Friday, June 16, 2017

Cleveland Clinic

"Today as I head off to Cleveland I feel happy. I feel happy, and I feel grateful."

I wrote this as we were taking off, so you can see what kind of mindset I was in. After the last few weeks of things finally coming together, this felt right, and I was so grateful for my parents for doing this for me and being by my side. That's what I remember feeling.

The first day was an exhausting travel day. We had to connect through Toronto to get to Cleveland. So we took the very short flight from Montreal to Toronto (about 50 minutes), and then went through US customs there and took the very short flight (about 35 minutes) from Toronto to Cleveland. Sounds short and easy, but these tiny little flights actually take all day to get through. I was pretty much devastated when I found out the air conditioning on our flight to Cleveland was broken, on a 33 degree day. But with ice, I got through it!

We were staying in a really cool looking area downtown, and I was pretty impressed by Cleveland from the start! We grabbed a bite at House of Blues and went into a couple of tourist-y stores before crashing back at the hotel.

We woke up bright and early (around 5:30 AM) on Wednesday morning to head to Cleveland Clinic. Our first appointment was at Global Patient Services. I got to meet the kind coordinator who scheduled all my appointments throughout the last couple of months, and we had a meeting with a financial advisor.

From there we were escorted to a different building where I'd be meeting with the neuroimmunologist. Our appointment was at 9:00... and we were called into our appointment at 9:00. This may not seem like a big deal to some, but in Canada, it's an anomaly to be taken into your appointment on time. We are grateful when we have to wait 30 minutes. My doctor's office at home who is worst with this is my urologist (who I absolutely love and is totally worth the wait). The longest we've waited is 3 and a half hours. So it was quite a breath of fresh air to be taken right when we were scheduled for.

The neuroimmunologist was very kind, and a couple of things came out of the appointment. Firstly, he definitively diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome). Secondly, in regards to my neurologist at home suspecting Stiff Person Syndrome, he is suggesting a trial of IVIG. Hopefully this is something that will be life changing for me.

We were finished there quite early, so we had the rest of the day ahead of us and did a little bit of good old US shopping (I love you Target and Five Below) before heading back to the hotel to relax.

We woke up bright and early, but significantly less bright and early than the day before, for my Gastroenterology appointment on Thursday. For him, we ended up waiting half an hour, but like I said, that's nothing for us! Even though this appointment wasn't the most eventful, I loved the doctor. He was great at explaining things, and super funny and down to earth. He basically explained to us what kind of tests we'd need to do to find out if it's only my colon involved in the dysmotility, or if it's also my small intestine. So hopefully that is something we can figure out in the future. He was recommending starting the same medication as my gastroenterologist at home recommended to get things moving better. He also recommended a trigger point injection for an area where I have myofascial pain on my abdominal wall.

When we finished this day, we continued on our US shopping adventure... probably a little too hard, but that's okay. I crashed hard, but survived!

On Friday we slept in, and headed to the airport for our flights home. After what felt like the longest travel day, I'm home with Big in my own bed.

All in all, despite the reason for our little trip, it was awesome getting to visit a new city. Life at home gets a little mundane and it really did feel like a little adventure.

Monday, June 12, 2017

Stiff Person Syndrome

June 2017 came in like a wrecking ball, and I apologize if you have Miley stuck in your head now like I do.

After years of searching for answers, and coming up with nothing, I've received two diagnoses in the last week, and one possible diagnosis. My internist told me I have Autonomic Neuropathy. Next I met with my Gastroenterologist, who told me I have Intestinal Dysmotility.

Lastly, I met with my Neurologist, who thinks I may have a disease called Stiff Person Syndrome based on my blood results and clinical symptoms, and is going to treat me as such. Since brain fog is a real thing over here right now, I'm going to copy and paste things from different websites and include sources, so you can learn about it if you'd like to.

This would be the answer to my walking/gait issues, which I thought we may never know.

"Stiff Person Syndrome (SPS) is a disease of the nervous system. Progressively severe muscle stiffness typically develops in the spine and lower extremities" Source  

"SPS is extremely rare. Although it is not possible to determine the exact prevalence, it may occur in fewer than 1 per million. The disease is more common in women (the ratio is 2 women for every man effected). There is no predilection for any race or ethnic group. There is an association with diabetes and perhaps over half of patients with SPS have or will develop diabetes. Other autoimmune diseases have been found in association with SPS, for example: thyroid disease and vitiligo." Source 

"Although most often the disease begins insidiously and progresses over years, in some cases symptoms can develop over weeks. The first symptom is usually a persistent progressive stiffening of the back or a limb. A sensation of aching or stiffness may be noted. This progresses with time and is described as stiffness, rigidity, hypertonia or increased tone. Additionally patients experience spasms of the involved muscles which are characterized as severe, tremendous, intense and painful. The examiner may feel there is a volitional component. When stiffness and spasms are present together patients have difficulty ambulating." Source 

"The pathophysiology of the disease is autoimmune. The most common pathologic correlate, anti–glutamic acid decarboxylase (GAD) antibodies." Source 

"Treatment may involve high-dose diazepam, anti-convulsants, or intravenous immunoglobulin (IVIG)." Source 

"Although SPS is a serious potentially life-threatening disease, and some of the treatments have serious potential side effects; the course of SPS is variable. There are patients who, with proper treatment, are able to return to activities they enjoy." Source

Before I even have time to let this sink in, we're headed to Cleveland Clinic. Who would have thought all of this would come days before my trip? When we get back I'll be starting the first line of treatment for SPS, which is high dose diazepam.  All I know is one thing... despite any sort of prognosis, I am so ready to close this chapter of my life and move onto the next. And here's to seeing what other answers and opinions may lie in Cleveland.