Some time back, a friend of mine, another multiple sclerosis patient, asked me to lobby for inclusion of marijuana as a treatment for the ailment. This has neither been proven and nor do any neurologist recommend it. Why on earth should we lobby for this ?
At around the same time, a family friend of mine, who was also struck with MS, forwarded one mail to me. This said an Italian doctor had been getting dramatic results with a new type of treatment, Chronic Cerebro-Spinal Venous Insufficiency (CSSVI) for MS. This was again all over the internet and many people in India seemed to be exploring it.
She had emailed me many links and avocations from people all over the world, who felt this was the way to go. This actually still hadn’t been approved by the neurologists but most the patients felt was because they were not exploring it completely. In fact, most people were dejected that there was no formal approval.
The fact was, there were some patients who had not responded well at all, however as multiple sclerosis was said to be an ailment of people with different types of symptoms, there seemed to be justifications galore and no responsibility taken by anyone.
In most areas, I try to look at the positive side of life, but in the case of one’s health, I would rather be cautious. The U.S. Food and Drug Administration had actually issued a warning about the controversial and experimental vein procedure for people with multiple sclerosis.
Some may say it must be because of the pharmaceutical industry, some may say it is because of lobbying but the FDA report has said it received reports of one patient who died from bleeding in the brain and one patient who suffered paralysis from a stroke after the treatment and mentioned that there were other serious complications reported, some of them being:
Stents migrating from a vein to another part of the body, including the heart.
Injuries to veins.
Blood clots in the jugular vein or the brain.
Cranial nerve damage.
I told my friend also to not go for this unproven therapy just based on the reports in the internet, however she was clear that she definitely wished to explore it. Fortunately , nothing drastically bad happened to her but neither has she got better either.
Again, here, in all areas, related to neurology I do trust my neurologist, Dr J D Mukherjee, who has been there for me whether I happen to be and always motivated me to lead a complete life.
We as patients, we must have trust in our doctors as otherwise it would be extremely difficult, if not impossible to get better. One must realise that most neurologists do want their patients to get better.
In most patient-doctor relationships, there may be arguments, disagreements and even conflicts, but unless both agree that the goal is the same, life for both would be a great challenge.
We do have many challenges, people, but surely we do not need to add yet another unnecessary one by NOT trusting our doctors.