My horror with Transverse Myelitis

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I am Mihir aged 25 years. I belong to a conservative Marwari Jain family. We live in South Bangalore and have family business. I am narrating my story to help others who might be having a similar condition and experiencing similar pain and shock due to autoimmune disease.

Mihir

It is now nearly 2020 and I have somewhat recovered from TM. I go out on the road and walk. I go out to our family shops and sit for a few hours and work. No I can never really be that body building types gymming in those Cure Fits or whatever. Nor can I run some marathon or jog. It is now fine for me. I am not interested in living for how the society would view and apprise me. If there are people who are judging me, then let them jump to the moon. What I can, I will do. I can at max walk to the nearby park and walk one round and totally all I can walk is around 15 mins. This is good enough for me who was once paralyzed and spent months bedridden. I can walk at home, do my own work and be independent. This is sufficient for me. I can’t go to restaurants or pubs like my old friends and eat without thinking. Even this is fine for me now. I have no need to be like others. Let them be normal.

Mihir

I was 21 years and had finished B.Com in 2015. I was eager to do MBA in London after work experience. I worked in an auditor’s office for 2.5 years and then I took a year to study from January 2018 and was going for GMAT classes. Suddenly in July 2018, one day after evening class I found I couldn’t move my legs. It was very heavy and numb. I was shocked. How can I go home now since I had come on a bike. My classmates got an auto for me and another boy brought my bike home. At home my parents, aunts, uncles and cousins got scared. We live in a joint family and everyone was worried. They called our family doctor home. He came and checked me and said that it could be a sudden attack of viral flu. He gave just crocin and said we will wait and watch. Meanwhile I developed lot of pain and tingling sensations in my feet soles and even poking feeling in my legs. I went to sleep under a lot of stress. To my horror in the middle of the night I found I had wet myself and had numbness from waist onwards to my feet. I could not make out when I need to use the restroom. I started crying and my family decided to take me to the emergency ward of a hospital right away. I could not even put my feet on the floor. My cousins carried me out of the house into the car.

When we went to the emergency ward of a nearby hospital, they asked many questions like did you recently get any viral infection? Did you have a recent attack of chicken pox or other bacteria? I responded that I hadn’t got any of the diseases. The emergency doctor was smart and he told my uncle and father this seems like a neurological condition, tomorrow a neurologist will examine Mihir. Everyone was crying badly. I was not even 22 and a terrible disease seems to have struck me.

Meanwhile they admitted me in a room and gave me intravenous B12. I was feeling very depressed. I couldn’t even make out when I want to go to restroom. That was so shameful for me when the male nurses brought adult diapers. What is this Karma that has hit me that I have to be in this ill-fated condition? Why have divine force deserted me like this? That too at such a young age, when I have ambitions to do big things in life and go to England to do my MBA. I was simply crying. My eldest cousin sat with me holding my hands. Other cousins were pressing my feet to make the numbness go away. Nothing was working. I was feeling no sensation waist down. The duty doctors were telling my uncle and father it is partial paralysis of waist to feet. Once we get a proper diagnosis we can do some treatment

In the morning, 2 neurologists came and examined and tested my sensations by poking etc. They were very competent and said it looks like a autoimmune disease. We will do contrast MRI of brain and spine and also a puncture in the back to test. Some blood tests were taken. I was very deeply worried about the prospect of being bedridden for the rest of my life. When will I be able to walk? What does the future hold for me? Will there be a cure? The neurologists said after we diagnose we can reverse some of the problems I was experiencing and asked me not to worry.

The next 2 days were filled with tests and painful poking. After back puncture I felt giddy and vomited. I had no appetite to eat despite all tasty dishes brought from my house. I was thinking, what is the use of living like this? I cannot walk. I need help to go to the restroom. I cannot move myself properly. Even turning to sides is tough so why must I live so badly. Zindagi jeena hai tho shaan se jeena chahiye. I always used to think I will do so many things and be an achiever. Now I was lying in a hospital bed with diapers! What a big shame for me in my life!

Many tests were done. After 2 days the neurologists came back with some reports and bad news. This is autoimmune disease. I had heard that before but knew nothing. Then they said it is something like transverse myelitis. My mother and aunt started crying loudly. What is this big disease that has hit our boy? Will he become well or stay in this condition? My cousins took the doctors outside and spoke something. I had never heard of such a disease in my life. My family does not even know what is a autoimmune disease and this myelitis is sounding so big and worse. Finally my uncles and cousins came and told me not to worry some treatment will start now itself and you can get better.

