When it walks like a duck

You really gotta have a sense of humour when it comes to putting your life in doctors’ hands. Let me back up a few months just so you can all enjoy the laughter with me.

Back in September we called an ambulance because I was unable to move my legs. The days leading up to it I knew my (lets go with) neuropathy was being triggered so when we got home from the cottage and I couldn’t move, I suspected this was a flair. Long story short the Emerg doctor was confident that we needed to do both a head CT and an MRI. However, after so many hours the emerg doc has to let the floor (the department) take over and in my case, Neuro took over. The “senior” resident was sure to ask me all of my symptoms and when I assured him I was able to understand medical jargon because I have a masters in neuroscience he proceeded to explain what a neuron was. His own jab at being a “senior” I guess. After 12 hours – and only a CT head – the doctor assured me it was ‘all in my head’, scribbled a cognitive psych website for me to visit and sent me home. Much to his dismay, Mrs. Gandhi asked to speak to him an hour later and tore him a new one (not me… my mom. You dont want to mess with her).

Since then symptoms continued to get worse. Tingling in my hands and legs that feel like wool, spasms of any kind, anywhere, pins and needles, overheating, shooting down my spine, lower back pain, brain fog and dizziness. I asked ALL of my doctors to assure me a brain MRI would get done, and it was. All clear. But that didn’t appease me since it gave me no clue and no tools in my box to work with the symptoms. Out of nowhere I get a call from the Neuro dept at the Ottawa Hospital saying ‘we are sorry we have to move your appt up. Your Neurologist is able to see you on Jan 20th’ to which I replied ‘I don’t have a neuro doc”. She says “oh sorry I missed this was an initial consult”. I could not be happier.

Jan 14th, I got covid. And while symptoms were manageable, day 4 hit and exacerbated all of the ‘neuropathy’ symptoms. I hadnt pooped in 6 days, I was walking funny, dizzy as all hell. But as long as I could hold out for this neuro consult over zoom I could get some answers.

12:55 and I am logged into zoom, waiting for the host to take over. 1:00pm – there he is, like a bad memory – the emerg Doc. Fuck Fuck why didn’t I put two and two together that this was a follow up. Ok breathe we can get through this. I have nothing to lose. Low and behold, he started with an apology. His kind of an apology but an apology nonetheless. Then we spoke about all of my symptoms with some intermittent “why didn’t you tell me about this last time?” which was met with a blank stare. We got through it though and at the end he says he needs to speak his superior but he agrees this looks like autonomic neuropathy. He mentions Lyrica and how it can help but also how it might make some things worse. Then he puts me in a holding room for 20min.

When the two doctors emerge into the zoom room, the senior doctor does the one thing — the one thing that will make my blood boil. “So, tell us, how did this all start?” — are you kidding me right now? You didn’t cover that when you were chatting for the last 20min? I say “well it started in Nov 202-” …”No, just the tingling” he says. Oh… sometime in the summer.

Ok – so this may be a neuropathy and, if you liiiiiiike we can refer you to another doctor who can do some tests on your nerves such as a skin biopsy. YES FUCK!

But this could also be what Dr Emerg boy told you about when he first saw you which is a functional neurological disorder. Blank stare. “And what is that?” I asked. “So you don’t remember having this conversation in emerg?” he asks like a prick. I dunno, indulge me and tell me all over again. K grab onto your hats for this one:

“We used to call his hysteria but we have done more research to understand that you don’t need to have a history of mental illness to have a functional neurological disease. Basically unlike a degeneration of nerves like MS or Parkinson’s the nerve signals are sent to the wrong part of the brain (aka functional) and your brain cannot compute so it shuts down. Trust me I have seen this a lot in my practice”.

