AML, anxiety, Multiple Sclerosis, Not Today MS, pandemic

JCV Negative and MS Check-Up!

How can it feel like this year has lasted 1000 months and flown by at the same time? My last check-up with my neurologist was in February, right before COVID and quarantine hit our state. That visit was a little disheartening and dramatic as we learned about a potential pituitary tumor (thankfully after a look from a neurosurgeon and a monitoring of my hormones and symptoms, that concern has been put on the back burner and we will check on our new friend at my next MRI).

My “falls risk” bracelet matched my sweater at my recent neurologist appointment.

My regular six-month checkup to check neurological function and run blood work was last month. My exam was great and we had a good time chatting about upcoming runs and how we are staying active through the pandemic. Then, we focused on my bloodwork from June. Everyone remember my Salmonella Episode? Well, my lymphocytes tanked during all that.

.48 or 480. Anything less than 500 sets off the PML alarms. I’ve talked a bit about PML before as a potential, fatal side-effect of taking Tecfidera. Having lymphocytes less than 500 for any length of time can put one at higher risk for PML, so my neurologist said she wanted to run a JCV test and said that if my Lymphocytes hadn’t rebounded, we would need to have some serious discussions regarding my medication.

I received news last week that my JCV Test came back NEGATIVE and my lymphocytes had rallied back up to 1000.

The only not-so-great news was my Vitamin D had tanked, again. Even though I’m taking 5000 IU of D3 over the counter daily. UGH. I knew it though… The fatigue had been creeping back and I found myself feeling exhausted upon waking. I’m a few weeks into my prescription, 50,000 IU supplement and already feeling more like myself! I’ve said it before, and I’ll say it again–if you are struggling with energy, fatigue, depression, etc, have your doctor check you D levels! For MS patients it’s especially important to keep those levels HIGH.

So, here’s my question for you: What brand of OTC Vitamin D do you take? I’ve just been taking Nature Made or whatever was on sale and apparently my body is not absorbing it. I’m looking into a few natural brands that incorporate K2 and MCT oil to aid in absorption and I am hoping to find someone with experience with one of these brands! Feel free to comment or email me.

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