Navigating Neurologists

I just ended a painful diagnostics journey navigating a world of money-mongers across two cities and three hospitals. My wife, a few years back, developed instability in her movements, loss of strength in her feet, and a symptom called foot-drop.

About three years ago, our journey started with Dr. Rajashekar Reddi at Max Hospital, Saket. This man has a standard process that he follows. I know because me and my mom have both, at different times, been his patients. So it goes like this. Do an MRI of the brain and spine. This is like a full body scan, except you are looking at the nerve junctions — every time and every doctor reading it will find something wrong with everyone’s C-spine. Thankfully my wife’s symptoms were manifesting in her feet, and there was nothing wrong with that area of the spine. Or the brain. However, that was not enough to make a diagnosis. Dr. Reddi needed to make some more money for Max Hospital or himself, so clearly, an MRI had to have limitations. We moved to contrast MRI. As any person walking down the street could have predicted, that revealed nothing. Now, the thing with the neuro-muscular system is that there are many diseases the world knows very little about. So, as a doctor, if the top 5 diseases that he or she trades in have been negated, it must be one of the diseases that cannot be tested. So we were advised to do a Nerve Conduction Test to rule out Parkinson’s Disease. This was the time when COVID hit us. So we stopped this pursuit of diagnosis for a little bit.

Once COVID alleviated, we did the NCV. Now the thing with an NCV (as we were to learn later) is that the room's moisture and the platform's temperature can alter the results to show abnormality. And because the diagnostician was taking money, they had to add some value and mention abnormalities that would scare most people.

And with all the results, we went to Dr. Mayank Chawla, who came highly recommended, at Max Hospital in Gurgaon. We had had enough of Dr. Reddi’s testing and were scared of what new lab equipment, needing accelerated breakeven, we would get subjected to contribute to. Dr. Chawla was old school. So after looking at everything, we were given a list of things to get tested for. Thankfully all of that could be done with some blood. In hindsight, when Dr. Chawla honestly submitted that he was not sure but thought it was genetic, we should have stopped. But he pointed us to Dr. Puneet Agarwal as the authority on genetic abnormalities. Back to Max Hospital Saket, New Delhi, we went.

After looking through everything, Dr. Puneet Agarwal concluded that the tests were too old and everything needed to be repeated. He followed this up with, “Do you have insurance?” This should have been the warning bell we should have heard and run! But we got suckered into repeating all the tests and a nerve biopsy. Now there were several factors here. He was sure the insurance company would pay, and the progression would give us more information. So we went for another round of doctors making idiots of us. It took us 3 hours to get checked in / admitted (because in India, insurance does not want to spend less money if more can be spent). And the testing went into late in the night, along with a drip of vitamins and steroids, for no apparent reason except that the Doctor knew best or did not know what he was doing. It took us all day to get queued for an MRI and another full day to meet a surgeon to pull out a piece of nerve. The stitch this surgeon put on my wife’s feet looked like something I could have done but with more finesse. It’s now a permanent mark.

Just for context, I was fathered by a Doctor. So I have grown up around patients, doctors, and bad and good doctoring. And I have had my fair share of stitches. So I can confidently tell you that this was decidedly shabby work. But now, because there was so much money to be billed, there has to be a report that scares the patient. We were getting used to it, so we did not get scared. He recommended that we continue steroids and return to him for more extortion; we were beginning to do some deep Google research. CMTD seemed like the winner based on our layman's research and based on all the nonsense we had heard. So we decided to go to NIMHANS, India's premier institute of neurology. This was a Government run outfit, so it promised to have more competent people not trying to make money.

Returning to the Max Hospital experience, our insurance payor declined whatever Billing submitted, and what was resubmitted did not do any better. So at 1 AM, after being hived off to a different insurance desk, I decided to pay with my Credit Card and ration through my salary next month.

We flew from Gurgaon to Bangalore to talk to someone who would not rob our pockets. After making my wife trot around and feeling muscle strength in various limbs, the premier institute of neurology came up with the icing on the cake equivalent of advice, “We need to do a muscle biopsy!”

At this point, we decided not to subject ourselves to any invasive procedure until we had a diagnosis. So we kept researching until we came across an outfit that did whole genome sequencing. And they came back, after six weeks of waiting, with a definitive diagnostic. My wife had a very rare genetic deformity resulting in a disease called GNE Myopathy.

So, with this report (which should ideally be 99.9% definitive), we met a “top specialist” at another hospital. We went to meet Dr. Praveen Gupta at Fortis Gurgaon. And after waiting outside to see him for a good hour, we were graced to his presence in the company of three other patients he saw in parallel. And he said this. “There is not a lot we can do. I think you have myopathy and neuropathy. I will recommend some supplements.” And he prescribed vitamins! This man is supposed to be among the Gods of the subject of nerves and muscles. And after a genetic confirmation, all he did was prescribe vitamins. We ignored him. But we were lucky that he did not ask us to get more tests.

And now that we knew the disease by its name, which isn’t even a nerve disease (irony!!), we found a group online, did all our research, and went to Bombay Hospital to meet Dr. Satish V. Khadilkar. And we came across a medical professional who represented what a Doctor should be like. He spent 30 minutes with us having an educated discussion that wasn’t generic nor designed to make money off of us. And, he knew about the disease because almost everything he was saying matched with everything we had heard.

So that was our journey. So the next time you feel the urge to visit a neurologist, here is my advice.

1. Spend a little effort to find the right specialist, and even if it requires traveling, it will come off cheaper in the end.
2. Stay away from Max Hospital and Fortis Hospital, and the likes
3. Government hospitals are not much better in specific expertise. But if you have the energy and time to battle the queues and red tape; it’s a better option because at least disappointment will be cheap.
4. And; last but not least, explore the world wide web a little. There is value there.