Recovery stagnating. What now?

[snakely]

Hello all. I'm a 30 year old male living in the US. Five months ago, I zeroed in on B-12 deficiency as the most likely culprit of my four years of slowly worsening symptoms. The symptoms seemed to match up better than anything else I'd researched, and I know that my great-grandfather had PA starting about the same age (and possibly his mother, but it was before they knew what B-12 was and she died at age 42). My symptoms are (in rough order of presentation chronologically): shortness of breath, chest pain, dizziness / unsteadiness when moving, joint popping / pain, muscle soreness / frequent pulling, headaches, brief moments of utter confusion, paresthesia, muscle spasms, lack of energy, require 8 - 10 hours of sleep, palpitations, tremors (particularly when drowsy), and vision problems.

So I started taking daily oral B-12 tablets as soon as I could, and for about a month, my symptoms steadily improved (especially shortness of breath and muscle soreness). But since that time, my recovery seems to have stagnated. I've also tried augmenting the tablets with cyanocobalamin self-injections weekly and folic acid daily, but I still feel stuck. I've tried going off the oral tablets a couple times and the worst of the symptoms come rushing back within a few days.

I did go to see a doctor about the B-12 a couple times, but--as I'm sure comes as no surprise--he seemed to know almost nothing about it. After I tried to carefully school him, I was only able to get a serum and IF test done and a prescription for the injectable. Unfortunately, the serum was taken after I started the oral tablets, and the 1200 result didn't seem to mean much. The Intrinsic Factor was negative.

My thought now is that maybe I don't have B-12 deficiency or that alone. My symptoms, family history, and response to additional B-12 would seem to corroborate it, but the test results and stagnated recovery don't.

So my questions to the community are:

Does it sound as though I have B-12 deficiency?

What tests should I insist on to find out if I do have B-12 deficiency?

If not B-12 or B-12 alone, what other conditions could it also be?

Also, I'd like to offer a $500 bounty / gift for critical information leading to my recovery. Thank you greatly for reading all this and for your input.

[Jcwg]

Yes it sounds very much like b12 deficiency, I think your only option is to buy b12 privately, there are many experts that will answer your question on here, many or should I say most of us get little or no help from our GP, the fact you have been taking supplements means your blood test will do nothing to persuade your Dr you need b12. You also need to have your folic acid, iron and prob vit d checked. Sorry can't explain in more detail but I'm fairly new to all this. Good luck.

[snakely in reply to Jcwg]

What's the relationship between Vitamin D and B-12? I have been mildly deficient in D in recent tests, but it wasn't clear to me how it would affect my symptoms or the B-12.

Last time I had my iron checked, it seems to have been fine: 99 out of a range of 40 - 155.

Been trying folic acid supplements recently, and after a couple of weeks, I haven't seen any benefit from it.

[Gambit62 Administrator]

Symptoms of B12 have a high overlap with other problems and unfortunately, it is possible to have more than one cause. MS is another possibility and there was a study that showed that significant numbers of MS sufferers responded well to B12 treatment (I am not aware of any suspicions that the response was related to misdiagnosis but it does genuinely appear that some forms of MS respond well to B12 treatment.

In terms of getting an idea of the full range of possible confusions I'd suggest looking at 'Could it be B12?' by Sally Pacholok and others.

PA is only one possible cause of B12 deficiency. The tests for PA aren't that accurate either so haven't necessarily ruled that out as a cause.

Unfortunately there isn't a good test and the fact that you have started supplementing means that it is not really going to be possible to establish for sure that you have a B12 deficiency unless you stopped taking B12 for about 6 months and I'm pretty sure you won't want to do that - know I wouldn't ... and even then, as above, there isn't a test that is going to say one way or another - just that a combination or results for B12 (serum or active), high MMA, high Homocysteine and results for B9 (folate) will provide strong evidence for a conclusion that you are B12 deficient.

MMA and Homocysteine are waste products that build up if B12 (and B9) aren't available to support the processes that break them down.

UK guidance, because there isn't a gold standard test, is to treat on the basis of symptoms (though GPs are woefully unaware of that at the moment)

In terms of supplementing there are different forms of cobalamin. Cyanocobalamin actually has to go through several steps before it has been fully metabolised and the body can use it. Hydroxocobalamin (the form used in UK and most of Europe) is one step less, and methylcobalamin is even closer still. There is another form but it isn't very stable.

I'm not sure what FDA rules are in the US and how that might affect trying to get hold of another form of cobalamin and see if that takes you any further. Methylcobalamin would probably be your best bet - other advantages are that it seems to promote remylenisation of nerve cells better and it is also able to cross the brain-blood barrier so may give you a better chance with psychological symptoms.

It may also be that you need more cobalamin than you are actually giving yourself ... but a caveat on cyanocobalamin as there are some concerns about potential for cyanide poisoning - so I'd recommend trying to get hold of another form. You can certainly source methylcobalamin sub-lingual tabs, patches, and nasal sprays from the UK. I personally found that nasal spray (hydroxocobalamin mainly) has helped me but I need to take 3x the dose recommended.

