Thanks to Sally at http://sallyjustme.blogspot.co.uk/ for organizing and hosting again in honor of International ME/CFS Awareness Day. To find more ME/CFS blogs use #May12BlogBomb on Twitter and Facebook. Or see the list.
(The backstory on my MS and ME situation and the experience of having both is here.)
My immune system is attacking my brain and spinal cord. There are lesions everywhere. Dozens. This, 10 neurologists in two states, 4 MRIs and a spinal tap agree, is Multiple Sclerosis. And it's aggressive.
MS treatment—Disease-Modifying Therapy (DMT Slows MS advancement by slowing lesion development) appears to be greatly exacerbating the ME. But I have to treat for MS because... potential quadriplegia among a host of other serious things. The medication to slow lesion development is working astoundingly well on the cluster of symptoms that appeared around the time as the lesions. (A testiment to what can happen in a few short decades once pharmaceutical companies realize there is a huge population with unmet need that is actually not faking it.)
There are a ton of MS drugs, especially from my perspective, having lived with a disease that has zero. But, they all modify the immune system extensively so doctors refuse to change DMTs unless there are severe side effects. I lost eight months and six appointments trying to persuade an MS clinic and a CFS clinic to talk to each other. The MS clinic defers to nobody and the CFS clinic is the red-headed stepchild of the institution, so neither were willing. I tried to educate the MS clinic about ME and convince them that my increasingly severe, limiting symptoms that worsened with each infusion were connected to my DMT. "That doesn't happen to our patients," was the universal response. When I finally found a doctor willing to prescribe a new drug, it was more to do with patient consent than a belief that this was happening. The second DMT turned out to be worse. But it's a pill and doesn't require a monthly trip to a bright, loud infusion center. In terms of total detriment to health this is probably a draw.
I've been in the dark 24/7 since August. I haven't been able to use a computer since then. In December I lost audiobooks. Around that time I started to lose the ability, for weeks at on end, to have short conversations. Sensitivity to stimuli is out of control. I can't be in a car, even on amounts of medication I won't confess in print, for more than a few minutes without eroding my baseline. I don't know how I'm getting to my mandatory MRI next month. On bad days I have to hide under blankets with earplugs when my mom brings my food because having another person in the room is overstimulating. In between I wear an eyemask to block out the slivers of light that seep in around the blackout curtains though they are nailed to the wall. I keep a bottle of water and an applesauce tub under my pillow for when I am too weak to roll over and reach for the nightstand. There's antiemetics there too. Sometimes I spend hours fading in and out, holding onto my water before I can move. I recently and serendipitously got a combination of meds that suppresses photophobia enough to look at my phone sometimes, for a bit. I'm still crashing like crazy, though. Writing an email destroyed the following week. (Yeah, I shouldn't be writing this.) We all know this is bad. We know this is not sustainable. This is what very severe ME looks like. But the medical community does not. My doctors either don't believe in ME, don't believe I could have both, or don't understand the immediate and irrevocable consequences of not treating MS.
Is my MS actually MS? Maybe not. But it looks like MS. It is behaving exactly like MS. The description “textbook” is being thrown around. MS treatments are affecting it as expected. Is my MS caused by an infectious agent involved in ME? Maybe. Is all MS caused by such an agent? Maybe. EBV is a theory among MS researchers. Lyme disease is a candidate in the outer reaches of the "contested disease" community. No one knows because we do not know what causes MS. We don't even understand it very well. For all of their bluster, MS specialists can answer very few of my questions. Is my MS a downstream consequence of ME? I think it's possible, but have no evidence. These are all answers other PwMEs or ME specialists demand when I try to explain my situation. Debate ensues.
But It's not “academic” to me. I have to decide what to put into my body today. What I put in my body and when will ultimately determine how and at what speed I deteriorate. The goal is to stay alive and in the best possible condition so that when better treatments are developed I will be able to benefit. And I'm doing it exhausted, almost entirely without guidance, largely unable to process and recall information, and often unable to communicate or google. The extremely sick person whose medical training is AP Biology (I dissected a ginger tabby!), “used to read abstracts for fun” and "I've been sick a lot" is not the ideal candidate to oversee this situation.
Bottom line: my immune system is destroying my central nervous system. Rapidly. Every day that I am not on MS treatment this becomes irreversibly worse. On the meds, ME is my biggest problem. Off the meds, ME is still my biggest problem but MS very quickly becomes my most urgent problem. The deciding caveat? If I don't treat the MS, I lose the support of the medical system that prescribes the medications and devices I need to function in a daily basis. We're talking about things I need in order to sleep and urinate.
Lack of acceptance of and knowledge about ME have urgent, possibly irrevocable consequences for me, immediately. I do not have another 30 years to wait for the NIH to get funding, projects and physician education rolling. I may not have 30 months before I unknowingly agree to the wrong combination of medications. Right now I’m hoping that treating for infectious agents associated with ME will help somehow— offset the unwanted effects of MS DMT suppressing my immune system or simply improve the ME in an unknown way. The research that exists is not definitive. Most of it is not replicated. I don't trust the diagnostic criteria used in most cases and it was all done on patients able to get to a clinic, much less ill than I am. Also, I can no longer process and recall the information. Yet, this is the option that currently exists so I will do it. I feel as though I am standing before a roulette wheel and the currency is not only my central nervous system but the pieces life it will allow me to have.