Ever since i was very young I've been slowly accumulating the symptoms that are peaking now. Since i was around 8 or 9 i would say. I'm 19 now, and my neurologist diagnosed me with autonomic dysfunction and nerve damage in my legs. I get dizzy and see black upon standing up (orthostatic hypotension), I get migraines, Severe spasms that are MOSTLY on my right side, especially in my right leg to the point where it becomes painful. I have IBS, and have had 12 biopsies done on my upper and lower intestinal tract only to find nothing wrong. I get severely bloated, have gas come up on my constantly seemingly from nowhere, bad heart burn and randomly get diarrhea or constipation that is only alleviated with Pepto for a short amount of time. I get a little foggy sometimes, and lose track of what i'm doing or what i was thinking about. I forget simple words easily and its frustrating. I shake a bit, sometimes worse than others and am incredibly lethargic.
So i ended up getting a full blood work done, the neurologist just said that i need to consume 20 grams of salt a day and lots of water (20 grams is not physically possible, unless you wanted to shovel hand fulls of salt every day. This doctor is an idiot) he wouldn't give any straight answers and was basically "taking us for a ride" if you know what i mean. So when we got the blood work done and took it to my regular physician it was confirmed that i have macrocytic anemia, and the only type of macrocytic anemia that would cause nerve damage (and virtually every other symptom i have) would be pernicious anemia. Now I'm a little scared, because from a lot of reading I've done the farther along this goes unchecked the less likely the symptoms will be reversible by B12 injection, that is if the body is even able to absorb/break down this B12 even in its copious amounts.
I'm in desperate need of advice, I'm not able to work or do many of the things that I want to do, this feels debilitating and I honestly feel like less of a man because of my inability to physically function the majority of the time. I feel I am treated like a breakable egg by almost everyone I know and I just want to know if there's anything i can do to just be normal, or start working towards being normal.
Thank you.
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BatVibes
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In my experience (not a medical practitioner and each person is unique in their response) the injections will make a big difference but you may need them for up to two years at weekly intervals (read the pinned posts from Stichting B12 Tekort to the right of the page to confirm this). And then space out if possible, as appropriate. During that time it's likely there will be lots of ups and downs and setbacks but overall you should see improvement. It's in your favour that you are still young. I am much older than you and I have improved considerably.
Are you in UK? I'm asking because patterns of B12 treatment vary from country to country. Some info below may be UK specific.
How often is your physician going to prescribe B12 injections?
In UK, people with B12 deficiency with neuro symptoms eg tingling, pins and needles, tinnitus, memory issues, balance problem are supposed to get more intensive B12 treatment. You mention some symptoms that would usually be considered as neuro symptoms.
I learnt that B12 deficiency is not always as well understood by doctors as it could be, so I think it's important to read up about it.
Do you have someone supportive who can go with you to appts? Even better if they have read up about B12.
Neurologists
Have you seen a neurologist?
Some neurologists are not as well-informed about B12 deficiency as they could be. People with B12 deficiency and neuro symptoms are sometimes tested for proprioception problems (loss of awareness of where body is in space) and balance problems. None of the neuros I saw ever tested me walking heel to toe with my eyes closed or carried out a romberg test. These type of neuro tests should only be carried out by a doctor.
I am not medically trained, just someone who has struggled to get a diagnosis.
Thankyou for the reply, I'm in the US, Florida. I've seen a neurologist all be it not a very good one. He was able to Identify the autonomic dysfunction caused by the nerve damage in my lower legs, but even with the blood work was unable to (or chose not to) give me any useful information. From what I can tell I'll probably be seeing a hematologist next to get better answers, and if needed another neurologist. Thank you os much for the detailed reply, the information really does help.
In all the "bloodworks" were your serum B12 and serum Folate levels checked as with all your tummy troubles you may well have an absorption problem and deficiencies in those two vitamins would be the cause your macrocytic anaemia?
If you suspect you have B12 deficiency, the first step is to get tested. You need an accurate baseline to work from. If you are B12 deficient, the next step is to identify the mechanism causing the deficiency. This is something you’ll probably need help with from a medical practitioner. Once the mechanism is identified, the appropriate form (injection, oral, sublingual or nasal) of supplementation, the dose and the length of treatment can be selected.
Regarding the possibility that it may be Pernicious Anaemia, ask your "regular physician" to check whether you have "Intrinsic Factor Antibodies" (IFA). Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
Please be assured that there is life after P.A. I have had it for 46 years and I'm still very much "clivealive".
I am not a medically trained person but if you can post any test results you have on here there are others who will be able to give you good advice.
first, it isn't macrocytic anaemia that causes the nerve damage it is the B12 deficiency caused by the absorption issues PA causes, which results in both macrocytic anaemia and nerve problems.
folic acid deficiency will have similar effects as the two are used together for a lot of processes - including production of healthy red blood cells and some of the processes that maintain nerve function.
So, what has probably happened is that you have an auto-immune problem, PA, which is affecting your gut and has specifically affected the mechanism the body uses to absorb most of its B12..
nerve damage can take a long time to heal but some of the effects on the nervous system from B12 deficiency can also resolve very quickly because it isn't necessarily damage to the actual nerves but other processes that have stopped running properly but will start running properly once you have enough B12.
The injections are a way of building your B12 levels up very quickly - the most effective way of doing this - as the amount you absorb is basically 100%- though your body will also be removing a lot of that - and the rate is faster if the levels in your blood are faster.
How people respond to b12 and which forms they respond to varies a lot all you can really do is work with your doctor, or experiment with the frequency of medication, delivery method and type of B12 to see which is the best for you - though if you are in the UK standard would be use of hydroxocobalamin.
Fortunately B12 isn't toxic so you don't have to worry about overdosing - just about getting the right levels.
It can be very scary and probably isn't helped by the fact that B12 deficiency also causes you to be more susceptible to anxiety.
I had 40+ years of depression and anxiety which went when I finally started to get the B12 levels that I needed - I still have a few neuro problems - occasional carpel tunnel - but the tarsal tunnel is much improved.
suggest that you make a full list of symptoms and try so that you really can monitor progress and try not to get hung up on symptoms that may take a long time to improve (or might not improve) but focus on the progress you are making).
Im going to siggest you have tests done for: b12, folate, d and full iron panel. Once those are done you can begin supplimenting the ones you are low in.
In my experience, in the US we dont get an MCV over 100 very often as our food is fortified with folic acid, which "masks" very high MCV. But folic acid alone doesnt work without b12 and iron to form healthy red blood cells.
I also had symptoms for at least a decade and wasn't diagnosed until there was some neuro involvement. Like you, I also had terrible gut symptoms, especially for the last two years before diagnosis. In my case, injections (first 2x weekly and then 1x weekly) stopped the *progression* of symptoms, but it was a long time before I began to see symptom reversal. I would say 12 months before I started to see measurable reversal and it was really well into the third year of treatment that I began to return to anything close to the functionin I had before. I'm saying this because a lot of people give up when they don't see quick improvement. It took a long time for the damage to be done and it can take a long time for it to heal. Also, I had to radically alter my diet to address the PA gastritis. I should mention that I have never had my B12 levels tested. I was diagnosed through symptomology + elevated homocysteine and MMA, confirmed with a subsequent IFA+ test result.
Hi BatVibes. I agree with everyone here. I can't believe they haven't checked your b12, folate and instrinic factor. You should do so right away. I also have elevated mch and mcv with low rbc with my PA. Good luck and plz post your results
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