[snakely in reply to Gambit62]

Thanks for the reply--lots to think about.

I'm taking another look at MS and you're right about the overlap of symptoms. However, I'm getting hung up on two things about MS that don't sound like what I'm experiencing. One being that shortness of breath (or "the sighs" as the PA website aptly put it) doesn't seem to be a common symptom. Secondly, the relapse-remission cycle that seems to be a major part of MS is not something I get. Also, I seem to recall a neurologist saying about a year ago that my symptoms didn't feel like MS to him. So, I'm not so sure about this as a diagnosis, but it may be worth getting checked out eventually.

That's about what I expected as far as tests go. I'll push harder for MMA, homocysteine, and folate to be tested next time I see a doctor. When I asked last time about MMA, the doctor just gave me some spiel about he only uses that test when blah blah blah, and I didn't think I could change his mind.

I tried taking methylcobalamin 5mg sublinguals a few months back but it just seemed to give me a rolling headache for the entire time I was taking it. I've had the best response to cyano at 2mg a day, but wondering if even more would help. At "3x" the dose, how much hydroxo is that?

I read somewhere that 2mg per day is the recommended loading dose for tablets with 1mg for maintenance. But if I drop it down to 1mg, my symptoms come back with a vengeance.

[Gambit62 Administrator in reply to snakely]

the spray recommends 0.5-1mg a day (1-2 squirts) - I find 2.5-3mg a day is what I need to keep me going.

[Sukiwarrior in reply to Gambit62]

Hi Gambit,

I have ordered the Better You B 12 spray as recommended by Martyn. It us hopefully in the post to me. Should I spray in nose or under the tongue?

Bee.

[Gambit62 Administrator in reply to Sukiwarrior]

Not an expert but think the Better You Spray comes as a sublingual not as a nasal - ie the fitting on the top is for sublingual rather than nasal use. Should be obvious when it arrives.

[Poppet11]

Several issues probably deserve further discussion.

Firstly, relating to the oral medication. I was told right at the start of treatment that oral medication would only work for a limited period of time - although it was being highly successful for me then. I then moved on to jabs - but when I tried the same oral meds a couple of years later they didn't work at all. I think this has something to do with the way passive diffusion works. At the start my cells were empty of b12 - there was no resistence to the oral b12 entering. But a few years down the line my cells had b12 and the concentration gradient necessary for the oral b12 to enter cells could not be built up.

This is pure assumption on my part, but it's the only reason I can think that the oral tabs no longer performed as expected.

Secondly, you need to find a form of injectible b12 which suits you. Some people swear by cyano, others hydroxo and others methyl. Cyano doesn't work for me and I've never tried hydroxo.

Thirdly, we are back to the, possible, misconception that all b12 symptoms are reversible. For many people they are not. Many people sustain permanent damage to one degree or another and they will never return to the 100% that they were before they were ill. However in your case I wouldn't have thought you had been taking enough b12 in any form for any period of time to enable discovery of permanent injury. In your position I would be looking at the two possiblities above and others have given further options as to self medicating.

[snakely in reply to Poppet11]

Very interesting. So how much of this first point is just a theory of yours? I haven't seen anything that said oral tablets lose their efficacy over time, but I'd be interested it reading more about it.

When I started the injectable cyano, I stopped the oral just to see what would happen. After a week, my symptoms rushed back until I started the oral again. This has baffled the hell out of me since they were both cyanocobalamin.

Yes, the degree of recovery was something else I was concerned about. A lot of articles I read made it seem that full recovery was almost always possible within 6 months with the right treatment in all but the most severe of cases, i.e. advanced age or extended period without treatment. I'm guessing that's not the reality, though. However, I feel like at my age after only 4 years of progression that I should be able to recover more than the 30% I'm at now.

[Poppet11 in reply to snakely]

The original 'theory' about the oral tabs didn't come from me it came from an expert - but as I say for at least one month the things were brilliant and it wasn't the reason I came off them.

I later learned about how passive diffusion actually works, and, since I tried the exact same tablets again only this year, to discover they had little or no effect, I began to look into passive diffusion a little deeper. It was simply (or a simple) answer I came up with. That my cells had little or no b12 in them at the start so the amount of b12 I was taking didn't require to be, if you like, as deep, to get into the cells.

I haven't seen any studies reporting they become less effective either - but then most of the studies I've seen only focus on how oral affects blood levels (who cares!) and I don't know if they assess patients physical responses in the months and years to come.

I can't give you a scientific answer to the cyano jabs v cyano tabs. There will be one but I don't know it. I know the cyano jabs don't work for me...

You need to be taking the correct amount of b12 (and the correct amount is what reverses your symptoms not what is successful for anyone else) for at least a year before you will be able to begin to ascertain what, if any symptoms, you will be stuck with. I would say it takes at least 3 years to top up the system fully and that is really when maintenance doses should kick in!

