My Lazarus Journey (Treatment Phase) post NMDAR Diagnosis, Kota, Rajastan
I am writing this article for 2 main reasons.
- For all the ones out there who are diagnosed with NMDAR Encephalitis but don’t know much about the treatment process.
- From my experience 5th June,2015, pardon my exaggeration, but somehow I feel, no matter how much we ‘think’ we know about this complicated disease, or for that case, its treatment, the less we actually do.
Also, I am personally talking about my experience, it differs from person to person and like the disease it’s intricate. It’s post diagnosis, the treatment phase. It took my parent’s a lot of hard work and googling to find out what NMDA Receptor Encephalitis is! And to refute the people who thought I was possessed. Even the neurologist in Kota, Rajasthan was self-assured that treatment he was giving me was the right one! Besides in my case, the treatment was IVIG (Intravenous Immunoglobulin) and Intravenous Rituximab, for some it’s just IVIG for others, it’s chemotherapy, ergo, It’s an account of the personal experience of a patient without a tumour.
30th Aug 2013:- My first Grand Mal Seizure. I prefer not to go into details as to how bad it was because honestly I have no clue about it and my grandparents won’t reveal the horrendous incident. All I can say is, after watching The Exorcism of Emily Rose yesterday, I think it’s better to let somethings kept under wraps! I just know from my report that I had severe tongue bite marks the next day and the seizure lasted for 3-4 minutes. Also because I am focusing on the treatment, the diagnosis part is encapsulated.
1st Sep 2013:– I was immediately transferred to Columbia Asia hospital, Calcutta, where the doctors were baffled because all of my test reports came back normal. MRI, EEG, Blood Test Lumbar Puncture.
14th Sep, 2013:- I was admitted in Hinduja Hospital, Mumbai as a consequence of worsening of symptoms, my parents were perplexed and desperate for an explanation, any elucidation, to justify my medical condition which was worsening as the days passed on until I was finally in the state of akinetic mutism (It’s a state where the patient is unable to control his/her muscles along with the ability to speak). My parents started to quail, and finally decided to bring me back to Sudha Hospital, Kota, Rajasthan (My hometown).
29th Sep, 2013:– While I was getting discharged from the hospital (Hinduja, Mumbai), the staff took a few more blood samples and sent them for testing of NMDA Receptor Encephalitis. And at last, the moment my parents were waiting for had finally come, my CSF study showed Strong Positivity for NMDAR antibody and thus diagnosis of NMDAR encephalitis was made. My parents thought their suffering finally ended as the disease has been diagnosed. CT scan of chest and abdomen was normal. But the diagnosis was not the only thing essential in the battle against fateful disease. The reason why I am omitting the diagnosis phase in my article is, perhaps, that I want to focus on the importance of proper treatment.
30th Sep, 2013:– Consequently, I was given IVIG (Intravenous Immunoglobulin) in Kota for 5 days. After which I was capable of walking with minimal support, talk and eat all by myself. My parents thought their daughter’s health was on the road to recovery. I was even able to play football in the park behind our house. They were beginning to see light at the end of the dark tunnel but it only lasted for 35 days. What followed was their worst nightmare.
15th Nov, 2013:– I started developing abnormal sweating, and later multiple episodes of Grand Mal Tonic Clonic Seizures with a frequency of 3 -4 times a day. And I ended up in the same hospital (Sudha hospital) under the same neurologist my mother used to get Goosebumps every time he came for his routine check up owing to his constant demotivational words about the complication of my case and how impracticable it’s for patients like me to recover, let alone, be back to my normal state. The words no mother would ever want to hear, even if they were true!
20th Nov, 2013:- My second relapse lead to my 2nd course of IVIG (Intravenous Immunoglobulin) followed for another 5 days. There was little improvement this time. A catheter had to be inserted into my jugular vein for drugs, as I was unable to swallow by myself, a G-Tube that went straight into my stomach through my nose. I was apathetic, I used to chew the medicines that were bitter, responded with gestures and my seizures refused to go away. In simple words I was more or less a zombie, the only difference being that the latter wasn’t bed ridden.
1st Dec, 2013:-The neurologist in Sudha Hospital, Kota gave up on me his final words were,’ I haven’t seen a case like this and there isn’t any ‘possible’ treatment for Vaishali!’ I don’t remember a thing but my mom told me that when I heard him say that I cried and so did my mother. Therefore, hapless, my father googled on his own and found the Amrita Insitute of medical Science.
7th Dec, 2013:– I was admitted in Amrita Institute of Medical Science, my condition that time was wretched, with 90 % infection in lungs, blood infection, urine infection, I was almost dead, immobile, impassive. It was a Lazarus journey for me from Cochin and that couldn’t have been possible had Dr. Sudheeran Kannoth not taken up my case. The only neurologist who never gave up on me, his positive attitude was probably the main driving source, my mother later told me, No matter how worse my condition was, he would always say, ‘ She will be all right , Lalaji (addressing my father) just have faith and patience!’ And those words worked like a charm! But sometime words aren’t just enough. My body temperature was more often than not above 100 degrees, my parents assiduously applied ice packs on my body which reduced the temperature for a minute period of half an hour but to no avail. Nevertheless, my parents didn’t lose hope nor did Dr. Sudheeran. There was a treatment, Rituximab, but its application in a condition of sepsis could have drastic aftermath. Dr. Sudheeran refused to go forward with the treatment until and unless my body was entirely rid of the infection.