In the next few hours, both neuro doctors said Mihir you must stay brave and strong. We will be giving steroids in IV and also IgG. I had heard of steroids how it can make us fat. I wasn’t keen on taking such medicines in my life ever but this was my fate to take these. My one question was always please let me recover enough at least to walk and get out of diapers! I just want some dignity back. I hate this life of diapers where I am fully numb from waist. The doctors said surely many people have recovered a lot of functions but you also have to do physiotherapy and exercises. I was ready to stand on my head!
I was staying in the hospital for around 10 days taking IV steroids and IgG. They said IgG is from many donors who have given their antibodies. After one week in the treatment mode, one midnight I found I was able to turn a little easily. I got up and asked my cousins to put on the light. I turned both sides little easily. I also felt some sensation returning to my legs and my lower waist was not so numb. By morning, I was able to understand I need to use restroom and told the male nurse. He helped me and took off the horrible evil diapers. I was finally able to at least get some dignity back instead of feeling deeply shameful.

The last few days in hospital involved a lot of physiotherapy, bending and moving. It was painful since I had lot of pain now instead of numbness. I experienced shooting pain in the lower back, legs and feet. It felt like my body was on fire. Also the IVs made me vomit many times and I lost interest in food. I was having only liquids like juice, buttermilk and custard. I felt very depressed but always my elder cousins made me feel better and motivated me that I can be well again. I used to get many visitors especially our relatives and Marwari community friends. All came to see what is the condition of Mihir. People were sympathetic and also kind. I was so strong before now to see this was sad for them and even more sad for me. I have to live this and experience this low life. By then thanks to the grace of our Jain gurus and prayers I was finished with those dirty diapers. I cannot forget this episode in my life of not even having a basic control in my body. This will be in my bad memory till I die. I pray no one should have this kind of fate of being grown up and having this shame.

Neuro doctors came daily to see me. They told my uncle and father that the acute flare up episode seems to be in control with medications and that I was slowly regaining my normal functions. Maybe I could go home, continue with my medicines and physiotherapy. My uncle came and conveyed the happy news. I was relieved. I was told I will be given steroid prednisolone in tablets. This is a course for almost 6 months. I agreed to be taking this medicine. The day for going home was closer. My family kept asking the doctors why this has happened to Mihir? What is the real cause of this? Will such an episode repeat? Somehow doctors did not give proper explanations. They said autoimmune disease like this is unexplained. Maybe I got some viral in the past and this has happened now. Also they can’t give guarantee this extreme episode will not be repeated. I need to be careful and watch for some signs. I may not fully recover like what I was before but at least some basic movement and mobility is better than having a condition of wearing diapers in adult life.

I went home with medicines and a physiotherapy doctor came every morning to help me bend, stretch and do my exercises. I was slowly walking around the house. Pain was always there. Sometimes I took pain relief medication and sometimes I just managed. What was worrying me was my career. My MBA dreams seemed to be over. At max, I can join my family shops and manage something there. My father asked me not to worry about anything at this stage. It felt strange in a Marwari family where everyone was normal for me to be sick. All members of my family are strong and normal. No one knew much about something like autoimmune. Most were puzzled. I had to be the only bakra victim to get this type of horrible disease.

Six months had passed at home confined within four walls. At max I went and sat outside in a chair. I did not dare to go out and walk even in the compound. People would stare at my gait and the way I struggled to walk. Our domestic staff were asking questions. All were asking what had happened to you? I didn’t want to face such questions. One day one of my professor Sir from Jain college came home and spoke to me. He said these autoimmune conditions are not so rare, many have this and there are patient groups that can support. I was interested. He gave me the number of a helpline called OPFORD near Ramaiah hospital. They had a website and many other autoimmune diseases were there like MS, Lupus and NMO etc. I saw the number and mail too and decided I will call them and seek help.

I had become sad and depressed by this time of living in sickness and pain. Neuro pain is worst with not just pain but pins and needles, burning and poking. One day in the morning I thought I need help more to come out of this sorrow. I called OPFORD helpline number. I connected with a volunteer by name Shireen. She was doing biotech BSc and knew all about such diseases. We can come and talk to you at home she said. I happily invited her home. Shireen came with another girl Archita. Both were volunteers and said they were in a college and interested in rare diseases of which many are autoimmune. They helped patients with information of doctors, diagnostic labs, hospitals, free medicines and also important counselling for the mind. I felt happy that maybe I am not alone and there are others. I showed all my reports to the two girls and they took down the details. I told I am still in steroids and not happy with this medicine. I feel dull, thirsty and tired all the time with these medications. Meanwhile the girls asked if I have tried any diet. I said no see I am in a Marwari family where people consume 5 kgs ghee per month and daily milk is brought in 5-6 liters! I eat what is cooked at home. I have no understanding of diets and neither these doctors have told me anything except I must not eat much fat. Shireen said that most autoimmune diseases can be somewhat controlled through a proper diet. They explained that mostly autoimmune is an inflammation somewhere and foods we eat can make it more inflammatory. I was shocked. Why the doctors hadn’t informed me of these things? I requested Shireen and Archita to talk to the experts and inform me so that I could adopt and follow a diet.

