Apologies for not updating sooner, but I had a laptop situation which I will explain in a bit. But here is the health update – since that is the purpose of this blog page.

A couple weeks back, I sent this email to Dr. Burt in Chicago (He is the doctor heading the clinical trial I am a part of)

Smitha: My neurologist wants to give me a dose of iv steroids this week. This is because I’ve been feeling very very weak the past two months. I can no longer walk on my own. Will this be OK?

In response Dr. Burt calls me on the phone and he basically indicated that I might have failed HSCT. His words “this was mostly a hail Mary since you also failed lemtrada”. He asked me to meet with my hematologist and get three monthly doses of Ivig. But I’m still keeping hope that I’ll get better, because what other choice do I have.

In any case, I got my first dose of IVIG this week. I have low platelets again, so basically I am again living in slow motion, trying not to bump into walls, chairs, dogs..all those.

In other news, I am back to doing Yoga. Yup. Yoga was something I had given up hope of ever being able to do considering the fact that my balance is non-existent. But I was

Wrong

Yes. My cousin recommended this wonderful studio where the teachers are so kind that everything is modified for me, and I feel excellent by the end of it. I still have to sit a good 40 minutes in the lobby after class to be sure I can walk out of the studio. But that feeling of being ultra fatigued from workout is totally worth it.

Little victories 🙂

But, technology has decided to not play nice with me. My laptop turned on – all by itself <I insist> – and got over heated. And now it refuses to turn on again. Suicide.

My phone’s touchscreen seems to have MS too. It has decided to not recognize touch over this patch. And it just so happens that that patch happens to overlap the “Skip Ad” notice on YouTube videos. It takes a lot of calm breathing to not throw my phone out my second story window. Good thing I am doing Yoga.

I am currently on disability leave 😦 Yes I couldn’t really go in to work with how I am feeling. Getting tired just working the sedentary job. I am thankful I had the option of disability leave to maybe recover a bit more. Has MS affected my career? you could say that.

But like always, I have plans.

I am working out with this program I had mentioned earlier called ‘ the MS gym’. It has been difficult mostly, but hey I have to stick to my plans. At this point I think this blog page might become a list of all of my plans and ideas to fight MS. HSCT being the biggest hammer till date. Actually, to be honest, I took another medicine for two years (called Lemtrada) which I then believed to be the big hammer. *sulk*

Back to the workout plan. There is one specific program called ‘Knee-Kiss’. Do not worry, this is completely PG-13. No real kissing involved either. But this refers to a style of walking where each step is trying to prevent you from falling over since the previous step went sort of criss-cross instead of straight. Then there is another program trying to correct my ‘circumduction gait’. One where my leg takes a nice big circle before landing in front with a nice heavy foot-slap. I sound like this swish-slap-swish-slap-swish-slap, you get the idea. I think I should totally rap to my own stride.

Another thing I am trying is of course yoga. But with my lack of balance and strength the only thing I am able to do well is this:

Viparita Karani/ Legs up the wall pose (so much fun when you have a little helper)

It is not enough to just workout apparently. I need to follow some Utopian diet. Well I am vegan for 2 years now. Vegetarian till that point since birth. At an optimal weight. Now, what can I eat differently that will help? Well the answer is simple – Do not eat 😐

The latest recommendation I was given was to try the Fasting Mimicking Diet – FMD in short. But that is not right now. I will do it and will record my findings here for anyone else in my boat. But for now, I am heading to the kitchen.

As of yesterday my stem cells are 3 months old. But how am I feeling? About the same as I was back on the day before I started treatment 😦

My goals:

My reality:

I need time to stand still (don’t we all?) so I can get better and then come back and live a fabulous life. At least one that doesn’t have me hiding at home scared of sunlight like I was Dracula.

My *lunch crunch* is at its worse. To an extent that I am finding it hard to type after a meal. I have read in multiple forums that most people suffer fatigue after lunch and its not about the contents of lunch but it is more about the quantity of lunch. Well starting tomorrow I will eat for 2 hours, lets see if spreading out my meal helps with the fatigue. Because reducing what I eat is not really an option since I already eat less <per mom>.

I have read that the recovery after HSCT is like being on a roller-coaster. My roller-coaster is stuck in some pit. I can’t wait for it to get back on the rails.

I have decided to quit my engineering job and become a food blogger.

Okay…not really. But you’ll see that I tried and I have no future in it.

