Trying to help my brother, he has M.S and suspected Pernicious Anaemia

My brother who also has M.S had his first self injected Methyl b12 yesterday and didn't sleep a wink all night. he also took a soluble B complex and vit D3 plus K2 I don't think he wants any more injections he said, 'it will kill me'. He is so poorly I'm trying to help him.

He had 5 loading doses of Hydroxy some weeks ago but couldn't sleep then either followed by a water infection and antibiotics . He is getting weaker and weaker. His doctor was horrible. He had a blood test last week because I spoke to the doctor and said that something else is going on...they put everything down to the M.S and don't acknowledge the PA which our Dad had and the b12 was down to 143 years ago but still they didn't test for PA or help him then. I'm beginning to wonder if years of maximum doses of paracetamol every day have damaged his liver or kidneys. He takes two just to be able to get dressed, he said it helps him.

Lovely retired Dr C said he needs to have lots of b12 injections to get better but my brother can't seem to cope with them. I am at a loss what to try next....I hoped he would power through lots of doses to start to heal but it's making him feel so rotten and the lack of any sleep is killing.

Maybe if the blood tests show something the Doctor will help him but my confidence with them is low....perhaps a shot liver is why he can't take the jabs? ( he doesn't drink or smoke) his Doc is testing for the Paracetamol damage this blood test because we mentioned the Paracetamol usage, I don't know what else, the nurse left his notes at the surgery so she doesn't know what the blood test is for! It's time my brother had some good luck not bad!

M 😳

27 Replies

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  • Is it just the not sleeping or does he have more side-effects?

    What did Dr C say about that?

    Sometimes when things like this happen it's a good idea to stop everything for a week or so (all supps, not meds) and ee what happens.

    Paracetamol is bad for the liver yes, but doesn't affect everyone the same. Blood results will give more info, but it might be worth talking to the GP/specialist about an alternative painmed.

    Sublinguals he tried already before, right?

  • We did stop everything as even folic acid seem to keep him awake. He's tried sublinguals. No many symtoms have got a lot worse...

    My brother has said that many times in the last 3 months he felt like he was about to actually die that moment as he feels so ill. In pain in his limbs, his back, his head, as if he has bad flu, the list goes on. I'm so sorry for him and he's younger than me. He is all withered down one side, his arm, hand and leg don't work. He can stagger only a few paces now, touching walls and furniture, too weak to go out, he is in prison in a flat on his own...the mobility scooter stuck in the tiny kitchen, not going out on it as too ill.

    After loading doses of 5 ( he missed last one as so ill) at the surgery against his own Drs wishes who just gave it to shut us up, he was very poorly .

    Dr. C said the anxiety and the wakefulness was that the cells were being awakened after being severely neglected for twenty years. And homocysteine or byproducts were doing this.

    He said John can go at his own pace with this if he can only take it once a week which was what John said he would try after the bad reaction to loading. I can't see the insomnia will be gone after one week as it took ages last time to get to sleep any hours at night or day?

    I hope this latest blood tests gives us some answers.

    M.

  • How long did he stop taking all supplements? And did that make any difference?

    Did he also try not to take the B-complex or anything else, just B12 alone? And yes, agreed on the one injection a week. Or try half an injection twice a week.

    All symptoms got so much worse after starting B12 or was that already happening before?

  • Is the homocysteine a guess, or has he had a blood test for it?

    It may be worth trying trimethylglycine (TMG or Betaine - available from Amazon and found in lots of foods). This provides an alternative route for the removal of homocysteine if the normal route (mediated by B12 and folate) isn't working efficiently.

    atvb.ahajournals.org/conten...

  • As far as I can tell he rarely took any supplements, folic acid when he was loading B12 which was over a few weeks period, vit d3 occasionally plus k2, one b complex yesterday. So I think mainly painkillers as always and recently, plus antibiotics, (water infection) plus 2 teeth out (no gas) and only ibuprofen for that pain.

    The homocysteine was Dr C's explanation to J on the phone as J felt so hyper and anxious and not able to sleep. Not sure that has ever been measured in his blood as the GP is so rattled and not interested in helping.

    I may try to get some of that TMG for J. Thank you for that.

    M

  • I've been thinking about the painkillers used Mary.

    My sister's severe B12 deficiency only came to light after many years when she became very much worse following dental appointments and eventually collapsed (no gas).

    I then recalled an incident a few years before that when she had passed out after taking Ibuprofen and the doctor had been called. He could find no reason for it at the time!

    You may find the following interesting - page 11. This may not particularly apply to your brother but one wonders if painkillers are working against the b12 being as effective as it could be?

    ncbi.nlm.nih.gov/pmc/articl...

  • You are brilliant, thank you Polaris I am going to follow your advice. It's amazing what I can learn from this site.

    M

  • Thank you Mary😊 I do hope your brother has a better response to the B12 - as others have found, symptoms can feel worse before things start improving but it is important to eventually have sufficient to make a good recovery.

    Very best wishes to you both

  • Did he take probiotics after the antibiotics? Might help..

    He could try half an injection, worth a shot.

    All symptoms got so much worse after starting B12 or was that already happening before?

  • He was poorly before but not with the insomnia and anxiety, that came with the b12. He found it very hard to sleep just taking folic acid way before trying any b complex or b12 shots. He seems to have a very sensitive brain to everything.