And treatment? “If you are going to go into this with an open mind, we can ensure you see a psychiatrists”. If you were a fly on the wall you would have seen my demeanour change. Not because I am against psychiatrists but because Dr. Emerg asked me at the beginning of the session (alone) if I would consider confiding in a therapist just to ease the burden of all of this. And now its being thrown at me in a different kinda way. Needless to say, I asked “and what about not being able to poop for over a year?” to which he replied “yes I see you have a GI, you’ll need to ask him. Maybe someone who can look at the nerves innervating the colon.” {insert angry face orange emoji}. “But I would start with the psych website we gave you in Emerg and try to have an open mind.”

Before the Senior Doctor left he asked if I had any other questions and I said “so when the results come back will you refer me to someone who actually has an expertise in this area?” and he said “we can discuss it at the time”.

What ‘fighting for care’ really means

It has been a day. I mean it has really been a mind-boggling day. It started early this morning as my alarm clock went off and my body was in so much pain. More precisely, my lower back was broken and I was not going to be able to manage without my cane. As usual I set the heating pad on medium and laid flat on it for 10min before crawling desperately out of bed. I showered, praised the lord I didn’t have to wash my hair, made my coffee and then settled into work. Yes I work from home and this particular day I was able to to work from my couch.

At 9:30am my rheumatologist called to go over my symptoms as one theory is the entyvio/vedolizumab is causing the back pain. While there is one publication indicating as much, these patients had progressive arthritis which I seemingly do not have. Needless to say we kinda parted ways at this point. Before hanging up I let them know about my MRI of the lower back – ordered by a doctor out in Toronto who thinks I might have a compression – and she asked me about what else is going on with my health. We talked about the neuropathy symptoms and the MRI of the brain which ruled out MS. She said ‘it looks like a doctor referred you to a neurologist specifically to rule out MS and it has been, so you don’t have a queued consult anymore”. Reasonably so, I went into a tailspin because that was the one appointment I had been holding out for.

I immediately got on the phone with my GP and left a message about this supposed canceled (or completed) consult and that without a new neuropathy-specific referral we would never get to the bottom of this. My GP and I are generally on the same page about this so I was not worried he would push back.

While I was trying not to get heated, I was hammering away at work, listening to a patient story about ordering one of Invitae’s genetic tests and she said “genetics doesn’t have to be used as confirmatory it can also be used as exploratory”. Here I was, working nearly three years for one of the best diagnostic genetics companies in the WORLD, and I had not looked to see what I could utilize. I got online to Invitae.com and downloaded the requisition form for the Alnylam hTTR no-charge sponsor program which I felt was finally time to order. I emailed it to my GP and offered to do the leg work if he wouldn’t mind submitting it for me.

Hours later, anticipating my period and pushing back some oncoming muscle twitches, I decided to use one last tool in my box. I decided to text (yes this is his preferred method of contact) the doctor in Toronto who ordered me the last MRI (which is on Sunday!!!). I asked if it was possible to see a neurologist. Immediately he said YES. But what I had not realized was, he thought I was asking to see HIM. Sadly, with the pandemic and not being able to tolerate long car rides, I asked if he could refer me to a local neurologist. He said “it would take 1-3 years”, and that was that. Nearing the late afternoon I chalked the day up as a whirlwind and was hoping I’d have a callback or an email in my inbox by the morning.

Logging on to another work session, the hospital called me again. This time it wasn’t the automated appointment reminder and it wasn’t the rheumatologist. ‘Hi Ms Gandhi’ she began, “I am so sorry but we had to cancel your appointment for Feb 24th but Dr. M would like to instead see you over zoom on Jan 20th instead. I know it’s last minute”. … “That’s fine I,… sorry… what doctor is this for? I mean… what type of doctor?”. Confused was putting it lightly. “Oh this is for your neurologist”.

“I don’t have a neurologist” I said politely.

“Oh, sorry I missed that this is your first appointment with him. Is it still ok?”

Shocked and elated I of course said yes, got on my patient portal to confirm and sat in shock for about 10min. I called my GP back and spoke to a human (my favourite lovely human who always helps me out) and told her (the admin) what had happened. We agreed to put the genetic test and the pain meds on hold until we had some data to go on.

What a day.