One of the **features** of my MS is that writing is hard. Very hard. But I keep trying to write everyday. My fingers just do not want to move the way I think. There is such a big disconnect between my brain and my hand. See, that is a perfectly good excuse for my typos, but I’d be lying if I said that I was any better before MS.

Here is what I wrote today:

My writing is still not very clear and gets shabbier as I progress. But, I’ve got to keep trying.

By the way it is a completely legit recipe. But by no means an original one. I have no future in this field though. I know this because my mom pointed out that I have used 3+ languages up there. I heard the whole spiel about “Know your audience…blah blah” 🙂

I am 2 months, 2 weeks old ( if you are counting).

So here is a little video of me doing the “walk” – a self imposed milestone of improvement.

It looks like I am walking really well, but then heel-to-toe walk proves to be my kryptonite 😦

Here is a little bit of weaving practice for when that life skill will be required (you know, the next time I get pulled over for a DUI test)

By the way I now have a healthy fuzz on my head. No longer shiny bald.

 

This post is for the benefit of people that might have the same issues but might not know what it is (Just like I didn’t know what it was back then)

Disclaimer: Every MS patient’s symptoms appear differently. Every MS patient continues to have different symptoms during the lifetime of the disease. Every MS patient is hence a snowflake.

Disclaimer to disclaimer: Every snowflake *might* have a common branch and so here is my diagnosis story

There were symptoms that I did not think were related to MS back then, but like we all know, hindsight is 20/20 and so now I know better.

Back in the summer of 2009, I started noticing my symptoms. It started with the inability to empty my bladder. Yes, the not-so-glamorous-to-discuss symptom. And I didn’t obviously know why. And I did nothing about it. Eventually I noticed a weakness in my left arm. I am bad at typing. But the number of typos I made then was so many that this weakness was noticeable. I assumed my heart was the culprit, because, you know, LEFT arm. But an ECG proved that my heart was pumping just fine. Around this time, my right foot started to refuse to cooperate. And so began kicking off flip-flops, random numbness in my right foot and phantom drops of water on my face. I was a busy student and didn’t have time for this.

Dr. Google to the rescue. I asked my university doctor to refer me to a neurologist. And one MRI later, my very “obvious” case of MS was diagnosed. I had never heard of Multiple Sclerosis before my google sponsored education. I am forever thankful to the internet for this. But I am listing all my symptoms here for education of people like me who had not heard of MS. It is very easy to ignore these symptoms as simple annoyances till it is too late.

• Inability to empty bladder
• Weakness in any limb. Usually on one side. Hey this could also be a stroke – so act on it QUICK. But this could also mean that you slept on your arm and it fell asleep. So make a smart decision. You know your body the best
• Phantom drops of water
• Harder to lift one foot compared to the other (read about foot drop)
  • This can lead to Circumduction gait
• Lack of Balance  – usually manifests as inability to walk in a straight line. I’d fail a DUI test every d*** time, but thankfully I have no real proof of this. Just take my word for it, okay?
• FATIGUE. Oh this has been my most intense symptom thus far. I get tired to a  point where the only option remaining to move forward would be to crawl. I’m not trying to sound dramatic, it is the truth.
• Heat intolerance. I cannot handle a hot shower or a walk in the summer for more than 50 yards.
• The lunch crunch. Okay I made up that name. So you probably will not get any google results on that. I get ultra tired after lunch and find walking real hard after lunch. This does not happen at breakfast/dinner, hence the name. Maybe I eat too much at lunch, or maybe my body expels a lot of energy burning the food, I am not sure. But I cannot walk after lunch for a while.
• I have trouble swallowing when I get very tired, but this goes away with some rest
• Same trouble with speech. I still have to focus hard when I say words with an ‘r’ in it. My husband asks  me to say “microwave” often as a test of how tired I am 🙂
• I have trouble writing legibly. Form filling is a nightmare.

This is the list I can think of right away and I will update this post if I remember more. Please know that there are more symptoms that have been reported and researched, but listed above are mine.. Here is a bigger list:

https://www.nationalmssociety.org/Symptoms-Diagnosis

 

Today I got an acknowledgement from “Locks of Love”. Like everyone who ever donated to Locks of Love or a similar organisation, I also hope that my hair can be made into a fabulous wig for a child to use. It is, I think, only fair that I get to show off my certificate 🙂 I love how it says “Awarded to”. I feel like I accomplished something.

