Horrible numbness/tingling.

[dreamthief]

A few months ago I had a minor cyst removed on my left groin area. That very night my left thigh fell asleep and did not wake up until the morning. I cried all night. The next day was okay but night time my lower leg fell asleep. The next day my left arm fell asleep while driving (I am left hand dominate). And now here I am with so many more symptoms and the doctors are telling me it is all due to my anxiety.

My symptoms are; heart palpitations, excessive sweating to the point of pools of sweat, lethargy, depression, lack/loss of cognitive ability, numbness/tingling in both hands/feet, numbness in both arms/legs(more common at night to the point of crying) but does happen 10-15x per day at any given time in any extremity, sharp pains (pin like stabs)random places on my body throughout the day, teeth grinding, lack of balance, sores in mouth after eating..

I have been vegetarian for 5 years this month. I was diagnosed with very low ferrous sulfate last month. They did an MRI and a electrode test that both came back "wnl". I am at my wits end, I have break downs every day from the pain and have a horrible time understanding simple things that used to be easy for me to learn or do. The doctors will not do anything and I have taken two b12 tests that came back within normal ranges. However, 3 years ago I was "almost" b21 deficient but no one ever talked to me about supplement or anything so I did nothing and am having to find out that I should have learned more about becoming vegetarian. I am only now learning about b12 deficiency and all the symptoms check off with my symptoms. Please help! How can I be treated and what test can I take to help me? The doctors were thinking an autoimmune disorder but have since stopped helping me so I am on my own. Are b12/anemia/autoimmune disorders linked?

Thank you

[clivealive Forum Support]

Wow dreamthief I'm sorry to read about your pain and suffering.

I'm not a medically qualified person but you say your Vitamin B12 level was almost "deficient" three years ago and that you "have been vegetarian for 5 years this month" which suggests to me that you may well be B12 Deficient now.

Vitamin B12 can only be obtained naturally from foods such as red meat, fish , eggs, seafood, poultry, dairy produce such as cheese & milk.

How many of these do you not eat?

Do you know if you had nitrous oxide administered for your surgery? This is known to deplete levels of B12.

What medications are you on? As these too can affect absorption of B12.

Do you have any tummy problems or eating disorders.

There are many reasons for B12 deficiency and if you could supply some answers there are others on here who will be able to give you good advice.

I wish you well.

[dreamthief in reply to clivealive]

Thank you for your reply!

To answer your questions:

I did not have nitrous oxide during the procedure.

I hardly eat foods that are in any of those categories, maybe 2/3x a week.

I am on buspar for anxiety- it worked well for a month and now my body does not respond to it at all and I still feel very anxious.

As of this month whenever I eat a big meal I feel nuasested/sick to my stomach.

[dreamthief]

Are there tests I can take to prove I have pernicious anemia? I feel helpless and I read that the numbness is stage 4 in b12 deficiency and can be fatal...

what can I do about the doctors not believing me and doing no further investigating?

Gabapentin did not work.

The past week I have been getting sores in my mouth just from eating bread.

[clivealive Forum Support in reply to dreamthief]

As I say, I'm not medically qualified but it may be that the Buspar and the Gabapentin are affecting your B12 level. Can you see any reference to that on the information leaflets that comes with them?

It might be a good idea to speak to your pharmacist about those medications and ask him/her to check on B12 interactions

From what you say you appear to have digestion problems so really you should get those checked out by your doctor. Low stomach acidity can affect B12 absorption.

Are you vegetarian from a moral standpoint or is it a personal preference? Not regularly eating the foods listed is not going to help your B12 level to become healthy.

I wish you well.

[fbirder in reply to clivealive]

Yes, gabapentin can affect B12 and folate levels.

ncbi.nlm.nih.gov/pubmed/212...

[dreamthief in reply to clivealive]

I thought I had low b12 a few months ago but believed the drs when they told me my ranges were "wnl"

However at the beginning of this month I started eatin chicken and broths because my whole system feels out of wack and I had been craving it, it's a rather slow process though since I've not had that in my system for 5 years

[Foggyme Administrator]

Hi Dreamthief. I'm really sorry that you are having such problems and that your doctors are letting you down. Unfortunately this is something we hear very often. Doctors are far to quick to ascribe the symptoms you describe to anxiety (though some of them might be 😀), and then write them off. But not many of them know that anxiety can also be a symptom of B12 deficiency. And your B12 deficiency might not only be due to diet (in most cases, it's not) so please don't beat yourself with a big stick for being vegan for many years.

Firstly, to answer your last questions, yes, there is a strong link between PA and autoimmune disease, though autoimmune dieseases is not possible cause for B12 deficiency. In addition, autoimmune conditions tend to turn up in groups - if you have one autoimmune condition it is not unusual to also have others.

So...to the B12. You say that two serum B12 tests came back in 'normal ranges'. Do you have any idea what those result were (and also the reference ranges). Doctors often tell patients that results are normal,when in fact they are not. Bumping along the bottom of the reference range may not be good enough for some people (in Japan they treat anything under 500 - which is well above the bottom of the reference ranges used here in the UK).

