April 5/2/23

It has been a while since I have commented on my health issues directly. This month I have news to report.

I have discovered that Covid and MS do not play well together. Truthfully, I now believe I have had had undetected Covid for months. I have been complaining all year of some unnamed low-level virus that came and went with mild but unpleasant bouts of incontinence, brain fog, gastroenteritis, headaches, heavy malaise, and an ‘almost ‘cold that never fully bloomed. These episodes were always accompanied a noticeable reduction in my capacity to accomplish twice a week exercises with my PT. Living in an Assisted Living area of my retirement community as I do, we have been tested for Covid twice a week for a very long time. Well, I finally tested positive for Covid. All of the above symptoms blew up including immediately packed sinuses.

Shortly after getting the positive result, I also experienced a temporary total paralysis of my left leg and then my right leg as well. Fortunately, that only lasted for about thirty-six hours requiring a commode and assistance from nurses and helpers to do anything at all. Overnight, all physical independence was gone. I am so grateful that slowly, my legs were restored to their usual very weak condition but still able to do a passable job of getting me around my room with my rollator. I am not usually willing to take drugs unless absolutely necessary due to abreactions I often manifest with any new chemicals in my hyperreactive body. But I know my body has been fighting Covid for a long time and it needs help to stop this virus from replicating any longer. This hostess wants this corona virus to move on to an uninhabited, remote location somewhere else.

I started taking Paxlovid.  I have read about and heard firsthand from friends the potential side effects of this drug, but I know it is worth the risk to get clear of Covid as soon as I can. Ironically, two days before I was diagnosed with it, I went to see my new neurologist after waiting for months and months. He contradicted the information that my last neurologist had given me. Because my MRI’s do not indicate any new lesions in my brain or spinal cord, the last one said that my MS was no longer progressing. Then why was I getting weaker and weaker? He did not know.

Hence a new doc. This one said what feels true- that my MS is progressing alright, but it is now inside the gray matter of my brain which does not respond to magnetic resonance imaging. It makes sense, even though I am not (thank goodness) manifesting any serious cognitive decline. I mean it only takes a couple of hours to remember a name… so clearly the inroads can’t have caused too much damage in there yet. Researchers have even discovered that some Alzheimer patients may have been misdiagnosed and have MS lesions in their brains instead of amyloid plaques. Still my MS is progressing. Not such a mystery as to why I am steadily losing mobility.

My new doctor wants me to go on the drug Ocrevus whose first iteration was Rituximab. Years ago, I had two infusions of Rituximab which were enough to make me ill for almost a year and obviously did not “stop the progression in its tracks”, which is what my doctor says this new one will do. Ocrevus has a brand-new molecule that even helps those with secondary progressive MS, like me.

Five neurologists ago my MS specialist at the time assured me that many successive drugs he tried on me would also “stop progression in its tracks”. I am pondering my options carefully. Meanwhile I am having new MRI’s of brain, spinal cord, and lumbar region, and we shall see if the results indicate anything helpful to consolidate my thoughts. My quarantine offers me a retreat to contemplate with a still healthy heart and spirit.

8 thoughts on “April: update on my health

  1. Oh my friend! How I wish for that magic wand the doctor seems to promise, and how I understand why you would go very very very slowly and contemplatively in your assessment of whether to go for it or not. I am grateful for this update and for the consciousness shining through it. For you.


  2. Thanks Kim, yes, magic wands have been hard to find lately round the world, due to not enough chip production supply chain issues, climate change, the war in Ukraine, droughts, floods, fires, and earthquakes. Oh and viruses But we have hope!!! love you, J


  3. My dear Judi, Another reminder (as if we need another!) that life in a body is a complex mystery. When do we intervene? When do we surrender to the course of nature? I am in my own version of the same inquiry. I trust that I’ll know when to stop trying to influence the course of what challenges my embodied life and when that time comes, I hope I have the skills to be aware and curious of the unfolding. I imagine you are in the same boat pondering your relationship with the boat and the ocean. I’m with you in the field of Love, Bonnie


  4. Living with uncertainty is certainly a drain. I recall a neurologist once told me he couldn’t help me and to let him know if I found anything that did. I was so bummed. I can’t imagine going through several neurologists. Wishing you peace with your decisions.


  5. Sorry to learn of your new health challenges. You are so wise to be able to think of your isolation as an opportunity to contemplate your options. I wish you a full recovery from the COVID and peace with whatever you decide to do regarding the MS medications. Please keep writing when you can, if it brings you comfort. I’m pulling for you!


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