okay so i posted awhile back about having seizures that were relieved on folinic acid. I am missing some pieces from ancestry that can confirm if I can handle the folinic because I ran across an issue with lots of puffiness, water weight and delayed period.
I have responded poorly to methylb12 which triggered severe neurological issues, I am assuming from cbs issue I have. unfortunately the neurologist missed the mark when I told him adenosylcobalamin got rid of the numbness on the right side of my face and that it got rid of the dystonia in my right arm dystonia went away. I was in desperation with worsening symtpoms anf the neurologust trialing medications fieat. after a very severe side effect to an epilepsy medication used off label for migraines and no response from the neurologist, I then used some guidelines from the b12 deficiency group after five days the numbness in my face decreased, severe anxiety decreased, and the electric jolt sensations that were leading into “seizures” decreased And now on day eight have gone away.
the naturopathic dr whom I have seen before cancelled our free consultation assuring me she was “well versed“ in Mthfr, she is indeed not well versed. When I began discussing my issues particulary my b12 related symproms she decided that it was psychological, and she wanted me to do a gi map(which is great). she also wanted me to decreased my b12 to two times a day into two liwer doses, I was pulsing small doses frequently throughout the day and had significant relief, anyways, I did her recommendation and my face went numb and the neuropathy pain returned in within 12 hrs, She also asked why I was taking the b2 To which I said it was important for b12 conversation anf the mthfr enzyme. I also upped my b6 for two days in a row , I do have a confirmed deficiency in jt and returned to my normal b12 doses and I am almost back to normal after a half a day. She also said I can take up to 1mg of methylfolate and in her practice sge has not seen issues, I cannot tolerate it at all rught now. and she was confused about it. she also made sure to let me know mthfr is a predisposition, which I am aware but I believe in my case I am having major issues. also, i believe I was overmethylating as I was speaking to her on the ohone too from 200mcgs of methylfolate alone. she also wanted me to take a b complex with 800mcgs of methylfolate. she also wants to add TMG anf if I am not mistaken it is a methyldonor.
I fear I will face neurological damage if I don’t find a physician who knows what they are doing and can help me. I respond to adenosylcobalAmin(this form in a matter of three days reduced the nerve pain in my right arm) and I don’t do well on hydroxob12. I believe she will turn down injections, i believe I can get them from a compounding pharmacy with a sceipt but I have to call around. I am not sure why she was so resistant, she used to be a very trusted dr to me, but I can deal with that disappointment another time. I am in desparate need of help, she costed me 400 dollars.
a side vent, she grilled me about my marriage, about my sleep, about if my youngest still sleeps with me and if he will go back to his bedroom. in my overmethylated state I dumped some info tgat I otherwise would never have said 😭😭😭😭
here is my stack
phosphatidyl choline
alpha gpc
magnesium malate
seeking health adenosylcobalamin smaller doses broken up multiple times a day.
vitamin b2 in r5p form
p5p vitamin b6
i will be adding b1 because I had a flagyl reaction last year that resulted in seizures and in my research a b1 deficiency can help reverse some of the neurological issues if lingering, but I am hoping to get a lab done first before adding to confirm
and she did say my vitamin was a bit low, I knew that and was taking vitamin d 10,000 mcgs and 200 vitamin k every other day, which she said was okay to do.
if there is anyone that can recommend or is willing to help me please? 🙏
thank you so much!