Neurological symptoms worsening despite injections every 2-3 days

[oozlumbird]

My GP has prescribed B12 injections on an ongoing basis for me to inject myself at home three times a week, which I've been doing for several months, and I am topping up with B12 from Goldpharma. This seems to be (just) dealing with my slurred speech, which, as a teacher, was a great worry.

But my palpitations and breathlessness are getting worse, my hands and feet (particularly three fingers and three toes on the right hand/foot) are now almost always numb, and my arms and legs regularly go to sleep. I have permanent burning pain in calves (again, mainly on the right), which seems to be extending up my leg. Am pretty worried about this now. Does anyone have any views on what's happening? I have had a brain MRI, which was clear, and the neurologist, having no other explanation (and having said that there was no indication of subacute combined degeneration) said that if the B12 was working then the injections should continue. The GP has agreed to refer me to a neurometabolic clinic, but am I barking up the wrong tree?

On a side note, since in my view I appear to have the symptoms of subacute combined degeneration, and only my brain was scanned, can anyone clarify whether this means it has been ruled out altogether, or just whether it was too early to tell, or the wrong part was scanned (i.e, wouldn't you need to scan the spinal cord?). The tests seemed incredibly low-tech, e.g., walking toe to toe and checking reflexes – but surely the damage would have to be pretty far gone and severe for these to be affected. Do I have to wait until I can no longer walk for it to be diagnosed?

It's not that I don't trust the neurologist – he is a well regarded professor at a top teaching hospital, who has written a paper on the neurological aspects of B12 deficiency – but something doesn't add up here, and to get 'I dunno' as the answer is very unsatisfying. I don't have a diagnosis of anything (though it seems very likely it's pernicious anaemia), as my bloods were 'normal' (I know, I know...). Homocysteine and MMA were also normal, but were only checked after lots of B12 supplementation.

I have also had Graves' disease in the past. Could this be related to that instead? Could it be something completely unrelated to either?

Thanks!

[Secondchance]

Subacute cord degeneration classically shows up on the spinal cord but there is no gold standard test. A brain scan will not necessarily show a problem but B12 deficiency can cause demyelination which can look like MS. If it was me I would continue with B12 as it won't cause harm but also pursue other possible reasons as someone else here discovered another issue that they had attributed to B12 deficit initially but it later turned out to be cardiac. Also ensure your folate level is sufficient. You need it to help B12 work. Also someone once told me B vitamins work as a complex so I take a B complex at injection time. Just don't take too much pyridoxine as it can cause neuro symptoms at high doses- I think 100 mg. I take 50mg a couple of times a month as part of B50 complex. Good luck!

[Hillwoman in reply to Secondchance]

This is very good advice. I found some of my neuro problems were getting worse even with frequent treatment so I added in a good B complex and the problems resolved. I also needed to supplement with magnesium and potassium.

However, recently some neuro symptoms like numb feet, poor balance, foggy brain etc. etc. have been worsening despite this measure. Like you, oozlumbird , I don't know what is causing it either. I suppose I ought to get it investigated, but I doubt I would get far.

[deniseinmilden]

Hi!

Great to hear from you - I've been wondering how you were!

What are you taking in the way of cofactors?

Your symptoms, etc have followed a similar pattern to mine and so I wonder if there is any other correlation? I'll list the things I need and suggest you come back to me if you want any info about any of it.

Every day, for my body to function I must have:

1.5 mg in 1ml hydroxocobalamin injection

6 x 800 mcg methylfolate tablets

1 - 2 teaspoons of Lo-Salt (potassium chloride and sodium chloride)

1/2 - 1 teaspoon of magnesium chloride (or magnesium sulphate)

2 x multivitamin and mineral tablets

1 x 25 mg iron bisglysinate capsule

I also have to make sure I get a wide range of amino acids from my diet, which seems to have to include pork and fish.

I'm not perfect but was able to drive 130+ miles to a meeting where we were deciding national policy on various topics and back yesterday and I'm working long hours again today without a major problem. Exactly a year ago I started SI because I couldn't walk or talk.

Good luck! xx

[Hillwoman in reply to deniseinmilden]

Gosh, you've come a really long way! Good to know this can happen for some people.

[fbirder]

I would think that a brain MRI looking for causes of your symptoms would concentrate for on the hindbrain and cerebellum and would, therefore, also include the top of the spinal cord.

Like you I have worsening neuropathy, despite having 1000ug of B12 IM every week. I also have some absent reflexes (which is why the neurologist tests them) and a positive Romberg's test (stand with feet together, close eyes, fall over). These tests are simple, but they can say a lot to the trained mind.

The neurologist says that the neuropathy is 'not the sort one normally sees with diabetes and is a little atypical for B12 deficiency'. He says that my hyper-dosing of B12, along with low values for MMA and homocysteine means it's not B12 related neuropathy.

He believes that I've developed an autoimmune problem with either the nerves or the blood supply to the nerves (I've also recently developed Raynaud's syndrome). He ran a load of antibody tests to see if he could find anything unusual.

I do have Neuroendocrine Tumours (NETs - or gastric carcinoid tumours). caused by hypergastrinaemia from my Autoimmune Metaplastic Gastric Atrophy (which causes the PA). He believes that these may have kicked my immune system in the wrong direction to cause PA, diabetes, Raynaud's and neuropathy all to pop up in 12 months.

I'm seeing him again in three weeks when I find out the results of the tests and probably have some nerve conduction tests. I'll also be asking if it's worth having an MRI to look for physical damage.

In our cases it makes sense to test for MMA and homocysteine levels while taking the normal amount of supplements. If I'd stopped taking B12 for 4 months then my PA would have caused high levels of them both. But we wanted to check to see if it was a functional deficiency (high blood levels, but it's not getting to the right places in the cells to do a proper job). If it were, then MMA and/or homocysteine would have been high despite supplementation with B12. They weren't so it's not a functional deficiency.

So we're both in a similar position - problems with neuropathy with no explanation. I'll let you know how I get on in August.

[Gambit62 Administrator]

I don't think Graves is actually something that you recover from - though guess the effects may be more obvious at some times than other.

Most likely explanation is that there is more than one thing going on and you just haven't got to the bottom of everything.

Personally, I would feel rather encouraged to have a doctor who had the self confidence to admit that he didn't know what was going on - that is very different from saying that he isn't going to carry on looking and thinking about possibilities.

Really hope that you do get to the bottom of what is going on.

[JanD236 in reply to Gambit62]

I had Graves 11 years ago and think I've recovered from it. I had 18 months on carbimazole and no real problems since. I have annual blood tests and for a few years my thyroid seemed to be struggling and veering towards underactive (tsh up to 3.3, T4 11-13). Strangely (otr maybe not?) since having PA diagnosed and B12 injections my tsh has gone down to 2.5 so I assume my thyroid is happier.

[_tracy_]

SI = self inject

[deniseinmilden in reply to _tracy_]

Sorry!

[addie18]

Have you had an EMG, oozlumbird? Based on everything I have read, a good doctor would order an EMG with symptoms like this just to rule out the possibility of unrelated motor neuron disorders that might benefit from other kinds of treatment besides just b12.

[Secondchance]

Sorry just noticed this. It is another B vitamin in B complex. Only B12 is in sublingual B12 as far as I know.