I had my 5th neurology appointment this year with the same neurologist. He’s been amazing and today was a great appointment. At my last appointment 3 months ago he increased my frequency from once a week to every 3 days but just wanted me to try that for three months. I was nervous that he would be insistent that I space them out again. (I don’t know why I was worried about that because he always listens to me and comes up with a reasonable and appropriate plan.) I tried spacing out this last week to see how it would go and it didn’t go well. When he asked how I had been doing and I gave him my report he listened and then said, “so, we stay with the current schedule. You can always try spacing out again if you want but just try one extra day. You gauge how often you need the injections. Listen to your body and go from there.” 🤯 He even reiterated that I can’t overdose, said he takes 5000 milligrams orally a day, and is big believer in B12. Said again, absolutely no reason to test B12 levels as long as I’m doing injections. I thanked him for being the only doctor I’ve seen to understand how much I need B12 and he said, “that’s the thing. So many doctor’s just look at lab ranges and don’t want to consider that “normal” isn’t alway normal for each individual person. They have to listen to the patient and base treatment off symptoms not lab ranges.” I seriously could have hugged the man!! 🤣 The more I learn about PA, the more I realize that I found a diamond in the rough when it comes to my neurologist.
Just wanted to share because while I have super supportive friends, they just don’t get how awesome this kind of visit is like fellow B12 deficiency and PA patients do!
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lambuth_eagle
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One fantastic neurologist, with his head screwed on. l I note that you are in the USA . I’m afraid we don’t have neurologists like that in the U.K. . Very pleased for you l
Based on comments and posts in some of my US PA groups, this kind of neurologist is very rare here too. I would add hematologist to that statement too. The first one I saw insisted my symptoms were not B12 related. The only good thing he did was tell me to go back to the neurologist. 🤣 I remember that second appt with my neurologist and arriving armed with research and notes, ready to advocate for myself. Never had to…neurologist listened to how I was doing and immediately said, “this is what we’re going to do…” and started me on injections.
It’s great when you find a knowledgeable doc who actually listens to you. I was very lucky years ago when I was diagnosed with ME. My then GP had a family member with the same issues and I was so lucky not to be told “it’s all in your head” as so many others were at that time.
Hurrah! I am so very pleased that you have got such a wonderful empathetic consultant. It’s marvellous. I only wish, as I’m sure you do, that everyone was so lucky. Keep well😃👏
My neurologist had people.shadowing him and told me I needed to eat more meat. Insert eye roll.
One of the best parts of your post is that since we assume that your neurologist absorbs well, since he takes pills, then that 5000 is daily & he doesn't even wince at that for his own health.
Wonderful information & again so very happy for you
Yep! When he told me how much he takes daily he said, “I’m a big believer in B12” then he laughed at himself and said, “well, clearly. Or I wouldn’t have you injecting so often.” An understanding doctor with a sense of humor…the best!
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GP stopped my injections and referred me to the neurologist. How long before I can have another B12 test?
Horrendous Experience at Haematologist Appointment
Neurologist appointment 
B12 injection appointment
