I have been self injecting B12 every other day for almost a year now. Have a past history of stomach surgeries and PPI use; have all of the symptoms of B12 deficiency, fatigue, vision, nausea, leg weakness, lack of sensation, brain fog, etc. My life has gotten so narrow and limited that I have stopped doing many things. I really feel like I cannot tell if things are getting better, or worse. Some things, like lack of sensation for bowel and bladder functioning have gotten worse, but it is hard to tell with other symptoms. I am so spacy that I seriously worry about my mental cognition. I take folate, D, and have iron infusions when needed. Is this normal? My fatigue may have gotten better, but in general, I feel like I have a low level infection most of the time, not well. Does anyone relate?
Thanks, Sita
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Sita505USA
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I have started replies twice on my phone and lost both of the replies, so am not on my computer. My hematologist never believed me to be B12 deficient, since my lab was 472 (200-900), but I had been supplementing. I do have iron deficiency anemia and when my Ferritin gets low, I get infusions.
I have seen many, many doctors, and they are all stumped. The GI doctors say it must be neurological, the neurologists can't find anything, no large fiber neuropathy. I don't want to do a biopsy to investigate small fiber neuropathy. I have had 6 MRIs, 3 CTs, countless blood tests. My insurance, which costs me over $400 a month, won't cover B12 and some of the other tests I want. I have paid out of pocket for some of them, but try to minimize
that.
From this site I have come to think that it may be that my iron, D, folate are still off. I just got back from having blood draws. I am supplementing for all of them, including B12, and will be curious to see what the numbers are now. COULD having imbalances in these areas keep me feeling bad even though I supplement with B12?
PaintLadie, my sleep is bad too and that colors my whole day. I have worked with disability my whole life and know that many people have many very bad health issues. It is very hard to have an invisible disorder going on where people tell me you look fine, and I feel very bad. I appreciate you folks on this site very much!
Your story sounds just like mine. I have a neurologist appointment in a week. I am nervous as I am for every other appointment only because I fear I will leave with absolutely no answers and many bills rolling into my mailbox. My NP is totally stumped and won't diagnose me with anything because she says this is out of her scope. Many ER and Urgent Care visits later I still have no answers. The Urgent care and ER people see the symptoms at their peak and wonder why my docs have not done anything or diagnosed me. I have to space my appointments usually for when I can't function because I get billed for every test. My insurance is very expensive too and also doesn't cover my b12, but I guess it's is better than nothing.
Hi, I can relate. Overall weakness, vision changes, loss of smell and taste, foggy brain, trouble sleeping because I get leg cramps and ache, loss of bladder function; which I believe is affecting my kidneys. I say this two kidney infections later and I believe my kidneys are affecting my adrenals not to mention the bad sleep habits which in turn are effecting my allergies, which are many. I also sometimes can not eat because the food just will not go down and hurts when it does. I can feel it slowly traveling all the way down to my gut. I can't even exercise because I will be recovering for a week if I do. That is just the tip of the ice berg.
What is worse is no one seems to be able to help. Funny though I can tell when I need a shot and it does seem to help after I take it, so all these other unsolved things which do seem to be a common thread among all PA people are really a mystery.
Yeah, every night. I can't get comfortable without it. I have so many supplements sometimes I wonder why I bother eating other than food tastes good. I mean I could use losing some weight.
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