Hi everyone, I was diagnosed with FND in Jan but have been dealing with symptoms since last August, mostly sensory- dizziness tingling, numbness, headaches, tremor, brain fog, palpitations etc etc, I could go on for a while!
My fatigue has got really bad over the last couple of months so I asked for my B12 to be tested, it came back at 154, so when I spoke with my neurologist he thought I’d feel a lot better once that had been treated and I asked how it would be treated and he said injections.
However, my GP prescribed b12 tablets ( after a rather frought phone call and her emailing the neurologist who agreed to tablets rather than injections) she said 154 was borderline low.
Almost 6 weeks on I feel no better, worse infact, so I want to go back to my GP to insist on injections. However I’m not sure how to go about asking ( without things getting ugly) I’m not very good at all this!
Any advice, guidelines, facts, figures etc that would help build a case would be very helpful. Thank you in advance.
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feebee0609
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Good afternoon, I was diagnosed with severe B12 deficiency about a year ago now, after having been ill for years. They started me on the injections 1x/week for 6 weeks and then monthly. Would love to tell you it made a world of difference but afraid I did not notice a thing. Shortly after I was diagnosed with Sjogrens. I have had dystonia for years, and really believed that was accounting for a lot of my issues. I now am certain I probably had Sjogrens disease for many years before being diagnosed and this had been most of my issues. I have been ravaged with this disorder which is involving my perepheral nervous system. I so wonder how many on this board have neurological disorders or diseases that as of yet have just not been diagnosed. There is such a need for great not mediocre medical care. Too easy if it doesn;t show up right away or where their looking for something to be labeled FND. Keep searching friends. Be your own best advocate. God Bless, Cathy
Couldn’t say for sure to those questions. Except my basic metabolic panel and other levels are checked every 2 weeks, because I have numerous low level issues due to not being able to eat and drink much of anything at all anymore.
I would suggest you need to know WHY your B12 is low. If you cannot absorb the tablets, or food borne B12, then tablets will be no use. Or if your Folate is low you cannot convert the serum B12 you get into Active B12. If you take omeprazole or similar, metformin, have coeliacs or chrons or pernicious anaemia the same applies.
NICE guidelines are to treat by injection on alternate days until no further improvement in neurological symptoms!!! This includes 5mg Folic Acid daily.
b12d.org may be of interest or join our Fb group via fndhope.org
Hello, I know this post is old but Im hoping you can explain further. I have FND and NEAD and have been told I am B9 (folic acid) deficient.. what affect does this have on my B12 and why did you mention omeprazole? I take lanzoprazol. Thank you.
Hi Jessie. Omeprazole, lansoprazole, Ranitidine or any inhibitors reducing stomach acid can reduce uptake of vitamins and minerals from our food. B9, B12 and Iron interact to provide a good oxygen supply within our blood around our bodies and especially in FND, to the brain. All 3 need to be at optimum levels. This subject is highly complex and under a lot of discussion. If you talk with Heather Hardie in the group she runs a specialist B12 group and can inform you much better than I. I found it crucial to go on B12 injections and 5mg daily B9 tablets. There is a very specific guideline by the NHS on how to treat and many people are on monthly, weekly or even daily injections.
Deficiencies in one of the three can mask deficiencies in the other so it's important to keep having blood tests on B9and Iron. B12 not so much because once you are having injections the levels shown will be skewed. Most people show over 1000+ ug. It isn't harmful at such high levels but does force the body to utilize what it can and excrete the rest.
Hope you've had regular injections by now. If you haven't already, join the pernicious anemia/ b12 deficiency society UK.. also have you watched Sally Patchlock interviews & movie & living with the fog. All the best. My heart goes out to you.
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