My struggle with CIDP- an autoimmune disorder

(You can also visit my webpage www.ramgvallath.com)

I was thirty three and on top of the world when the niggling worry started. It was quite a small worry in the beginning. I found that my hand would tremble when I was holding up a spoon, a plate, a glass of beer etc. My original self-diagnosis was that this was caused by work related stress. When one becomes a country manager at 31, apart from being on top of the world, the by-product is stress. And when at 33, I had moved into a telecom operation as head of sales and marketing, the effect was approximately like moving from the frying pan into the fire.

But stress did not explain the loss of balance I used to face while climbing down stairs, which was a second symptom that had started developing.

But being very busy climbing the corporate ladder (I became one of the youngest COOs in a telecom operation in couple of years), I ignored the symptoms. Finally, when I did meet a doctor, he examined me and said I was perfectly all right.

In the next two years, the condition quickly worsened. My fingers started losing their strength and it also became difficult for me to climb up stairs. The COO of a state telecom operation was a reasonably high profile position. I would be invited for events etc. and would feel a cold clammy feeling at the pit of my stomach if this involved climbing up on to a stage. I would be petrified of falling and would pray to god every step of the way. (Imagine being the chief guest at the Cochin Naval Ball and spending the whole time worrying about how I would climb up the stage instead of admiring the beauties I was judging.)  I also found it difficult to do anything which required fine motor coordination, like putting on buttons. I had to stop driving, an activity which I loved.

Over the next 4 years, the condition steadily worsened and I had to move roles so that I could still manage to deliver on my job. In the meanwhile, I had couple of more wrong diagnoses from doctors and was told that the condition was genetic and without any treatment.

It was then that my uncle Dr. Balakrishnan, a renowned doctor, helped me set up an appointment with the HOD of neurology at Amrita Institute in Cochin. Dr. Ananthakumar examined me and indicated that the condition was not congenital but was an acquired disorder called CIDP. To be 100% sure, he did a nerve biopsy. While waiting for the biopsy result, one day I contracted a viral fever. This triggered an acute case of the condition and I was laid up for about nine days. I could not lift my hands, sit up or even talk. Luckily, an angel by the name of Dr. Monica Thomas, whom I had never met before and who was referred to us by Dr. Ananthakumar, took the trouble to come all the way to my house after a full day’s work. She took one look at me and confirmed the condition as CIDP. She got me admitted in a hospital.

CIDP is an autoimmune disorder- Chronic Inflammatory Demyelinating Polyneuropathy. My own immune system was attacking my peripheral nerves and they were losing their conductivity. This in turn was making my muscles useless and over a period of time, they were fading away. For the first time in seven years there was a tangible condition that I could fight. The standard treatment for the condition was to take an intravenous medication called IVIG. A full course was 2mg/Kg of weight which in my case worked out to 160mg. This had to be taken over five days. It cost 6 lacs!! An enormous sum. But at the end of the five days, I was way better and over the next week, my body became almost completely fine. I was better than I had ever been for the previous five years. I was on top of the world. I ran up ten flights of stairs in my office, cooked pizzas for my kids and buttoned up all the shirts I wanted! But in 45 days, the condition went crashing down again. The effect of the magic potion had worn off.  The doctor had not warned me of this. For me, who thought the whole issue was behind me, this came as the rudest shock. I met the doctor again. He suggested I start on steroids. Steroids would suppress my immunity, and this would lead to an improvement in the condition. He also recommended another dose of IVIG. This time I took a fifth of the first dose, since we couldn’t afford to spend on a complete dosage.

Over the next 3 years, I took IVIG once every two months. The effect kept waning and I had to take it even more frequently. The dosage of steroids had to keep increasing from 30mg per day to 40, 50, 60 and finally 80. I bloated up like a balloon and put on about 14 kilos. My eyesight started fading (an effect of the steroid and I finally had to undergo a cataract operation). In spite of all the medication, the condition steadily worsened.

Before the condition, I had always walked with a spring in my steps. Now I could barely lift my legs. I couldn’t lift any weight. My wrist started flopping – it couldn’t even lift the weight of my hands. My left foot started dropping – the ankle muscle stopped responding. I had to lift the leg up high and place it forward to avoid tripping over a flopping foot. It became impossible to button up my shirts. When travelling, I had to wake up at 5.30 am for an 8 am meeting, since it would take me 90 minutes to put on five buttons. Finally I had to stitch special shirts with concealed press buttons with dummy buttons stitched on outside. The worst was when I had to go to the urinal. It would take time to find the zip with my nerveless fingers. And often, after the job was done, it would take as high as ten to fifteen minutes to zip back up.

Through all this, there were a few important rules I created for myself.

•  Never ever think of what could have been.
•   Always be cheerful and be the provider of cheer – at home, at work...
• Actively seek solution instead of moaning about the problem.
• At work, always do more than what is expected of you.
• Thank god every day for a wonderful family, great friends, relatives and above all, for my unconquerable spirit.