25th Dec, 2013: – 30 Lakhs INR spent on imported antibiotics from Dubai with no trace of improvement. Dr. Sudheeran was bewildered as he had used all possible antibiotics and all of them were ineffective. He called in the Infection team for surveillance. After much discussion, they decided to use a Sulphur medicine which was banned and thus, needed my parents’ permission for its application. They agreed without much ado. My mother now tells me,’ you were already dying, either way we’d be facing the worse that could happen. But ironically the banned sulphur pill that costs merely 25 INR worked impeccably where the imported antibiotics failed. My body temperature was brought back to normal in 3-4 days and finally the Rituximab Treatment was given a green signal.
22nd Jan, 2014:- I was discharged after 2 doses of intravenous Rituximab with protocol monitoring of CBC, RFT and LFT. I came to Alwar, Rajasthan where I was given the rest 2 doses of Intravenous Rituximab with a delay of a week or so because my CBC, RFT and LFT counts were not up to the mark and giving IV Rituximab in such a condition is not permissible. Now there’s something I would want to add here, Rituximab is not just any normal dose, it’s a drug that has drastic side-effects if not given under proper administration. In my case the last IV Rituximab, in the end the Doctor in charge increased the drops (meant to be 24 drops per minute) because I wasn’t cooperating and kept moving my hand and there wasn’t much left, but in 5 minutes I developed rashes all over my body! It’s a very aggressive drug, although it shows its effect at least after 4 months of its application. So people with Rituximab have to be patient.
23rd April, 2014: – I had my first Seizure in IIT KGP. I had a foot rest and for that I had to undergo a surgery. But I am not mentioning it here, because this is just about the treatment for NMDAR. One or two seizures could be understood and it was okay given that my serum came back positive from AIMS, Cochin when sent on 30th August.
29th Sep, 2014:– I sent my blood serum to Cochin again. By that time I have had around 5-6 seizures, two of them were Occipital Seizures. In which a person sees bright light and then everything goes pitch dark. I remember seeing the light it hurts a lot. My serum tested negative! Finally I was allowed for my ankle surgery and go back to my College. I was ecstatic or maybe that would be an understatement to the state I was in!
1st Jan, 2015:- My day in college. My mother had to stay with me because I needed assistance and also because she’d refuse to leave me by myself. Days passed as I tried hard to keep pace with the students of my batch, who were technically my juniors (as I had a backlog of 1 year). There were times when I used to break down because the tasks that used to come naturally were now seemingly herculean to me. I used to cry because I wasn’t allowed to swim, my favourite sport! I used to cry because even though I tried as hard as I could I failed to remember stuff my new batch-mates easily did! I cried because I was weak inside, physically, mentally and emotionally!
1st May, 2015:– I passed one semester somehow, without any seizure, I was happy to have done so. I came back to Kota, Rajasthan (my hometown).
5th May, 2015:– Afternoon, I was sleeping tired from all day’s work. My mom came to wake me up and found that my bed was wet. I didn’t remember a thing hence my mom concluded that it must’ve been a seizure. This time we were prepared, we knew where to go and the treatment was the same even if the tests came back positive. This time though instead of sending a sample of my blood, my parents preferred to take me to Cochin.
12th May, 2015:– My blood serum tested negative. But for Dr. Sudheeran’s and my parents’ satisfaction they decided to do a lumbar puncture. I have had three done before but I don’t remember any of the three. This one would’ve been my first (Because this one I’d remember). As expected the test was excruciating but the aftermath was even worse as some patients endure a severe headache after the test till 4-5 days. And I had to board a flight back to Kota. On the same day I had another seizure with same semiology. Test result came back and it was positive. We were all relaxed because there was an explanation to my recurrence of seizures. There was a treatment possible!
14th May, 2015:– I had gained weight. I was 35 kg when I was admitted in Cochin on 25th Dec, 2013. On my second admission I was 58 Kg. Therefore, I was treated with Ritoximab according to my body surface area i.e. 625 mg in 500 ml of NS (Normal Saline Water). However, the nurses were negligent, maybe they didn’t know what drug Rituximab was, they increased the drops to 24-26 per minute that resulted in rashes all over my face. My mother noticed the rashes on my face, and the infusion was stopped, managed accordingly and later restarted at a slower rate following which I had no allergies.
5th June, 2015:– My last dose of IV Rituximab. This one I was different and that made me realize no matter how much we ‘think’ we know about the treatment the less we actually do. For instance, I had no idea that cough could be a sign of the side effect of Rituximab!? And I was also under the false impression that only the increase in the rate of drops per minute could trigger a side effect. Apparently anything could trigger the allergy all we can do is stop the infection, inject an AVIL, and restart the infusion once the allergies are gone. Not until all the signs of allergies (rashes, mostly), because it can cause serious side effects! Currently, I have had my last infusion of IV Ritoximab and started yoga and speech therapy again because ostensibly, seizures also decrease our inhaling power and thus the speech therapy! I am still on medication but I hope to be back to IIT KGP and aim to be a Chemical Engineer one day! Also get rid of all the pills.
In the end all I’d like to say is the NMDA Receptor Encephalitis is a complicated disease like its name! And for that reason, it requires a lot of endurance and not only the diagnosis but even the treatment process may take a lot of time. But what one needs to do is never lose the confidence in you and believe in yourself. This too shall pass. Maybe not immediately, but definitely!