If you have followed me since my illness, you have known then how I have lamented that Neurology couldn’t see me until April 11th. Well today was finally April 11th. I had a relatively early appointment of 10:30. This was a marathon appointment as you will see below, and turned into a much longer appointment than expected.
I saw Dr. Goldstick, who although older, is one of the premier MS Neurologists in the area. He is definitely on the “old-school” side of the scale still using handwritten notes, and a note taker where possible. However, he had clearly read my massive medical file, and we quickly got into the brass tacks of what may or may not be going on with me. The reason I saw him, is because basically it is a coin-flip on whether this is Multiple Sclerosis or Transverse Myelitis, and there is not enough information yet to know which way this pendulum will swing.
All three of the most-likely end diagnosis trees are scary. Coming in at a 40% chance is the Transverse Myelitis, the usually one-time attack where your immune system eats away at part of your spinal cord. To make this diagnosis Dr. Goldstick wants an MRI, an EMG (acupuncture with electricity) and is going to run some more bloodwork for rare antibodies.
Coming in at another solid 40% chance is Multiple Sclerosis. This totally scary diagnostic tree is also calling for a Spinal Tap (Lumbar Puncture) MRI to check for lesions in my brain and spinal cord, the EMG and a special vision test which I will get next week. The repeat lumbar puncture is so they can see if my spinal fluid is clear. Dr. Goldstick believes that I reported to hospital possibly too late in January to catch the MS items in my spinal fluid, or for markers of inflammation. He said, your SED rate was awful high in January, so we know there was inflammation somewhere causing this, we just have to figure it out. Multiple Sclerosis is a more progressive disease usually, which I hope it is NOT this, but if it is I will deal with it.
Coming in as a dark horse contender at 20% is Vascular Myelopathy. This is where the spinal cord’s blood supply is compromised in some way leading usually to paraplegia. In most cases if it is not treated it can lead to total paralysis over the course of 2-3 years, or if it is a more massive problem it can be fatal. The thing is this can be fixed, and if caught in time some function can be restored. That however means surgery, and potentially a massive one, with outcomes uncertain.
Another point of my appointment he went all the way back to early March 2020. If you knew me around then you know I had a really bad “flu” that came on real sudden, spiked a ridiculously high fever, crazy cough, the whole nine yards so to speak.. This was the week before COVID-19 shut the whole world down. In the USA at least, you couldn’t get a COVID test if your life depended on it during that time. On a PCR test, I did test positive for flu A. I have never tested positive for COVID. I have been fully vaccinated and have gotten my first booster. Dr. Goldstick wouldn’t say, and neither would any of my other doctors, but it is not out of the realm of possibility that this may be a post-viral syndrome COVID or otherwise.
Now there is at least a plan, and it involves more tests. I have to get more blood work, a spinal tap, an EMG and this vision test. I also have to get an MRI, which is in itself an interesting proposition. Dr. Goldstick so wants me to get the MRI, he is going to message Dr. Muth to see if he will change out sparky’s battery early so that I can get one. Of all things my remote check for sparky came in today and I have 2.5 years left, with 75% pacing going on. So to get the MRI, and get the diagnosis, I may have to get cut open and get a battery change. All my parents did when I told them that was shake their heads.
It is a LOT to process right now. I am happy there is a plan, I am NOT happy about all the tests, particularly the spinal tap, and potentially having to have surgery to replace sparky. Of course that may pale in comparison if I have to have a more major surgery if it is the Vascular Myelopathy. In some ways today left me with more questions than answers.
Tomorrow is another big day as I have my wheelchair evaluation. I hope to be able to test several different cushions, and fingers crossed get a better loaner, and also get on the right road to getting back to teaching.