[Poppet11 in reply to Poppet11]

I'm going to add to this as well because I haven't done my 'rollercoaster' speech for some time.

I think this depends on each patient, but what I found (and most certainly for the first year) was that the progession wasn't linear. It wasn't simply a smooth consistent uphill improvement.

In fact it was awful.

What would happen was that I would feel better, in fact I would be on a high, for about 4 days (physically I was flattened after 1 but I could just about keep going) and then I would plummet both emotionally and physically into the bowels of the earth for about 2 or 3 days. Then, Whoosh! I'd be back up. The down days were truly appalling. I'd think the b12 wasn't working, I couldn't understand it, I was completely negative. But I knew this was an illness which affected the central nervous system. I knew such things fluctuated and I hung on in there.

Over the first year (and it definitely was the first year) The highs became less high and more prolonged and the lows became less low and more spaced. That phase had it's plus and minus points. The minus I've already mentioned, the big plus was that I could, literally, measure and maintain how I was going to feel on a certain day. So, if I needed to go on a journey on a Wednesday, I would have a jab on Sunday, Monday, Tuesday and Wednesday to make sure I could get through the day. Usually I had jabs every other day. In short I could, to a certain extent, control the situation. After the first year I discovered I couldn't. I take the stuff, I maintain my condition wherever possible. But the titratable factor is no longer there. A disappointment.

[Poppet11 in reply to snakely]

I have read good stuff about the nasal spray too from several quarters - but I've never tried it myself.

Trying to get a firm diagnosis once you begin treatment is very difficult. It pulls all your levels into the normal range. It also affects the IF antibody test if you have the test done within a certain period after treatment (some say 2 days and others say 2 weeks!) but that is the test manufacturers statement.

You are in the US, yes?

You could try having the test for acholorhydria. Only I can't remember what it is called. It begins with H (I think)

It's not available in Europe.

It works like this - many, but possibly not all b12 deficient patients (if not for dietary, infestation or surgical reasons) usually have low stomach acid - a high PH or alkaline stomach. One of the symptoms can be indigestion (yes, low or high acid can cause it)

If you have alkaline stomach acid then the b12 cannot be liberated from food and thus you have a malabsorption and b12 problem.

You possibly have other malabsorption problems to boot.

It may or may not convince your doc to help you - but you would know - and, like many of us, at least you would feel more confident about what you are dealing with?

Heidelberg test! I remembered!

[snakely in reply to Poppet11]

Yes, looks like I screwed the pooch by taking the tablets before getting the tests done. I'd never heard of this stomach acid link before--looks very interesting. Will keep it in mind.

Are MMA and homocysteine as unhelpful as serum b12 is in diagnosis after treatment has begun?

[Poppet11 in reply to snakely]

Homocysteine will come down with either b12 or folate treatment and I know one of the manufacturers of the MMA test says not to have the test done within a certain period of time after treatment but I can't remember what.

Bottom line is that to get any accurate test results (and none of them are definitive anyway) you have to stop treatment and in some cases for a prolonged period until the b12 clears the system.

I've mentioned this before on the boards but I guess it boils down to who you want to convince: yourself or your doctor - or maybe both.

I think many people, myself included, fall into the trap of thinking once we start treatment (particularly if we got a good start) then everything will be hunky dory. For many, it is not. Some people stick with the b12 (and learn more about why they have that in the first place and what else can be affected) and some people want the validity of a 'diagnosis' for possibly other conditions.

I can see why this happens and it is only common sense to rule out other things. But you do end up having to trust yourself and sometimes more than the doctors.

One thing I will say though - about the MS and B12: Back in the day, at least prior to treatment, PA (as anyone with this condition was known as having) DID have remissions and relapses. There is much mention of this happening. I'm not quite sure from the writings if this always occured prior to a treatment being available or if it continued afterwards but I am presuming that if it goes untreated or undertreated, then there will be the same factor. It may well be that the same situation occurs even under a good treatment regimen.

[aliveandwell]

Interesting how you had highs and lows. Maybe you could try supplementing evenly throughout the day. I just read a post somewhere about how in Holland someone recommended taking 30000 a day and so this person who wrote the post took 6 x 5000mcg throughout the day sublingual tablets. Which are absorbed into the mouth directly. The Methycobalamin form. Yarrow is a good brand I hear.

Have a search for Kevin Byrne dissertation because that was what he had read.

A good book on B!2 is Could it be B12?

Yes the symptoms that you list are those I read in this book. However, some of them are also those for iron deficiency like shortness of breath, muscle soreness, fatigue, and some also could be for Magnesium Deficiency, palpatations, migranes, (The Magnesium Miracle book)

So I would strongly recommend that you get these tested also - B12, Iron stores, Magnesium RBC. And that you find yourself a really good doctor, if you don't have one already who is a professional expert, who would be able to know what to look for. And a good nutritional therapist.

All the best. Hope that you get to give your bounty offer.

[shevie]

have you been tested for thyroid problems, like hashimotos? They can sometimes manifest together. I do hope you get yourself sorted.