Husband suffering badly re B12 deficiency advice needed

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Hi, Last June 2007 my husband was diagnosed with B12 deficiency and went throught the 6 injections plus every 3 months. He suffers with poor memory, confusion, weakness and depression. Over the last 2 weeks he now has pains in his hips, thighs and lower back. We have been to Drs and hospital with no explanation of where the pain is from. He also is extremely weak and his muscles seem to have withered. Has anybody experienced these problems and if so advice please on how to cope. The Drs don't seem interested if you can please help.

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  • Posted

    Hi there JD

    So sorry to hear about your husband.

    Below are 2 links the first link will show you many threads written by people who are or have suffered similar problems as you husband.

    The 2nd link will take you to the NHS Direct Wesbite giving more details on B12 Deficiency.

    All the best & here's hoping you find the answers you are looking for.

    Melbi x

    Link 1: http://experience.patient.co.uk/search.php

    Link 2: http://www.nhsdirect.nhs.uk/articles/article.aspx?articleId=42&sectionId=10

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  • Posted

    [quote:8b49633a24=\"J D\"]Hi, Last June 2007 my husband was diagnosed with B12 deficiency and went throught the 6 injections plus every 3 months. He suffers with poor memory, confusion, weakness and depression. Over the last 2 weeks he now has pains in his hips, thighs and lower back. We have been to Drs and hospital with no explanation of where the pain is from. He also is extremely weak and his muscles seem to have withered. Has anybody experienced these problems and if so advice please on how to cope. The Drs don't seem interested if you can please help.[/quote:8b49633a24]

    Hi JD

    Sorry about the other message - I haven't finished my 2nd coffee yet - my excuse :shock: and sticking to it! :oops:

    Here are a few symptoms for B12 Deficiency if it has been left for too long...

    Tingling of the fingers and toes,

    Muscle weakness,

    Staggering,

    Tenderness in the calves, and

    Confusion.

    [i:8b49633a24][size=9:8b49633a24](taken from NHS Direct website)[/size:8b49633a24][/i:8b49633a24]

    Melbi x

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  • Posted

    Hi JD,

    I found after 6 years on conventional three monthly B12 jabs (hydroxocobalamin) that I had become terribly weak and feeble, muscle wasting etc. Others in my environment would comment as in are you near your jab due date, my brain was just hazy and it bocomes depressing when you are so removed and unable to take part in the \"normal life\" as it was. It seemed to me that one month out of the three I was just in an anaemic haze, so I asked for two monthly jabs. The answer was no, its in your mind. So I paid to see a heamatologist (not that expensive), she did some tests and told me to take folate and referred me to a neurologist. To keep a long story short he concluded sub acute degeneration of the spinal ord (just nerve damage, caused by not enough B12), and recommended B12 jabs every two months.

    As it stands I did not wait for all those results to come trough (took a year from start to finish), learnt to self jab and bought my own B12 abroiad. I feel 100% better, its put me back into the normal world!

    It may help if you get copies of bloodtests, to see how low his serum B12 is with his current treatment, also checking serum folate etc. It seems from other forums that the three monthly maintenance dosis perscribed is fine for most, but not good at all for others, who seem far better on regular frequent B12 jabs.

    I hope this helps,

    Kind regards,

    md.

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  • Posted

    :D Hi, to Melbi and MD,

    Thank you for your replies. The experiences you describe MD are very interesting. My husband went to the Drs and suggested his problems are B12 related but Dr said not. He has done another blood test on Friday getting results Tuesday or possibly Monday. He is checking for several things re his muscles and told him to excersize his muscles more. He is checking \"metabolic and neurological\" (not sure if this is correct). Also said dependant on blood tests may go to see a specialist neurologist. He has been given a strong pain killer and antiinflammatory tablets! My Hubby's problems have only started since his B12 was discovered to be low and thus has pernecious aneamia. We are not sure that he will be seeing if his B12 is due early with this last blood test as he keeps saying it has gone up but this was after his first set of injections last JJune and it has not been checked since. So it is possible we think that he should have more frequent injections. He is about 3 weeks off his next 3 mths injection. He is feeling very tired and weak and his legs are getting weaker. In his words they won't support my body weight.I will keep you posted on what happens. Thanks again.

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  • Posted

    Hi JD

    I wonder if your doctor ever refers his patients to Patient UK?

    I learnt yesterday evening that our doctor does :shock:

    Apparantly when my daughter went to get her medication changed for her asthma after a spell in hospital earlier this year - our family GP told her to come and read Patient UK for more information on asthma!

    Hi doc :D

    Perhaps you could ask your doctor if he/she does and if not perhaps you could direct him in the right direction.

    Hey! You never know, he might even spend a little time reading patient's personal experiences.

    Good luck with the blood test and hope all goes the right way for your hubby and of course for you too.