I would keep pushing myself to walk, exercise, do yoga etc., while continuously searching for solutions on the web.

Finally on one of my internet researches, I came across a clinical trial that was going on at Northwestern Memorial Hospital in Chicago. I reached out to them and the nurse got back immediately with all the details of the program. We also heard from her that the doctor, Dr. Richard Burt, the head of the Division of Immunotherapy & Autoimmune Diseases (DIAD) at Northwestern was slated to come to India for a talk. (http://www.stemcell-immunotherapy.com/index.html)

We attended the talk and he was kind enough to have dinner with us. He was as humble and down to earth as his achievements were lofty and life changing.

Over the years, he had treated many of the autoimmune disorders for which there were no real cures. These included Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis and Scleroderma. He had given life back to many patients without any hope. Jayu (my wife) and I discussed and decided it was worth going for this. The procedure was ‘Autologous Nonmyeloablative Hematopoietic Stem Cell Transplant’. A mouthful, I agree! But what it meant was usage of one’s own blood cell producing Stem Cells to regenerate one’s blood cells. The term non-myeloablative meant the dosage of chemo was not very aggressive.

The whole evaluation and treatment had to be in Chicago, spread out over 10 weeks.

For Jayu and I, the trip was in a way a nice holiday too. We enjoyed the stay at Chicago, right in the middle of the Magnificent Mile. Even though there was so much uncertainty, it was also a time of intense hope. The fact that my classmate couple, Manish and Radhika and another classmate Sridhar and his wife Vasudha made every effort to make us completely comfortable in Chicago helped hugely. Skype to our parents and children and family also kept us connected to loved ones and their best wishes and prayers.

The first 2-3 weeks was for evaluation- to make absolutely sure that the condition was CIDP. This was followed by mobilization – where a dose of chemo was injected into the body to stimulate production of Stem Cells. About ten days later, sufficient quantity of Stem Cells were then harvested and kept aside. Then four weeks later, the actual treatment started. This included injecting chemo and certain other substances into the body to completely knock out the entre immune system. After this, the Stem Cells were re-injected into the body and within about ten days, I was discharged.

The staff at Northwestern was amazing. The nurses were the most professional I had ever seen in my life. Even in the hospital, the doctor was considered to be a miracle worker. But more than anything, he was a wonderful person: sensitive, empathetic and extremely knowledgeable.

By the last four days in the hospital, I could start feeling my body responding. My will, which was long shackled inside an unresponsive body, exulted. I embarked on a rigorous exercise routine.

Back home, over the next year, I set myself a blistering target to recover my lost muscles. I created a target sheet with daily increasing targets for the next six months for 28 different muscle work outs. Then, every day I pushed myself to do better than the target.

The fact I was writing my first book – Oops the Mighty Gurgle gave me a huge mental push. The book was so wacky, funny and totally in the realm of the absurd that writing it kept my spirits soaring high. I jokingly tell my friends that it was a mix of the chemo and the rat and rabbit extracts that were pumped into me that made me write such a crazy wacky nutty novel. 

                                                 www.oopsthegurgle.com

I have been trying ever since to get some of the major hospitals in India interested in the treatment and collaboration with Dr. Burt so that many more persons could have access to this life changing treatment. I have run up against walls, but will not stop trying. In the meanwhile, I would like to spread awareness about this treatment to as many people as possible. If they can afford the treatment (it is expensive), they should consider this seriously.

Today, I have almost completely regained most of my motor abilities. I can button up my shirts, drive a car, lift weights, travel alone, climb up steps without holding on to railings and can lead a pretty much normal life. I still can’t run or type very fast. My handwriting still sucks. But I am, to use a slang, rocking. I am on my second book, am consulting in the education domain and give motivational talks based on my life’s experiences.

I continue to thank god for my wonderful wife, my lovely kids, my relatives, my friends, and my never say die spirit. But most of all, I thank god for Dr.Richard Burt and the wonderful work that he is doing, saving hundreds of lives every year.

I can be contacted on my email ID rvallath@yahoo.com and will be delighted to extend whatever help I can to anyone who is suffering from any autoimmune disorder. 

                     The following is an update from 15th July 2015

I have been incredibly lucky that I have managed to transform my life and reinvent myself. Today, my second book, 'From Ouch to Oops' has become a bestseller. Over the last three years, I have addressed more than 10,000 school students, about 1000 college students and about 20,000 corporate employees; my message- every downturn can be converted into a stepping stone for success. 

The book is available on http://amzn.to/1J6Kpqi. 

I have attached a small video about the book.

Even though my condition has marginally relapsed, I have been able to keep it under control using Cellcept. I continue to fill every moment of my life with positive things to do- my writing, my talks, my science learning, my editorial work for a science magazine, the strat up I work in etc. This keeps me charged up and ensures that I never ever feel negative or look at what could have been. 

(You can also visit my webpage www.ramgvallath.com)