I felt a lot better with hope from Shireen and Archita. They knew about such diseases and seen other patients. I was hopeful. Both of them told me nothing was wrong to be sick or disabled. It is only in our mind and also how our society reacts. We must not give in to societal pressures and we must do our best to try and recover. They said I must become more active despite the pain and start walking outside in the compound and on the road. I was restricting myself to be within the confines of my house and not going out but after repeated discussions with them I said I will try.

After about one month of counselling I was feeling much better. I went out in the compound and walked though it was tiring and painful. Funnily nobody stared or asked questions. Strangely at night after the walk I was ok. I thought I brought this nonsense on my head by not being active. I shall go out on the road and try to walk.

The next day I called OPFORD helpline number again eager to tell them that I will walk on the road. This time Dr. Namitha picked the call. I wasn’t sure of how to talk to seniors. She knew all about my case and firmly said Mihir you have to get on a suitable autoimmune diet and pick up exercise and walking again. The more you give in to your body’s demand for inactivity, it will lose muscle strength and stamina. I was agreeing to every word. I knew she knew what she was saying. She suggested reading some books on autoimmune disease and seeing some websites on alternatives, diet. I came to know about Facebook groups and other supports for people like me. Dr. Namitha said she will send some books with Shireen and Archita. I felt something good will happen now.

I got some books and also read the websites. I joined the FB groups and started following some functional medicine experts on Twitter. I saw many YouTube videos on diets etc. I was angry because if I knew all this I could have done many of these long ago. I wasted time by not reading about my disease or seeking help. I firmly resolved and said ok these are tough diets but I will stop GLUTEN, DAIRY and SUGAR! Very very hard for a Marwari boy with a body brought up on all three bad food items. Shireen and Archita laughed when I said I woke up to milk and sugar, wheat puri for breakfast, parathas for lunch, ghee roti and what not. All overdosed with wheat, dairy and lots of sugar. I had unknowingly almost ruined my body. I read a lot about how these food items add to autoimmune inflammation conditions. Strange but why no doctor had told this to me before? No neurologist, not even that autoimmune specialist I was seeing in another big hospital. All they gave me were increasing doses of steroids. If some improvement could be made through a diet, then why not? And I can surely do more physical activity. Who cares if people on the road see my shuffling struggling walking and ask questions!

I told my family I will be on a diet and not to stop me. They were shocked because this was most of the things we eat and most of the things I love. It is so hard for me to resist that aloo puri or milk cake. I try to remember the diaper and stay away from such stuff! I started seeing which foods will suit me. I drank black tea, green tea, ate lots of boiled vegetables, millet, coconut oil, olive oil. I learned to go into the kitchen and see for myself what is good and bad. I even read up some recipes and made simple stuff like hummus with boiled chickpeas and olive oil.

After around 3-4 months of this kind of diet, I was feeling surely better inside my body. The neuropathic pains are more manageable. I no longer get such acute numbness attacks and the lower back shooting pain is gone. I posted in all my groups in FB autoimmune patient groups. I was still in touch with OPFORD helpline. After 6 months I repeated some blood tests and I was so amazed and surprised that my ESR and CRP levels have come down. This are the tests for inflammation and surely it was in control now with some simple dietary changes. This was really true and real and helped me immensely. If I can be helped other patients with autoimmune disease can be helped too with some diets. In some FB group I read, food should be medicine. This was 1000% true!

It is now nearly 2020 and I have somewhat recovered from TM. I go out on the road and walk. I go out to our family shops and sit for a few hours and work. No I can never really be that body building types gymming in those Cure Fits or whatever. Nor can I run some marathon or jog. It is now fine for me. I am not interested in living for how the society would view and apprise me. If there are people who are judging me, then let them jump to the moon. What I can, I will do. I can at max walk to the nearby park and walk one round and totally all I can walk is around 15 mins. This is good enough for me who was once paralyzed and spent months bedridden. I can walk at home, do my own work and be independent. This is sufficient for me. I can’t go to restaurants or pubs like my old friends and eat without thinking. Even this is fine for me now. I have no need to be like others. Let them be normal. I am fine with living with some limits. It is ok for me. I am happy in this state especially when compared with what I was before. My current best friends are Shireen and Archita from OPFORD and they are best understanding of my condition and situation. This is enough for me. Two good friends who accept my body state is better than 100 friends who don’t even care about my disease.
I just want to tell friends who might read this and also those who may have autoimmune conditions. Don’t be like me when I came from hospital when I was just in a well. Internet is there. Read about your condition. Search for patient groups. See alternative treatment and good diets. Follow other patients on social media. Don’t feel inferior and do ask for help. It is fine to ask for help, it is not a sign of weakness. Don’t be afraid of society. Let them learn to accept that disability is a part of the human condition. Live boldly and without fear.
(Mihir is a pseudonym taken on by the writer himself. Name changed to protect his identity.