Honestly just looking for reassurance and perspective because I'm kind of spiraling
Sevens months. It's been seven damn months since the first symptoms of my deficiency started. Tremors of the hands, poor dexterity and coordination. Then tingling calves and feet, and weak wrists and ankles. Then unbearable fatigue, whole-body muscle twitching, and even slurred speech and difficulty swallowing (from diminished control of my tongue).
It's been five months since starting "treatment". I put that in quotations because it's sorely lacking, according to the sticky, this community, and online journals. Daily oral cyanocobalamin, sublingual methylcobalamine, and monthly injections of cyanocobalamin. I cannot afford to buy my own injections, and I have had no luck convincing a doctor to prescribe me more frequent injections because my blood serum levels are well above normal. I am "no longer deficient," though I do have a positive diagnosis of pernicious anemia.
Though many symptoms have improved or disappeared (slurred speech, dificulty swallowing, crippling fatigue, tingling), the ones I did not list still remain, and I can't even tell that they're getting any better. The twitching and the way my wrists and hands feel are whats really freaking me out. My muscles twitch nearly any time I'm at rest, and my wrists still feel weak and stiff, and my hands still feel clumsy and slow. I'm worried silly about the possibility of some more nefarious neurodegenerative disease like ALS, though I know it's incredibly rare. Since I have normal serum levels and havve no "significant" loss of function, nobody is interested in my symptoms. Everybody just wants to wait and see. And maybe that's all I need to do, but I don't know how to do that.
Posted May 5, 2025, 2:14 AM UTC