Grateful!! A Neurologist worth keeping! - Pernicious Anaemi...

Pernicious Anaemia Society

32,672 members24,065 posts

Grateful!! A Neurologist worth keeping!

lambuth_eagle profile image
17 Replies

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!

Written by
lambuth_eagle profile image
lambuth_eagle
To view profiles and participate in discussions please or .
Read more about...
17 Replies
wedgewood profile image
wedgewood

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

lambuth_eagle profile image
lambuth_eagle in reply towedgewood

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.

jade_s profile image
jade_s in reply tolambuth_eagle

Like the neurologist in the US who told my sister she's just a tired mother of two young children. 🙄

lambuth_eagle profile image
lambuth_eagle in reply tojade_s

Those doctors act like we don’t know our own bodies…infuriating!!

Nackapan profile image
Nackapan

Marvelous He knows as he needs it too.

As my late understanding neurologist did in the UK

Twaddletop profile image
Twaddletop in reply toNackapan

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.

jade_s profile image
jade_s

Wow!! Amazing you could find such a understanding neuro. I didn't know they existed anywhere on the planet 😂 Very happy for you!

Nackapan profile image
Nackapan in reply tojade_s

Shouldn't be by chance should it !

jade_s profile image
jade_s in reply toNackapan

Exactly! Why are they so clueless. I lost count of the number of times docs have told me you can overdose on b12!

rogergee profile image
rogergee

That's just amazing! I'm delighted for you. Good health to you.

EllaNore profile image
EllaNore

That's amazing!! So happy for you. Having a doc on your side is everything!! Congrats.

WiscGuy profile image
WiscGuy

Thanks for posting. It's always a relief to hear that knowledgeable doctors exist.

Kazania profile image
Kazania

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😃👏

Cobalt1312 profile image
Cobalt1312

Wow, what a wonderful provider!! So happy for you!!!

lambuth_eagle profile image
lambuth_eagle

I do! I wish everyone could have a doctor like him.

Litatamon profile image
Litatamon

How wonderful. Happy for you.

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

lambuth_eagle profile image
lambuth_eagle in reply toLitatamon

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!

Not what you're looking for?

You may also like...

Third Neurologist

Thank you for your thoughtful posts. Trying to disipher consultation. Glad my husband was with me...
Nackapan profile image

Can anyone recommend a good haematologist or Neurologist for pernicious anaemia

Hi can anyone recommend a haematologist or neurologist who has a good understanding of pernicious...
Rett713 profile image

Neurologist appointment

I had a phone call in the week to book me in for an appointment to see a neurologist on Sunday...
Showgem profile image

Treatment Confusion Need Help

Hi everyone, I am 20F, been receiving b12 injections for the past year. I get them weekly at my...
Purplegirl2 profile image

B12 overload on the liver

Following on from my last post My GP has just seen me. He did a basic Neuro exam He said he...
Paula1710 profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.