Feeling MUCH better after 7 loading doses!!!

[HopetoB12better]

I had 7 loading doses and one more after a week (part of a long dosing regimen) and I feel almost back to normal!!! I can walk and balance better, my feet and leg pain is virtually gone, I am thinking clearly and the fatigue is GONE!!! Also, the gabapentin that I was taking for pain was a LIFESAVER so please ask about that if you aren’t already on it. I have thanked my neurologist over and over for literally saving my quality of life (and life for that matter!!) My regular doc missed the diagnoses of b12 deficiency and it took a well trained Neuro to diagnose just FYI. Prayers for all who are suffering. This has been a terrible experience.

[fbirder]

So glad you've got it all sorted.

[Nackapan]

Wonderful news. Must be great!!

[Hidden]

Well done I’m so pleased for you.x

[wedgewood]

Brilliant news ! Really pleased for you !

[Cherylclaire Forum Support]

That's really great news.

[Kazania]

Wonderful news. Stay well.

[Litatamon]

Hi Hope,

Such wonderful news. You must be exhaling, as I know how scary it is not knowing.

I too found my own b12 diagnosis after years of symptoms. And I was lucky as well, a lot of my symptoms went poof during or right after loading.

I know this makes me a lousy person but I can't express how incredibly jealous I am of your fatigue making a disappearing act. Well I guess I just did, laughing. So envious!

Are you going once a month now?

What form of b12 were you on?

Happy for you Hope. All the best.

[HopetoB12better in reply to Litatamon]

I am on the one that starts with a c. Lol. Long word - can’t remember the name. I had 7 loading doses and now on once a week for a month then once a month for a year with blood tests at 3 and 6 months to check levels. My fatigue literally vanished in a week. I am insanely grateful. I wish you well. ❤️

[Litatamon]

Hi,

I was running off this morning and didn't want to be an absolute downer on such a joyous thread. Just wanted to share with you that I had some symptoms reappear going towards the first month and some a few months in, after playing out almost exactly like you. Doesn't mean you are going to at all, of course. Be optimistic. I am for you. Take in the joy of healing.

And do know the reappearance of symptoms for me, and feeling like they are trying to come, has never been at the intensity of before diagnosis and during loading.

( I am about eight months in.)

Just want you to know that it *can be* a bit of a rollercoaster. I personally like to be aware. But everyone is different on what they want to hear and how it all plays out.

Okay depressing post is putting on the brakes!

Back to your celebration. Thank God you found your neurologist. He or she is a keeper. And hopefully they mentor others. Let's all pray for that!

It must feel like a brand new life. Lovely.

And three cheers to cyanocobalamin.

Poor cyanocobalamin, it is not fun being the forgotten child.

[HopetoB12better in reply to Litatamon]

Hi - I am seeing a little bit of the roller coaster effect as you describe. After the first 7 shots, I saw immediate relief. But then when I waited for the week in between to start my weekly shots for a month, I did start to feel a little burning in my feet and some pins and needles in various places. They are subsiding a little bit after the first weekly shot but I do see what you mean and others have told me this too. I also like to be aware so thank you for your input.

So, being 8 months in, how are your symptoms overall? And have you had your bloodwork checked during these 8 months?

[Litatamon]

I am down to a couple of symptoms but they are major in my life. Fatigue, leg strength (no atrophy though, just using the muscles), exercise recovery and for my walking to feel normal, strong and fluid again.

All listed have improved greatly though. And some could be a vitamin d issue as well.

My hands can get stiff still and some pins and needles, but for whatever reason it doesn't play on me the same.

I get a ton of mental strength looking back to all the miraculous healing I had almost instantly. I had about thirty symptoms. It really is something to celebrate and cherish for most of them to leave.

-----------

I woke up being even more impressed with your neurologist. I had to really push for a more aggressive loading. But I even had to push harder for more for a gradual protocol going into a month. My doctor relented but she relented with "I will agree to it, but it will make no difference." It wasn't even as gradual as yours. So interesting that a neurologist from an esteemed hospital feels differently.

[HopetoB12better in reply to Litatamon]

My Cleveland clinic Neuro said the standard dose they use is once a day for 7 days, once a week for a month and once a month for 6 months, then a recheck of bloodwork and symptoms. If still symptoms then continue monthly for a year and possibly forever if there is an absorption issue, which can be an I exiting or bacteria in the stomach or colon (that can war the b12 before it gets absorbed) and I am waiting for my endoscopy results as we speak!! The first 8 doses were life changing!!

[Litatamon in reply to HopetoB12better]

So wonderful. I remember feeling "How is this possible?" Poof go the symptoms!

Up here they are not doing endoscopies (virus). I am still waiting. My GP, when questioned at diagnosis, did not want to investigate anything as "the protocol is still the same". I fought that yet again very recently and she gave in this time but still questioned endoscopy needs. She thought a colonoscopy would cover everything. She has left it up to the gastroenterologist. Yay! Because I really want to fight more.

Hopefully she or he decides on both.

Will be curious to hear about your results. It is extremely comforting to hear about good care. Makes me hopeful and happy for you.

[HopetoB12better in reply to Litatamon]

My GI doc rushed my endoscopy because I had stomach bleeding from too much Aleve! But he did say that’s the only way to find out if there is bacteria or infection in the stomach.m, which can be the cause of malabsorption.

[Litatamon]

Yes had blood work checked. And I have argued about the reasoning, regarding the b12.