After 10 years of back and forth with every doctor, neurologist, ent, Gi, etc.
They chalked all my symptoms of stress and fibromyalgia. Until recently i started feeling lots of pins and needles in legs and pain especially around pelvic region ( sharp pain that happens at least once a week). My head feels foggy, constant headaches , left eye pain, lymph nodes feel swollen, cramping in feet, heart racing , stabing in flank area. My doctors ran CBC and said my levels were low but the same as 4 years ago so wasn't concerned. She said b12 was low normal and just take a supplement. When the nurse called me with the results - I broke down. Told her abouot all my issues including memory loss - she listened and had the doctor run intrisic panel. I will get the results tomorrow. I'm freaking out because it's gone on so long that I will have permanent damage or worse stomach cancer . Any advice on how to keep it together? I'm 50 with four young children.
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Makomybaby
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I can understand you feeling anxious, as it's worrying to feel unwell over a long period, especially when you have children. I think stomach cancer is a very remote chance, your symptoms sound more like vitamin or hormone deficiency.
I had all your symptoms which have all improved with B12 injections. I still get them back occasionally so I'm now investigating thyroid and I've been referred to a rheumatologist.
There will be more knowledgeable people along to advise you but perhaps make a start with printing out B12 deficiency symptoms and see how many you have? My B12 was 198, almost the same as yours and I needed to hold onto the walls to get from my bed to the bathroom, all of 14 feet.
Try to eliminate one thing at a time and B12 def is a straightforward place to start gathering the evidence to present to your G.P.
Thank you so much for your reply . It's so comforting to know that someone understands. My friends, and even husband think it's just stress or the fibro which they diagnosed me 10 years ago with first symptoms . What is the normal procedure after the shots? Do they biopsy stomach lining through a gi dr.? Thank you.
Please ask for injections to get your b12 levels into mid range. My guess is you will feel so much better it will be like night and day! It was for me! The feeling of being ill for along time and no one getting to the bottom of it is overwhelming plus low b12 causes those feelings as well! Other countries have a much higher threshold for b12 deficiency around 500 so compared to that remember you would be considered very low. My neurologist wants me to be close to 1000 at all times because that is where my neuro symptoms are at their best. Good luck and fight for what you need!
Thank you for your response. Oops I reply on the wrong post. Yes, I do get migraines but these headaches are different. Not as painful but feels foggy if that makes any sense.
I'd suggest being well-informed about b12 deficiency as my experience is that it isn't always well understood by some doctors.
"had the doctor run intrisic panel"
It is possible to have PA (Pernicious Anaemia) even if Intrinsic Factor antibody test has negative result (called Antibody Negative Pernicious Anaemia).
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS (Pernicious Anaemia society).
Thank you so much for all the information. My instrinstic panel came back negative and dr said I don't qualify for the shots. I'm so frustrated because I really feel it's my low b12 that is causes all my problems. Do you have any other suggestions on blood testing that can stear towards a diagnosis. My doctor joked that she has a coffee that says "don't confuse my medical degree with a google search." So that's what I'm dealing with. May need a new doctor. Are neurologist more serious about b12 deficiencies?
My personal experience (I'm in UK) and that of some of the others I know with a ME/CFS diagnosis was that once ME/CFS was diagnosed all investigation into the physical causes of symptoms stopped.I knew there was a physical problem but at one point no-one would listen to me.
Some medical staff in UK appear to have the attitude that ME/CFS is a mental health condition. I had to be very persistent to get doctors to consider other possibilities.Hopefully the attitude in USA towards ME/CFS is more helpful.
B12 deficiency can sometimes be misdiagnosed as ME/CFS.
In relation to B12, I look at results for B12, folate, ferritin and full blood count (known as complete blood count in USA). One thing I did learn was to always get copies of my blood test results.
Have you had a test for MMA, Homocysteine and Active B12 (holotranscobalamin)? results for these tests may be affected if you have already been taking B12 supplements.
Someone who has B12 deficiency and/or folate deficiency may develop enlarged red blood cells (macrocytosis). Someone with low iron may develop small red blood cells (microcytosis). A person who has both low iron and low B12 and/or low folate may appear to have a normal range MCV on Full (complete) blood count as effects of low iron on red blood cells may mask the effects of low B12/low folate.
It might be helpful for people to know which country you are in as B12 treatment varies between countries.
"Are neurologist more serious about b12 deficiencies"
In my experience not necessarily, very few of the specialists/consultants i saw had what I considered to be a good level of knowledge about B12 deficiency. I had multiple neuro symptoms plus other symptoms typical of b12 deficiency but my B12 levels were usually normal range. I did see one neurologist who at least was willing to consider possibility of B12 deficiency.
I have a fibro diagnosis and my personal opinion is that the fibro symptoms are due to underlying problems with B12.
I'd certainly recommend reading "Could it Be B12" by Sally Pacholok and JJ. Stuart. The book is written mainly about B12 situation in USA but obviously lots of interest to people in other countries. I found it very helpful to read the case studies in this book as I could recognise aspects of my experiences.
After reading this book I knew I was on to something...it spurred me on to find out more about B12 deficiency.
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