Why symptoms recur: Why do symptoms... - Pernicious Anaemi...

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Why symptoms recur

Why do symptoms return back some days.. can we be symptom free ever? Can we live a normal life ever.. especially in the morning enery goes v down and symptoms are at peak in the morning and after exertion..

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It’s just a case , I believe , of supplying your body with the right amount of B12 and folate . We all have different needs ., and have to find the right amount by trial and error . This could be as often as twice a day , or as little once in 3 months . Of course , if you have been deficient for a long time , irreversible damage can be done . Physical exertion , no doubt, uses up larger amounts B12 , as does drinking alcohol .

I think that one needs to pay great attention to having a good nutritious diet , owing to the fact that PA patients have lowered stomach acid , which plays an important part in the absorption process of vitamins and minerals

It’s a good idea to get an extra injection in , if a busy action - packed day is anticipated . Of course one can only do this if one is self-injecting . Your GP wouldn’t oblige ! In the end we have to work out our own salvation when it comes to treating PA , as the medical profession really doesn’t understand it , and mostly doesn’t wish to either, for whatever reason . . Best wishes .

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How does one know that damage could be irreversible as my brain mri is normal?and do I need folate as my folate levels are high 24 though max is 20

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No, you do not need extra folate if your levels are high. Taking extra B12 does no increase the body's requirements for folate (or anything else). Some of the causes of a B12 deficiency can also cause problems with absorption of other vitamins, so supplements may be needed if there's not enough in the diet.

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I thought that if one, for instance, is self-injecting then we do need more folate than if we were say, having monthly or 3 monthly injections. I am sure I had that advice somewhere from a forum.

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Yes, you may well have read it on a forum. But it's wrong.

Your body needs enough folate. And enough is the same whether your B12 level is normal or mega-high.

A B12 deficiency is like having a car with an oil leak. To keep the car running well you need to keep the oil (B12) above the 'minimum' mark on the dipstick, by topping up regularly (injecting). How regularly you need to top up depends on how bad the leak is.

Your car also needs petrol (folate). But the amount of petrol it needs doesn't depend on whether the oil is kept just above the 'minimum' line or just below the 'maximum' line. As long as there is enough of both then the car works OK.

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good analogy.

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You obviously don’t need more folate if it is at a satisfactory level . I only can speak about what I have experienced over the years, as there is no definitive information about irreversible damage caused by P.A. My feet burn like hell after over 3 years of treatment , so I assume that they have been irreversibly damaged . When my feet were totally numb, my G.P.s diagnosis was” ideopathic” although he knew that I had P.A.

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What all symptoms u had 3yrs back?? Wat all resolved? How often do u inject

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Also my level is above 2000 is that fine?

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Yes . No problem . My B12 is always off the scale !

All my problems are gone ,except the boiling hot feet ( they only seem hot.To the touch they are normal .

A little bit of breathlessness remains as well . I inject once a week .

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Thank u That gives a lot of hope... I feel even I might b normal in 2-3yrsas hope is a big thing...was ur deficiency severe in the beigining or mild?

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My B12 deficiency on paper was 150 at diagnosis ( but my own GP thought that was OK , so I went to see a private GP , who tested me for PA , and it proved positive ) . In my body , it showed as complete exhaustion , breathlessness, dizziness and numb feet . My mental condition experienced confusion, anxiety and hopelessness . Of course it had built up over a few years . I don’t really know how many , but certainly 5-6 .

We all have a different tale to tell . Symptoms are so varied . It’s a strange condition . I’d never heard of it until I had my diagnosis . I just knew that something was wrong with me !

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How much b12 do you personally need to remain symptom free Wedgwood? I have a similar question, in that having been discovered to be B12d and having had loading shots, now SI weekly, will my levels ever plateau without needing so many shots. I’m wondering why it dropped so low in the first place!

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I find that I need one injection a week to keep symptom free . I have no idea if that will be permanent . If they return before a week is up , I will adjust the frequency . As the shots are so cheap ( about £1.10 ) it’s not concerning .

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There is a difference between a high or adequate B12score in bloodwork... and and your ACTIVE B12 score which tells how much is ACTUALLY being absorbed into your body. THAT IS THE IMPORTANT SCORE. The problem for me is that I live in the US .... and no lab does the Active B12 test or they call it the HoLo T/Holo TC test. If offered in your country.. take advantage of it...

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Hi, I was also diagnosed with B12 deficiency 2 years back with neurological symptoms like numbness, burning feet, tremors and muscle twitching. I now take weekly methyl injections. I felt better, free from all symptoms except burning feet, from 3 month's and recently started working out. I am afraid, all my symptoms are coming back now. I experience tremors and numbness in hands now. Is it something to do with working out? Should I stop exercising?

