Friday the 13th

So we are attempting to revive our blog which has been dead to the world for some time now. For a while it just seemed like our lives weren’t exciting enough to blog about. Unfortunately this changed last week.

Last Friday (eerily, Friday the 13th), Randy was diagnosed with an incredibly uncommon neurological disorder called Transverse Myelitis. You may be asking yourself… wait… what is Transverse Myelitis? Even if you have a medical background, it is so uncommon that you may not remember the details. Basically, it is a disease that causes inflammation within the spinal cord and can cause a host of scary and debilitating symptoms. Only 1-4 per million people are diagnosed with it per year (I knew he was 1 in a million… but didn’t have this in mind!). Here I will tell his story and then write a bit about what it is and what it means in our case.

I will start by saying that Randy has been completely healthy his entire life, except for having high cholesterol. About 2 weeks ago he began feeling numbness and tingling (paresthesias) in his feet after riding on a dune buggy (desert ATV-like-thing). The next day he woke up and the paresthesias had spread to his calves. At first we thought it may have been related to the dune buggy ride or maybe a side effect of the statin he started a month ago. He stopped the statin, but the symptoms kept climbing up his legs, and into his belly creating a banding or "girdle" sensation. Still we were not very concerned, but thought it warranted a visit to his PCP, Dr. Murray. Dr. Murray was actually quite concerned and did not think it was related to the statin. He ordered a brain MRI, blood tests, and called a neurologist so he could be seen the next day. By the time R saw the neurologist his paresthesias/dysethesias had risen to about the T6-8 level in his chest and into his fingers. Also, his legs had become stiff, or spastic. Interestingly, symptoms were completely symmetrical and very well-demarcated. On physical exam he had hyper-reflexia in his lower extremities and near complete loss of vibratory sense in the affected areas. His neurologist gave him the tentative diagnosis of TM and ordered a spine MRI for the next day (last Fri). After R got the MRI he came back with a CD which I viewed. Although, I am by no means a neuroradiologist, it was fairly obvious that there was a large area of gadolinium enhancement (swelling) within his cervical spinal cord. Immediately I called his neurologist and it was decided that R would be admitted to TMC for 3 days of IV steroids. It is frustrating to think that if I had not been pushy about seeing the CD then we would not have known about the lesion until the following Mon. Even when I told the neurologist about it he did not want to start treatment until Monday (for no other reason that I can think of other than convenience). I pressured him into admitting R for treatment and am ultimately glad I did, even if Dr. B is annoyed with us. There is substantial evidence showing that starting steroids early is can help lessen symptoms if not prevent them from worsening. I have read many stories from other people diagnosed with TM on an online support forum and it is sad when people have to wait weeks for steroids and their symptoms (which may be become permanent) progress during that time. The problem is that the disease is so uncommon that many neurologists dont recognize it or know what to do. We are lucky at least that his PCP and neurologist were on the ball enough to realize it was serious and then to diagnose it correctly. Fortunately, so far Randy's symptoms stopped progressing since Thurs, the day of the neurologist appt.

Now for what this all means for us. Basically, the natural course for TM is that it causes inflammation to the spinal cord and then stops. 70-90% of the time it never comes back. Over the next 2 years the symptoms will either completely resolve (1/3), partially resolve (1/3), or stay the same (1/3). Most people with TM have paresthesias, bowel and bladder issues (ie. incontinence), and weakness or paralysis. Many people spend MONTHS in the hospital and some even require mechanical ventilation in the ICU. In other words, Randy has a VERY mild version of TM. At this point we can be fairly confident that he has been spared all the other really debilitating symptoms. As you can imagine, it was terrifying when his symptoms were progressing. Then for the next question... what started all of this? Afterall, TM came from an Arizona sky (aka clear, blue). Turns out it usually does affect healthy, young people. About half the time the cause is never determined, but the rest of the time there is another disease detected which is underlying it ie. MS, Lupus, or an infectious disease that triggered it (ie. HSV, EBV, HTLV etc). Of the underlying diseases MS is the most common. So that is obviously a concern for us. We would love to have whatever caused this just be done and leave us alone.

Randy is taking this remarkably well and keeps up a great sense of humor about all of this. He has Ruth, his Mom (also an MD), and me doing all the worrying for him. The first day he came home he started exercising and stretching, which is hard since he feels exhausted after a one mile walk (he was running 5 mi multiple times a week before). He has a great attitude though and is determined to regain his endurance.

Fortunately, work has been impacted very little from all this. My attending (boss) was kind enough to relieve me of the second half of my long call on Fri. Sat was post call, Sun I had scheduled off, and then Mon was the start of a 1 wk vacation. How lucky was that! Although, we had hoped to be sailing down the Baja peninsula right now, I am just so happy that I can spend this week with Randy without having to worry about other people who are sick. Randy has not been working, but is studying for the bar exam he is scheduled to take in Feb. Fortunately, he has still been able to get some studying done.
Over the course of this past week Randy is tapering his prednisone and starting to feel some recovery!! He now feels an 80-100% improvement in the paresthesias in his feet, buttocks, and legs. His worst symptom right now is the banding around his abdomen. He says it feels like someone fastened a really tight belt just above his belly button. He also has stiffness and funny sensations in his hands which makes typing difficult.

Yesterday we learned that his cerebral spinal fluid was negative for oligoclonal bands. This combined with his clean brain MRI makes a future MS diagnosis very unlikely. We are still waiting for more tests to come back which may tell us if there is an infectious cause… but MS was our main worry which has been largely cast aside.

In conclusion, we will be okay and feel confident that no matter what the future has in store, we will be able to handle it. Randy's neurologist is very optimistic about his recovery and so are we.

Thank you all for your love and support.