in 2012 when reports emerged that a study had concluded that cannabis if smoked was superior to a placebo in reducing spasticity and pain in patients with MS and in capsule form was highly effective at managing many of the symptoms of MS.

At that time, a friend Priya who was also an MS patient told me I should write about the benefits of medical cannabis treatments in my capacity as a health journalist and even lobby for cannabis to be made legal for medical use in India.

‘I know if there is more lobbying, doctors will prescribe it to us as a medicine,’ she said. Priya had seen an Australian TV show where apparently an MS patient had responded well to medical cannabis treatments. Once again I realized that just like CCSVI, it was marijuana’s turn to shine as a symbol of hope. I wondered what would happen if it became an addiction. Wouldn’t that then require a separate treatment to treat the addiction? I wonder how many neurologists would recommend it to their patients.

There is a lot of research going on in the area of neurology. Nowadays, every little thing is published in the media, and especially on the Internet. This allows most of us do a lot of medical research on our own.

Here, it is important to remember that the doctor plays a key role in guiding his patients through the maze of medical information and misinformation available today.

Having a good doctor on call is essential or life can become very challenging. Especially in case of an ailment like MS that does not have a definite cure. As of now we have to understand that having regular communication with our neurologist is in our best interests.

One must realize that most doctors want their patients to get better. If one has been unfortunate to come across a doctor who is not of this type, then the best thing to do would be to find a trustworthy doctor as soon as possible, preferably one who comes highly recommended.

I think it makes good sense to make a checklist before you decide to explore any kind of treatment or therapy. Here are four points which I think are particularly relevant.

First, have you met other people who have benefited from this therapy?

Today, anyone can post anything on the Internet and even some media reports and articles lack clarity, doctors are misquoted, information is not attributed to the correct sources or the story is not well-researched. Since one cannot rely on all that one reads it makes perfect sense to meet the people who have benefited from a therapy, if possible, in person or have a chat with them on the phone. Not only is this a foolproof method of gaining information there is so much to learn from other people’s experiences.

Second, ask people who underwent a particular therapy how they felt after a year. Instead of looking for instant results try to look at the long-term effects of a particular treatment. To illustrate the point one only has to look at the story of the Thalidomide tragedy. Thalidomide, an anti-nausea drug and sedative that was introduced in the late 1950s, was initially recommended for use as a sleeping pill. It was soon discovered to help pregnant women with the effects of morning sickness too. It was sold from 1957 until 1962, when it was withdrawn from the market after overwhelming evidence that Thalidomide caused miscarriages and birth defects. Eventually it came to be known as the Thalidomide Holocaust as it maimed 20,000 babies and killed 80,000. War apart, it remains one of the worst manmade global disasters in living memory.

On 31 August 2012, Harold Stock, the CEO of the Grünenthal Group, the pharmaceutical company that created and marketed Thalidomide, publically apologized for the first time for producing the drug but remained silent regarding the thousands of lives this drug had ruined. At a ceremony, Stock unveiled a statue of a disabled child to symbolize those lives blighted by Thalidomide and apologized for not trying to reach out to victims and families who had suffered for the last fifty years. At the time of the apology, there were five to six thousand Thalidomide victims still alive. Some children had been born with no arms, some with no legs while some had no limbs at all. Many others were born severely disabled. While some victims went to court and received monetary compensation nothing could make up for the amount of physical and emotional suffering they and their families were forced to undergo.

In a disease like MS, the principle is the same. Avoid drugs if you can and wait for a long enough period to see if there are any kind of side effects. As far as surgery is concerned, the principle is the same. There are many drugs and so-called surgeries which provide only temporary relief, but can have major repercussions later on.

Third, ask if this particular therapy would interfere with any other medication that you are taking currently.

This is a question your doctor can answer but you must remember that your body cannot handle too many medicines at the same time. As I had written earlier, the medicines I had taken during the Siddha healing course had given me some relief at first, but just after a few days my system went completely haywire. Perhaps this was because I was also on a naturopathic diet.

Fourth, have you informed your neurologist that you are exploring a certain therapy?

As MS is a neurological disorder, we must remember to keep our neurologist informed, especially if the new therapy involves surgery or medication. We must remember, time and again, that our doctors are only doing their best and if any therapy is a universal tried and tested success, we will get to know of it. We also must realize that there are many types of MS and what works for one person may not work for another. Schedule an appointment and speak to your neurologist if you have any doubts or questions about an ancient therapy of a new breakthrough drug or gadget. Chances are he/ she may know more about it than you and certainly nobody would be happier than your doctor if your health were to improve.