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Hi I’m also from India... which neuro r u seeing for weekly injections as my neuro is asking me for 3minths injections

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I have met many neurologists and everyone were following a fixed regime of b12 injections which is probably 3 monthly. And they did not work for me. So, I started self treating with increase in the frequency. I have stopped meeting neurologists now.

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How long were u deficient for? How much time it took ur symptoms to go?

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I do not know how long I have been deficient. My B12 was 67 in July 2017 that's when I was diagnosed. I was on 3 monthly injections which did nothing. So, I have been taking weekly injections from 8 months now and have seen an improvement. But, now they are all coming back. What are the symptoms that you have? And what was your b12 level when diagnosed.

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Mine was 80 n I hav been deficient for v long u guess... cos my symptoms were fainting spell,tremors,couldn’t stand,couldn’t concentrate, confusion,lot more...some are improved some I’m still struggling with... my b12 levels have gone v.high I’m worried for that

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As far as I read, high level of b12 is not toxic. So, please stop worrying.

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No it’s abt carrying a child in a normal level

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Ya high levels of b12 are dangerous in pregnancy

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I not aware of this. Please follow doctor's advice on this

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I know a good neuro in Hyderabad dr Sudhir Kumar I have been consulting him online he’s from apollo

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He prescribed 3 monthly injections and Gabapentin, a pain killer. I met him

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Oh even he didn’t understand as he’s such a good doctor

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No one understands b12 deficiency. Only way is to self treat. We have been deficient for so long and it might just take years to fill that gap.

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He told me nerve damage takes time long v long it may take years also I wonder how come u dint find him good

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This happened to me twice. I was on Cyanocobalamin and for whatever reason it barely kept me well than I started to gradually worsen, so I switched to Methylcobalamin. It worked great for the first few months then stopped working altogether and all my symptoms came back with a vengeance. Turns out MethylC has a short shelf life and not stable. I had been sold bad Methylcobalamin. It is very expensive where I am and I just could not keep doing Methlycobalamin. I am now on Hydroxocobalamin, daily 1ml, now that it is available by prescription in the USA. It has worked the best for me so far. I still have some reoccurring symptoms, but also just found that my Homocysteine levels are below normal. So symptoms could be related to that. That appointment is not for another 2 weeks.

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For how long have u been injecting? How much improvement can u c?

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I started on Cyanocobalamin maybe 5 years ago after 5+ years of being severely sick. I never felt better but stopped getting worse give it like 3 years and I started getting worse again. I did metylcobalamin weekly and sublinguals for maybe a year. The handful of doses I felt good and could tell it was working than my symptoms came back, to the point of being checked for MS, to find out my Methyl was no good. It was going to cost me $35/1ml of Methylc plus $45 shipping from a reliable source. So $75 for 1ML total to be injected weekly in four parts. I can't afford that per shot because I spend a ton on Supplements and Asthma/allergy treatments as well. So long story short I've been doing every other day Hydroxocobalamin Self injections and they have been most consistently working. I am now pregnant and have been on daily 1ML shots for two weeks. I still get daily symptoms but they worsen quickly with out the daily shot. Daily symptoms include muscle spasms in hand and legs. Nerve lightning pains in fingers and toes and muscle pain, labored breathing, difficulty swallowing, sleeping difficulties, I'm sure I could think of more given the day.

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Hey don’t take me wrong but are u aware that high b12levels in pregnancy can b complicated for your child..pls ask your doc..I don’t wana scare you...but because of this reason I’ve given up on carrying a child

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Good to know. I have an appointment with a hematologist in two weeks I'll have to ask him what the safest plan would be. My primary doc is a Nurse Practitioner but she admits she just doesn't know enough. I don't mind sacrificing what is necessary only if it means I twitch a little more but baby is okay. I'm on baby number 3 and my pregnancy needs have been slightly different with all of them. I always worried they did not get enough B12 as babies and never thought they could get to much. My five and two year old seem fine health wise, both chubby as can be. Thank you for the heads up.

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Were you taking b12 shots that frequently in your first and second pregnancy?

