Yesterday, I was discharged from #physicaltherapy. I was treated for impairments caused by #CIDP #autoimmunedisease. At my worst, I had difficulty walking and experienced a few falls. I have recovered substantially (but have a way to go). A 🧵on things that helped me... 1/n The biggest "step" was admitting and accepting that I was handicapped. Clinging to the belief that my "old self" would power through #disability only created discomfort and limited my potential for improvement. Embracing my new disabled identity was hard, but necessary. 2/n

I’m dealing with an #autoimmune #neuromuscular disease, #cidp, the chronic cousin of #gbs. Symptoms began August 2022, 1 month after testing + for COVID for 1st time. Maybe I count as #LongCovid? In any case, here’s a🧵on some tricks to deal with hand weakness. For context, my grip strength has declined and stabilized to ~13 lbs over the past ~150 days. Typical adult male strength is >100lbs. Many daily behaviors — which I used to take for granted — are impacted by this level of hand weakness. 2/

Let me tell you about peeing in a urinal… held by someone else.
A 🧵 on learning to battle embarrassment as a patient and how fear (of shame) can impact treatment. #peepressure 1/ I undergo plasmapheresis (PLEX) weekly as treatment for #cidp #autoimmunedisorder. With peripheral vein access we use an 18 gauge needle and aim for the large veins in the inner fold of the elbow. 2/

‘Sola dosis facit venenum’ (Latin: all things are poison and nothing is without poison; only the dose makes a thing not a poison)—Paracelsus (1493–1541).

Let me tell you about the risks associated with vitamin B6.

A 🧵 on how I likely poisoned myself with a #dietarysupplement. 2/11 Vitamin B6 is a water-soluble vitamin that is naturally present in many foods () and available as a dietary supplement. In coenzyme forms, B6 supports a variety of functions in the body including nervous system functions (https://t.co/iEA00Yd98d).hsph.harvard.edu/nutritionsourc…
ods.od.nih.gov/factsheets/Vit…

In March, I received a lumbar puncture. This was key to receiving my chronic inflammatory demyelinating polyneuropathy (#cidp ) diagnosis. I'm sharing my experiences in this 🧵to update folx and to help others who may be struggling similarly with #autoimmunedisorder #raredisease 2/ In August 2022, I noticed numbness and tingling in my hands and feet. The stocking-glove pattern is common in peripheral neuropathies because the nerves that innervate these regions are the longest in the body. If you experience these symptoms, get them checked!