Too good to be true??? doc will contact the neurologist about B12 injections

[VickyB12]

After having had 18 x B12 injections and my neurological symptoms starting to get better, the doc has now said that he has to contact the neurologist to set a plan and I need to take a break from B12... I can feel my nerves are starting to heal....what if the neurologist doesn't believe in B12? I feel like crying!!!

[Gambit62 Administrator]

cross that bridge if and when you come to it - no point in worrying now about things that might not happen.

[clivealive Forum Support]

Hi VickyB12 Make a list of your symptoms and rate them on a score of 1 to 10 each day on their improvement or otherwise plus any new ones that arrive and take this with you on your appointments to underline the benefits you are getting from your B12 injections.

It's always better to have something down on paper in a face to face meeting as it'so easy to get flustered and forget vital bits.

Is your Folate level healthy? This gets "used up" processing the B12 as the two work together.

I wish you well

[VickyB12 in reply to clivealive]

Hi Clive....thank you so much..no , the folate level was very low and I have suggested that I need supplements.... sometimes it scares me that I seem to have a better understanding of the nature of B12 deficiency.. My big concern is that the neurological damage could be irreversible. I can feel the nerves healing every time I get an injection but I also sense that it will take months to recover.... The doctor implied that I have now enough B12 in my body and I should be getting better without any B12 injections. I will keep a positive attitude and I will wait to see what the neurologist has to say. It shouldn't be so hard to get the correct treatment!

Have a nice day x

[clivealive Forum Support in reply to VickyB12]

(ADVICE ON FREQUENCY OF INJECTIONS)

Ideally you should be receiving more frequent injections as the BNF guidelines say below of treatment with Hydroxocobalamin:-

By intramuscular injection, pernicious anaemia and other macrocytic anaemias without neurological involvement, initially 1 mg 3 times a week for 2 weeks then 1 mg every 3 months

Pernicious anaemia and other macrocytic anaemias with neurological involvement, initially 1 mg on alternate days until no further improvement, then 1 mg every 2 months.

That is the regime your doctor should be prescribing for you.

[VickyB12 in reply to clivealive]

He did and that's why I got 18 B12 injections but I think the nurses complained and went to the senior partner to say that perhaps it is wrong and now he has to contact a neurologist to confirm the treatment ??? He seemed concerned that I have too much B12 now and it should be working to heal the nerves without me getting any more (?) but as you say the advice doesn't state a time limit... x

[fbirder in reply to VickyB12]

He seemed concerned that I have too much B12 now and it should be working to heal the nerves without me getting any more

As him why it was low in the first place, and what is to stop it becoming low again.

Most causes of a B12 deficiency aren't temporary, so temporary fixes don't work. If you're not a vegan, don't take PPIs or metformin, and don't abuse nitrous oxide then it's likely that your deficiency has a permanent cause and requires a permanent solution - injections for life.

[sbotwright]

If you have been diagnosed with pernicious anemia you must get these injections every 3 months for the rest of your life. DIscuss this with your GP and if you have any problems contact the Pernicious Anermia Society and ask for Martin Hooper, He will support you and put your mind at ease. Hope this helps

[clivealive Forum Support]

VickyB12 Have you actually been tested for P.A?

Did your doctor prescribe Folate or are you taking folic acid yourself?

[VickyB12 in reply to clivealive]

Last year they checked the Intrinsic Factor but they said it was negative. I have Hashimoto and...no, they haven't given me a diagnosis. I think that since B12 deficiency and pernicious anaemia require the same treatment, this is all that matters.

In 2012, my B12 was 190 and they advised it was normal and no other checks were done. Last January, I was feeling very tired, I had heart palpitations and pins & needles in my left arm - neurological symptoms ( now I know that the migrainous headaches I had suffered before that are most likely due to B12 def),

When I saw the gp, she recommended checking the TSH and I asked her to check my B12 as well. It was 158 and she then checked the IF which was negative and she advised me to eat food rich in B12. I am not vegan or vegetarian and I eat lots of dairy products and red meat.

I managed to get 6 B12 injections at the end of May and 1 more in the next 3 months. The difference after the 6 injections was UNBELIEVABLE! That is when I knew that B12 was the root of my problems. The nerve pain never left and it came back after 1 month and a half.

Last September I heard a radio programme about B12 deficiency and that is when everything clicked and I started my own research. I went back and I gave my GP all the information I found on the pernicious anaemia website.

The doctor prescribed the folic acid after I pointed out it was at the bottom of the range and it was not helping the absorption of B12.

Vickyx

[clivealive Forum Support]

Well the IF test is known to be accurate sometimes....

Please come back and let us know how your appointment with the neurologist goes.

[VickyB12 in reply to clivealive]

I know but they have not given me any reason for being deficient in the first place. My diet is certainly not a problem. I will certainly keep you posted. Thanks. x