You also say that one test showed you as being 'almost deficient' (was this,your last one?). This means that the results were almost certainly at the bottom of the scale. The crucial point here is that your were having what do,sound like the symptoms of B12 deficiency. At this point, your GP should have tried to discover the reason for the low B12 (blood tests for PA etc) symptoms and he should have treated you for B12 deficiency. All the guidelines state that medics should treat symptoms, not blood test results.

Also - you say that you have low 'ferrous sulphate'. I take it you mean that you're low on iron? If so, your GP should be treating this (it can make you feel quite ill, with some of the symptoms you describe).

You are not alone in having trouble getting your GP to believe you. GP's are ill-informed about B12 deficency and PA and most people who come here experience the same kind of problems that you're having. Not good enough.

So, what can you do. First, the Perniciuos Anaemia Society website contains a list of symptoms associated with B12 deficiency. Print the list off and tick all the symptoms that you have (if you do not belong to the PA Society, you can find a symptom checker list at B12deficiency.info - or in many other places on the Internet). This can then be presented to your GP.

Next - read the PAS pinned posts that can be found on the right hand of this page when you log on. They are a very good source of information and will tell you all the basics about B12 deficiency, including all the guidelines, diagnostic and treatment protocols. Highlight anything that is relevant to your case so that you can spot the information easily. Then put all the information together and take it along to your GP so that you can present an argument, backed up with evidence, as to why your should be tested and treated for PA.

This is never easy (most GP's don't like being challenged and appear to dislike patients who 'know too much'. (Ha). So you will have to be quite brave and determined. It would be a good idea to take someone with you for support. And GP's usually behave better if there is a witness in the room (sad, but true).

So what do you ask for? Blood tests you need - full blood count (FBC), anti-IF and PCA's (to check for PA), serum B12 (to check current status), folate (often low in B12 deficiency and B12 / folate work together so B12 wont be absorbed proplerly if folate is low), serum ferritin and serum iron (a full iron panel would be better if you can get your GP to do it). Tests also recommended are MMA (methylmelonic acid) and homocysteine - but many GP's have never even hear of these - worth asking.

It's important that you don't take any B12 supplement (tablets, nose or mouth spray, or patches) before your GP does these tests as this will skew any results and make it extremely difficult to get a diagnosis.

And just a quick word about the PA tests. These are only accurate about 50% of the time so if you test negative, you can still have PA. Most GP's don't know that.

So...the first step is to collect some evidence (as described above) and take it along to your GP to try and persuade him to test and, more importantly, treat you. This might work, it might not. But try this first. If it doesn't work there are other things that can be tried but I don't want to overload you with too much initially (this stuff can really make your brain ache 😀).

If this first approach fails, post again and people can leave more advice about what to do next.

B12 deficiency and PA are quite complex conditions (as you're finding out) so please post any questions you have. There are always people here who will pop in to help in whatever way they can.

Good luck with your GP and please let us know how you get on x

[dreamthief in reply to Foggyme]

Thank you all so much for the advice and knowledge! Things are not getting better but I was able to get someone to take an MMA and a folic acid blood test. Besides that they are not taking me seriously. Will those two tests be enough or do I need to try something else?

Folate came back as: 18.6 ng/mL Normal range is >=4.0 ng/mL

MMA has not come back yet..

And is it normal for the numbness to be worse around menstral cycles?

Thanks again, Foggyme !

[MariLiz]

I would suggest you get copies of your last three blood test results so that you can see for yourself exactly what your levels are. Contact the Pernicious Anaemia Society website for a full symptom list and print out and tick all that apply to you. If you join the society they can intervene with GP surgeries to ensure people are getting the correct treatment.

Have you tried taking B12 tablets to supplement your diet? Has anyone suggested to you to do this?

If you were borderline deficient three years ago, it is very likely that you are deficient now. For some reason the range for B12 starts very low here. If you were in Japan anything below 500 is considered deficient. You should also be treated because you have severe symptoms. Some people can have plenty of B12 flowing around in their blood, but their bodies cannot use it and get it to cell level.

Good luck with everything. MariLiz

[dreamthief in reply to MariLiz]

Thanks for your reply MariLiz !

I haven't been taking b12 tablets because I was advised that it might mess up the test results however on my medical record it shows that I was diagnosed as B12 deficient in 2014 but never was spoken to about it and I am confused as to why they are not doing more if I was "diagnosed" so what more can I do? The diagnosis did not show up in my record until I requested the second B12 standard test that came back "wnl" and I was told it was there the whole time when I have proof it wasn't. Now however because my past two blood results are "normal" they will not treat me or help. I posted my results and dates on this page as an image.

Thanks!

[MariLiz in reply to dreamthief]

I have looked at your results, and can see that the doctors will be reluctant to treat on your levels, even though they were lower on an earlier test.

Your ferritin is low too, have you tried to supplement this at all? If this is low it makes it harder for your body to use the B12 in the blood. It could be the reason you are experiencing symptoms?

I am no medical expert, just someone who has experienced problems of my own trying to feel well.