Hey everyone - your help and support are needed, as I'm absolutely desperate to read first-hand experiences. In the country where I live the doctors that I'm in touch with never had a patient with such severe symptoms as I suffer from, and therefore they cannot help me with this.
I started getting injections last summer every month, years after suffering from neurological symptoms with no diagnosis. I started to feel much better about two weeks after the first injection and much much better after the second - honestly, I've had the best half a year I've had in a very long time.
For some reason, my doctor said that I don't need any more injections, something that turned out to be a very bad idea. Two months after we stopped with the injections I started to feel a little bit dizzy and called him immediately - he agreed to give me three more prescriptions for the next months. 3 days after I woke up in the morning and I couldn't walk without my husband's help (as I felt unstable), felt my right hand really numb and I couldn't even read a paper as I was so tired and foggy. Luckily, I already had my injections on hand so I went to the nurse and got my shot. I started to feel a little better even at the same say, and some of the symptoms completely disappeared after a few days but some of them still remain - tinnitus in the ears and my walking isn't completely stable yet.
Did any of you suffer from severe neurological symptoms? How long\how many injections did it take you to reach full recovery?
Thank you so much in advance. Stay healthy.
Written by
SunofTomatoes
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"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
"Did any of you suffer from severe neurological symptoms?"
Yes, I had many neuro symptoms and was denied treatment by the NHS for years and got to the point of symptoms affecting my spine and also dementia type symptoms.
Here are a few of my neuro symptoms ...
tingling (everywhere..even in my teeth)
pins and needles (everywhere especially hands, feet, spine and groin)
muscle twitches
muscle fasciculations
flickering eyelids
tremors
proprioception problems
dystonia type symptoms
tinnitus
I could go on and on...thankfully the majority of my symptoms have improved or disappeared but I had to resort to treating myself.
Table 1 in above article is about frequent misconceptions that doctors have about B12 deficiency.
Article suggests ....
1) No proof that oral b12 is as good at treating B12 deficiency as B12 injections
2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.
3) Successful treatment should not be stopped
I'm in UK so some of the links I post may have info specific to UK.
I've written some very detailed replies with lots of B12 info eg causes, symptoms, more B12 books, more B12 articles that you may find of interest. See links below. Some info will be UK specific.
I had very bad PA symptoms before they found the problem. After the first few loading doses, I felt a little better but it took months to start gaining back some weight and ease my neuro problems. It's a huge issue that a lot of docs don't understand PA or even want to learn about it. So many suffer because once levels raise, they think a patient doesn't need them anymore. I was lucky that my orthopedic oncologist threw a fit when my Primary wanted to slow down my doses. I self inject 3 times a week now and have for the last 3 years. Plz keep pushing to get the jabs you need. Take in all info on PA and if they still don't help you, find someone that will. Best of luck to ya
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