    The probiotics are a good idea and the TMG Betaine but I will find it difficult to get him to try any more things I think...The Betaine may well help with the methylation and sounds a good idea.

    Thank you.

    M

  • Betaine might also give some increase, it did for me (but I had high homocysteine, even with B12) . Folic acid might be that he's among the 2 or 3% that can't tolerate it (I can't (makes my head go weird ;) ) but the active folate in low doses I can take) Maybe just try and first get the right dose of B12 for him that's tolerable, and go from there?

  • How is your bro about food? Eating lots of spinach will supply lots of TMG and folates. When cooking I often add a handful of baby spinach to stews etc. at the last moment. It soon shrinks down and gives a nice splash of colour.

  • I'm so sorry you and your brother are going through this. Our family have had similar problems getting correct treatment for my sister for the last two years.

    You are right to question taking folic acid before treatment with vitamin B12. These links might help clarify:

    gbhealthwatch.com/Nutri...

    Folic acid should never be taken while B12 is very low as it gets 'trapped', cannot be used, and could make neurological symptoms worse."

    "High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood." :

    .............

    cmim.org/pdf2014/funcion.ph... :

    "If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.

    In patients with isolated vitamin B12 deficiency and anaemia, additional folic acid is recommended until vitamin B12 is replete to prevent subsequent folate deficiency after replenishment of B12 stores."

    ...............

    Sally Pacholok and various specialists also talk about the dangers of folic acid as well as masking B12 deficiency in this film.

    Haemotologist's quote:

    "If you treat someone with B 12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."

  • Thanks Polaris you are so right, it all makes sense now! I have seen this film when I started looking into this but other info since has stressed how all the B's have to work together with the b12 etc. Looking back at his records for some reason the dr was giving him only folic acid regularly years ago so this must have masked things and made his neurological problems worse. So much to take on board I will take info and see him now, give him some hope we now know what to do. He didn't sleep at all last night, poor thing.

    I have to persuade him that we need to get on with the b12 jabs. It's the sleep problem that is putting him off.

    I think Sally P's reasearch and Dr. Chandy are right and M.S may well be really B12 deficiency.

    Thank you so much 😊 X

  • So hard when you can't get a good night's sleep and B12 is supposed to help with this but many have to make sure they don't take it in the evening. Magnesium citrate in powder form seems to help me but you have to start gently with this as it can cause diarrhoea.

    I've always wondered about the link between MS and B12 def. too Mary, especially after seeing a video on Dr Terry Wahl's site. She was vegetarian but cured her severe MS with a paleo type diet.

  • Thanks Polaris yes I have got him magnesium spray for his legs in the past, he said it doesn't help... I pointed out he has to throw everything at this and that it's essential and may help his restless legs too.

    We watched this film too in the past but my brother looked dumbfounded by the amount if food she was eating , all those huge quantities of veg.... said he couldn't do it. I will keep trying.

    Thanks to all of you who have brilliant info, so knowledgeable.

    Mary 😀

  • I know how he feels about the amount of food ! I thought the same 😄

  • He is not good with spinach, I keep trying to encourage him to have some. I will make some Dahl with it added and take it to him, he likes Dahl.

    Thank you great idea!

    M

  • What time of day did your brother inject B12? I find that if I inject any later than 1-2pm, my sleep is (even) more disturbed than usual.

    Trimethylglycine (TMG) to lower homocysteine is readily available from Amazon or health food shops. I take the Swanson brand. Also, consider N-acetyl cysteine (NAC) to help counteract the effects of paracetamol, though it may be a little late in your brother's case - his blood test result may give a better idea when it comes through. (I took NAC when I discovered I was short of cellular glutathione (GSH); NAC is a precursor to GSH, and better to take because GSH doesn't survive digestion intact.)

  • Do you also need to supplement with the other precursors of GSH - glycine and glutamic acid?

  • Probably! Homemade mixed-source bone broth is an excellent source of these, but not everyone wants the bother of making this regularly, though I do. I concentrated on the NAC because I thought it might help chronic sinus and chest congestion, which it did. But that's another story.

  • Forgot to point out that NAC specifically is used in paracetamol overdose, and sometimes in chronic over-use.

  • Yes, that's because NAC can also conjugate the nasty metabolite of paracetamol (NAQPI??).

  • Thank you for this Hillwoman. Really interesting that NAC is a precursor to GSH and counteracts the effects of paracetamol...

    I went to look at the page I'd marked in Dr Kharrizian's book on thyroid disease 🙂 - he writes that neurodegenerative disorders have been associated with change in glutathione and antioxidant status; that, since the tissues of the nervous system are highly oxygenated and composed of unsaturated fatty acids, they're prone to lipid peroxidation in instances of GSH and SOD depletion. He goes on to say that, as glutathione and SOD quench the the lipid peroxidation, "lt's use in chronic neurological disorders must be considered " - he underlines the last sentence !

    Also that, 'the status of glutathione is considered the single most accurate indicator of the health of the cell".

  • That's very interesting! I really must read Kharrazian (when I'm feeling less foggy). :-)

  • Yes we have tried the early jabs when he was loading but same problem. I think it's the folic acid and b complex I made him take that's been the problem.....as Polaris pointed out. I'd forgotten that stuff from my first research into all this...so much to learn.

    Thanks for everyone's input and help.

    M 😀

  • There really is so much to remember, and it's more difficult under conditions of stress and illness.

    All the best to you and your brother.

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