M.S and Pernicous Anaemia... Low B12?

Im a newbie and appreciate any advice please.... My two brothers both have M.S. One has lots of symptoms that look like Pernicious Anemia too which our Father had. His last B12 test looked good because he was spraying a supplement of B12 under the tongue and they said he had plenty. ( I haven't seen the paperwork) I've asked him to stop that, we will wait a few weeks and try to get him tested again. I don't hold out much hope for a doctor to perform all the correct tests and treat him if I'm right in my investigations.

I'm reading Sally Pacholok's book at the present. His limbs don't work on one half of his body and are withered now, he has difficulty using the hand on that side and I was wondering if he could try B12 patches as he couldn't possibly inject himself, does anyone know if they are any good. He is talking of going into a wheelchair now and is very weak and poorly... I haven't listed all his symptoms as I know you are all familiar with them.

I am going into the doctors with him next time, using a wheelchair as he's too weak to walk up the steps/ramp on 31st Aug, wish me luck to get the right tests....I know which to ask for thanks to this site and Sally's book. I'm hoping the B12 patches will help him if I can't get the correct help.

Thanking you,

Mary

17 Replies

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  • Unfortunately stopping the spray for a couple of weeks won't give a accurate result. The level will still be too high. They could ask their specialist for trial treatment with injections, there is some literature to back that up for MS patients. I understand he can't inject himself but it can be done by someone else. I don't know the 'rules' in the UK but in Holland lots of partners, parents, family, friends inject the person with B12def. But to start it should be just like normal, given by the surgery.

    Unfortunatly I never got round to translating my piece on MS and B12, but the references are available online if you use google (google scholar) stichtingb12tekort.nl/vitam...

    Because you father had PA, he (or both brothers) should be tested for PA. That can be done now, while on supplements. And should have been done already.

    If sublinguals are not an option, the first option, after injections IMHO is the nasal spray, (then sublinguals) then sprays and patches.

  • Thanks for your reply. Sadly my brother is living on his own, I work half the week and doubt I could inject him as squeamish. I fully expect to get nowhere at the doctors judging by the treatment he has had so far from everyone.

    Guillaine Belanger advises patches are the best, he is an alternative health expert but others don't rate them?

    I'm hoping the test for Pernicious anaemia will be carried out and show he can be treated by the NHS and a nurse.....Dad had to wait weeks with all the symptoms between shots though....

    So sad for my brothers.

    Thanks for any help.

    Mary

  • nasal is quite an efficient form of delivery - I use it with my mother - and is going to be more efficient at getting the B12 into your bloodstream than skin patches - though they do work for people.

    As the nasal spray is just a vitamin supplement you can source it in the UK though I've not come across it in healthfood shops but you can source it on line - I get mine from a company called detox-people. Yuliv is probably the easiest to use but they do also do a range of nasal drops which have their advantages but are suspended in sesame oil rather than saline.

    Unfortunately there is a significant overlap between MS and B12 Deficiency symptoms. Add in to the mix that the tests for PA as the cause of a B12 deficiency aren't as accurate as they could be then things can get very difficult. There is also quite a lot of research showing that significant numbers of MS patients actually respond very well to treatment with high dose B12 ... and unlikely that that is just because of misdiagnosis.

  • It would be of course easiest and best if he gets treatment thorugh NHS and a nurse can come and give him the injections. Both nasal sprays you'd have to order online, but both are good and not too hard to get. patches work for some, but have seen to many in which it doesn't. Scientifically nasal spray makes the most sense (after injections)

    Hope both your brothers can get tested and treated. Goodluck and you could always refer to the articles I gave in the linnk, maybe it helps, you never know.

  • Patches did nothing for me.

    It was the same when I was trying to give up smoking. Nicotine patches were useless - I could never light them.

  • Ha ha, pretty funny, fbirder! :-)

  • Have your brothers received definitive MS diagnosis? The only way to do that is from a spinal tap. I'm asking because my neuro symptoms from PA were so bad, and so closely resembled MS that this was my original diagnosis. My b12, MMA, IF, and Homosistyne results actually came in while I was at the Neurologist getting the tap done. He officially diagnosed me with PA on the spot, but didn't remove the MS diagnosis until my spinal tap results came back. The 2 diseases share many symptoms, but need different treatments. Please ask your brothers to be sure they are diagnosed correctly. Good luck !

  • Thank you for your reply. As far as I am aware John has had an MRI which showed a lesion on the brain. He has back trouble too which was scanned and showed problem discs. I don't know what they have both had tested as their wives were there at that stage not me.

    I piece together what I can from them. The Other brother is on aggressive Tysarbrin infusions....he walks like a Parkinson's victim.

    I don't know if they had the full b12 checks when all this started 20 years ago. I'm going to try to get more info in the doctors app on 31st Aug.

    Our dad had P.A , Rheumatoid Arthritis, lung cancer and I think undiagnosed under active thyroid, which I have. My poor daughter inherited the R.A through Dad and me.

    This whole thing is a sad maze to try to get through.

    Thanks,

    Mary

  • So sorry to read of the problems within your family. There is a video of the PAS Conference a little while ago where the speaker Prof Smith talks about the brain shrinkage when B12 is low. Lesions too .....

    youtube.com/watch?feature=p...

    He starts to speak around 4 minutes into the video.

    My B12 bumped along at around 300 for years - not good - and I live with the consequences. Also VitD levels are important for MS sufferers and other chronic conditions. MS is more common the further we move away from the equator - and of course the sun :-)

    Hope you find some answers.

  • Thanks for your help. I've listened to all the films from that conference now. Just hope I can talk well for my brother at the Docs.

    Mary

  • If the GP is not co-operative and prepared to work as a team - you could consider having blood tests done privately. I can send you the link if you like .....

  • I've got to wait until our appointment on 31st but will have a link if he doesn't help John. He can barely make it to the loo and now more disaster he had a burglary when he was asleep last night and they've taken everything. I didn't think it could get worse for my darling brother. No house or mob insurance.... Now no laptops, computers, watches or mobile phone and another year on the contract to pay. His druggy cleaners mate snuck in...some people are such low life's. Everything he had, he didn't have much. Can't get the £1200 money they took from bank because he trusted her with the pin to get his local shopping. I didn't know he did that, I get his main shopping. She was fleecing him for her habit and I didn't know. He thought she liked chatting to him!

    God help us.

    Mary

  • So sad reading your post. How can such terrible things happen. I hope you have some success with the GP.

    Blue Horizon will send test kits to the home and they can be done by a finger prick. They have a website.

    Please let us know how things go ....

  • Good news they have arrested the cleaner/helper and her male pal. Police have retrieved two of his little iPads from the male accomplice and as that is how he watches tv in bed when the chair is too uncomfortable it's great news. The most expensive laptop missing still but well done to the police. He can't have them back just yet but that's cheered him up. The car had to be taken away on a low loader because thieves had both sets of keys. So he is trapped even more. I will get him tomorrow and look after him, not back to work until Thursday luckily. What some vile people, I can't wait to see that doctor and I'm taking no prisoners !

  • Hang in there :-)

  • Hi Marymary7,

    I have nothing more to add to all the excellent advice you've received, but want to let you know that you have my sympathy. I have brothers and it would be so sad to have to watch them suffer. I sincerely hope that your brothers get tested for PA and get the B12 they need!

    Since Gambit62 mentioned that B12 is good for MS, it's a crying shame that they couldn't both be given B12 injections for that reason alone. Best wishes and please keep us posted! :-)

  • Thanks for your good wishes. I just hope I can get somewhere with this when we are seeing the Doctor....it's not going to be easy.

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