 

On another note, I saw this video of Selma Blair talking about her MS diagnosis. Poor lady is going through a relapse in this video, but her spirit is so commendable.

https://www.goodmorningamerica.com/gma/story/selma-blair-opens-tears-relief-ms-diagnosis-61310469?fbclid=IwAR033RMqRJx3ACY1BmYHP7l6fxfEnUj7FxWuRA0QnKuto1QSvMFIG6k_hX4

While I was happy that she has such a good attitude about her condition, I couldn’t help but be envious of how she walks on 6″ heels and all this while rocking a cane!

That is the distance I just drove my car.

And that is probably what I looked like 🙂

I did take a while to waddle to the car, and then I just sat in the driver’s seat waiting to be able to drive. But I did it. My poor dad volunteered to be my passenger (actually he was “asked” to volunteer by mom). I am thankful that he did come not knowing if my legs would work, considering that it is a no-brainer requirement for driving my car.

I am here to report my progress over the past few weeks or rather the complete lack of it. I am continuing with working out every day. I have managed to walk the 20 steps to the mailbox once. That felt like a huge prize worthy moment even though I was hanging on to my husband the entire walk.

But at the end of it all I am still tired.

Recovery, I have realized is more to do with patience than physical well-being.

I actually started to type out this blog post 10 days back as a celebration of my one month old immune system. But I realized I had nothing to type even before I started, hence the rant in paragraph 1.

The newest development in my life is that I have started to work full time again. I cannot yet walk the distance from the parking lot to my cubicle, so I will be working from home for a couple months. I am so thankful for such understanding co-workers and management. This is something I realize I am very lucky to have – The support at my workplace.

I always thought that somehow luck always eluded me, but quite the contrary. Here’s why…

• I came to live in the USA back in 2008. I thought I was alone in a new country, but not true. I always had the support of my cousin that lived in the same city. Not everyone has family nearby when they move to a different country.
• I lived on a Teaching assistant’s salary of $600 for the first 6 months. Of this $300 went towards the rent of a furniture-less home shared with 3 others. The other $300 was split as $200 for living and $100 savings (Yes, I saved 🙂 ) In retrospect I cannot imagine how I managed life back then. But I now know that there are people who do not even have that promise of $600 a month.
• The next 6 months saw a phenomenal rise in income. $1800/month. That’s right! But in true middle class Indian fashion, I just sent every remaining dollar into the hole called College Loan. And the loan was paid off in full even before I started work full time!
• This was followed by a 1 year internship! I thought life was made. But here is where the Multiple sclerosis hit.  2009 – 2010 were tough years. I had to learn to walk again. Because surprise surprise, your brain happens to forget. Oh and I didn’t really tell my parents back in India that I was diagnosed with MS. There was no point in letting them live in worry about their daughter living across the planet. But like I said, I am lucky. They have been nothing other than supportive since they found out a year later.
• Did I mention my husband? 🙂 He has been my rock through all this. I  read about so many couples that split owing to the stresses of living with a chronic illness. I am one of the lucky people that never had to think along those lines.
• My one gripe was that I did not know about HSCT sooner, but in the end I am glad I had that opportunity. Let’s face it, it is very expensive to fall sick in America. After all my ultra expensive medicines came HSCT that took the prize on being the highest priced. But here again I feel so lucky in that my friends, family and so many strangers around the world rallied for me and helped me raise the funds I needed to pay the hospital up front. All this in 3.5 days. I couldn’t believe it. Plus I got treated under Dr. Burt. Now that is like learning how to play basketball from LeBron J 🙂

Writing this blog has given me even more clarity on how I need to be patient and give my mind and body a chance to recover. But I am still hoping that this darn symptom  of ‘Heat intolerance’ will disappear before the Texan summer.

I was part of a clinical trial. So what exactly was this trial about?

I am adding this post because lately I am getting asked a lot about why I am not better already 🙂

For one, it is too early to say how the treatment has or has not benefited me. So comes the next most common question. ‘How long before you know?’

It’s not yet an exact science. The keyword being – ‘yet’. I was only a part of a clinical trial (linked below). I’ve heard a very wide range of recovery times (1-2 years), and people aren’t really back to normal at the end of it. A lot of the damage is permanent unfortunately, but the hope is to not get worse. All that the trial aims to do is to arrest the progression of the disease. Any reversal of previous symptoms is then considered bonus.

This is the trial I signed up for:

https://clinicaltrials.gov/ct2/show/NCT03342638?term=burt&cond=Multiple+Sclerosis&cntry=US&rank=2

So the answer simply is that ‘no I am not better yet – BUT I will be’ 🙂