I am Compound Hetero, plus CBS, COMT, and too many more to list here. If I need to attach my report, I will do.
A very well-known MTHFR doc prescribed 5mg of Leucovorin, after I told him how badly I’d reacted to mehtyl’s previously. He didn’t tell me it was actually methylfolate, so I took it. Very bad idea…
I immediately swelled up, but am used to that, so I kept taking it for a day or two and called the office with my reaction. The reactions were edema all over, stinging in my torso and arms, weight gain in my abdomen, back, and thighs (never held weight there before), and all of my muscles had just gone slack–very strange feeling. I didn’t hear back for a few days and kept taking it, and then called again. I didn’t hear back for two weeks, and then only that the nurse practitioner was out of town and couldn’t get back to me. I ended up taking it for about a month probably before finally stopping, and never heard from the doctor.
It is now 4 months later and the swelling has still not gone down, the stinging continues, and I’m realizing my muscle atrophy is really bad (can’t flex 40% of my leg and arm muscles).
My face has “fallen” too. It’s like all of my connective tissue got burned up or something. Like whatever was holding things together (collagen?) is gone. My whole body has changed and feels totally flaccid, hard to describe.
Could this be B-vitamin toxicity or neuropathy? I also had my insulin checked recently and it’s extremely low (am 5’5 and 110 labs, always been trim, hypoglycemic tendency, not diabetic).
Does anyone have an idea of what could be going on?
So grateful for this forum!!!
Peace,
Kate