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Yes, but not as frequently as with this pregnancy but my levels where always high and dropped off quickly. My levels when I've been tested are usually over 2000 even when I was taking the bad Methylcobalamin; which was having no affect on my symptoms. This pregnancy is different in that I am getting neurological symptoms in the absence of such frequent injections. That was not the case with the other two. My first pregnancy I was on monthly injections but felt they were not adequate in keeping me healthy. During my second pregnancy I was taking shots 1 to 3 times a months depending on how I felt that month or if I just forgot. When I would forget usually I got sick and would spend days recovering after receiving my shot. I did feel weird about getting my shot daily. I thought every other day was much already but when you start short circuiting physically well what do you do. I will get a second opinion though to make sure baby is safe and see why my Homocysteine levels are below normal.

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Do u have any idea what ur levels of b12 must b...in both your pregnancy... I can also plan accordingly if u had healthy babies despite having high b12 levels

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you said ... 1 ml... do you mean 1 mg???

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1ML or 1000mcg injected

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I have read on this forum that physical activity can use up more B12 . So perhaps take extra B12 injections or temper your physical activities , or both . I’m sure you will be able to find a compromise. It’s not so difficult to stay physically fit without “work outs” . Just plain walking and household chores can keep one fit I believe . Also , do Hydroxocobalamin injections not work for you ? They are much cheaper. I have tried both and found Methyl no better than Hydroxo. Best wishes .

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Hydroxo isn't available in my place and methyl was working for me until recently. My question is, if most of the symptoms have gone, meaning nerves have healed to an extent, why are my symptoms coming back?

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Trineurosol h is available in every chemist shop in India that’s hydroxocobalamin

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I didn't knew this. But, I take neurokind od which is 1500mcg, so high levels are better if it's only once a week.

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R u from Delhi?

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The symptoms are not healed for ever . They will return if you are not getting sufficient B12 . If I undertake a quite physically demanding activity , I will give myself an extra injection ( I self-inject, as many do on this forum ) Pernicious Anaemia cannot be cured , but symptoms can be kept at bay with the right amount of B12 . This varies enormously from person to person, from say twice a day to once in three months .

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It means nerves can never be healed but some neuros day that it can b healed it takes time

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I do not have PA and absorption issues. My deficiency was probably caused because of me being a vegan all my life. Does that mean nerves don't actually heal? Coz if they heal symptoms should go forever.

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If you were B12 deficient for a long time ( the reason is irrelevant ) , you could be left with some irreversible damage .

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I have had this same question fir YEARS. I WILL GET TO THE POINT where I feel almost healed ( leg and feet numbness, heaviness, inability to wear any shoes with pressure etc.) THEN.... all the symptoms return. THIS HAS HAPPENED AT LEAST 3 times in the past 2 1/2 years. I read this is how the healing goes ...yet I don't understand it.

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You might have bought bad Methylcobalamin it is not a shelf stable form of B12. You might have to use a different supplier.

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Are you keeping a logbook of all your symptoms? There are good symptoms of nerve repair that are similar to the bad symptoms from the deficiency. Very confusing to sort out. The “good” ones repeat in a pattern within 72 hours of an injection.

Also keep track of your food as you may develop intolerance for some foods you have been eating regularly. For me, it was both gluten and dairy (casein protein- very similar to gluten)

The main issue is that there can be a 3 to 72 hour delay from eating to the onset of the symptom or sequence of symptoms. So it makes it hard to sort out as well.

How much folic acid are you taking to support the B12 injections?

Any new issues with sunlight? Or stressful activity? Symptoms from these can be delayed as well.

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I’m not taking any Folic acid as my level is too high of folate... did ur deficiency got reversed? If yes in how much time and how often do u inject?

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I inject cyano weekly. I acquired my deficiency from stomach surgery so it will never get reversed.

The only thing I can hope for is to reverse some of the nerve damage that occurred before the deficiency was diagnosed. Nerve repair is occurring but very slowly.

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For how much time have u been on treatment?

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Since 2008.

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It’s not reversed since 10years?? What symptoms r u left with

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I have a permanent absorption issue with B12 so it will never reverse.

However with weekly injections I’m able to maintain and symptoms such as tongue, balance and brain fog come and go with my level of activity and stress.

I have some permanent nerve damage in my right hip that I’ve come to realize will never get repaired but most other neurological symptoms are gone.

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Is ur brain damage reversed? If yes how much time did it take?

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How do you know that nerve repair is repairing ? Are there any tests ? I have not heard of any. Are you basing your comment just on how you feel ?

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Yes. Symptoms.

I initially found some short term memory tests online and was able to correlate my test scores to symptoms. I used the logbook to track progress over months and years.

For my long nerve damage in my hip, I’ve been using balance and stability while walking to monitor. Progress has pretty much plateaued so I’m considering consulting physio to recommend ways to rebuild any lost muscle.

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