    Melbi xxx

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  • Posted

    Hi JD,

    I hope for your husband it will just be a matter of more B12 jabs and or folate tablets. Taking strong pain killer and antiinflammatory tablets can actually reduce his B12 levels even more.

    I can relate to the legs just giving way, remember my legs just feeling like jelly every time I stood up, sunk through them several times and fell intop the cubboard, door posts etc; still have a mark on my face from that.

    No its not funny and, in my case anyway, so easily treated. If only I had known earlier, then perhaps I would not be left with some neurological damage (balance mainly, some reflexes do not work any-more). The neurologist will do tests such as stand with feet together, shut eyes, test reflexes etc, nothing to be frightened about, nothing uncomfortable, just make sure you have best underwear on, clean feet etc.

    I hope your hubby will get seen soon, good luck!

    Kind regards,

    md

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  • Posted

    Hi again Melbi and MD,

    Thanks for replies its good to have your support. Going to Drs this am for results. Hubby feels Dizzy this am perhaps results of pain killers! He had a good day Saturday and a poor day Sunday . Will let you our results later today.

    Thanks again.

    JD

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  • Posted

    Hi again,

    Returned from Drs. Fairly good consultation but nothing specific come from blood test come in so far. Dr puzzled so agreed to give B12 injection today and another on Wed am then return to Drs Friday to see if any improvement. If not will refer to Neurologist. We offered to pay to get in quick and he said no no I will get you in quick. Hoping everything better by end of week but may ask to see neurologist to see if any permanent damage. Hubby very dizzy and faint today nearly fell over at Drs. Speaking very slowly and he says his voice seems strange but not to me just slow speech. He only thought his liver results could be something to look at. hubby also has very slight tingling in his fingers which suggests his B12. His haemaglobin is 12.5 and was 13 in January and before that 14 so it is going down. Dr says not sure why. His B12 is 148 and before treatment it was 66. This doesn t mean anything to us but Dr said it is normal! What is normal? I will get back to you with results of B12 injection at end of week.

    JD

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  • Posted

    Hi JD,

    It will help you if you get copies from all his bloodtests. You will be able to see what the \"normal\" range used by your particular lab is etc. Different machienes produce different results and can be in different units etc. But a serum B12 at 148 seems to me very low for some-one on B12 treatment.

    I am aware that different counties apply different ref values for what is considered \"normal\" serum B12. Although different \"counting\" machines will have different reference ranges I personally tried two different labs on the same day with testing my blood (serum B12) to find both came with the same result for serum B12 but both had completely different reference ranges for \"normal\". From that one can conclude that in one part of the country one would be treated for a B12 deficiency but not in an other county.

    Example:

    Hants Lab Ref range for \"normal\" serum B12 161-531 ng/L = 119 - 392 pmol/

    Surrey lab range for “normal” serum B12 : 220-900 ng/L

    Private Lab in Surry normal ref range: serum B12 180-914 pg/ml,

    Apparently national “normal” B12 serum levels for UK are: 138 - 780 pmol/ L.

    conversions

    pmol/l x 1.3553 = pg/mL

    pg/mL x 0.7378 = pmol/L

    It can there-fore make a difference at which lab/ hospital your blood is tested, if you will or not get treatment you may need, and as a prolonged B12 deficiency can result in permanent neurological damage it seems wise to me to make sure one has one's blood tested at a lab that will favour early treatment!

    Its sad so many inconsistencies exist for treating patients with a low serum B12, as good/ early treatment can avoid so much misery.

    To feel well, and have healthy blood production say it is essential his ferritine (iron storage) and folate levels are also in good condition. Other B vits are important as-well with blood production (B6).

    There are other ways of testing if B12 is available in tissue, although all tests seem still a bit of a hit and miss affair, none are 100%. Homocysteine could be tested, if high there is usually a B12 and or Folate def, then MMA, usually this one is best tested before treatment though and can then give an indication if treatment is working well etc is what I understand. Then one can have gastrine tested..

    Anyway I hope your husband will be seen to soon, I realy recommend you get copies, try to understand and there are websites that will explain bloodtests in detail. It takes time to build up B12/ good blood, seems to take very little time to sink back into an anaemic haze, its just sad to be so unwell, if there is no real reason for it to be so..

    Hope I make sense here,

    Kind regards,

    md

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  • Posted

    Hi thanks again for replies.

    MD have looked on website you suggested nut need to digest it a little more (so to speak).

    The info is complicated that you have sent me but we get the gist of it.

    It helps to talk to others who have or are suffering the same and helps us fight our cause for an answer and more injections. My husband now knows he isn't going mad - I thought he may be starting with dimentia as he remembers nothing hence I go to Drs with him.

    Will get back to you when he has had Wed injection and visit to Drs on Friday.

    JD

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  • Posted

    Hi JD,

    Good luck with the appointments!

    Just found new updated topic on cks.library NHS website, its the first time I read official acceptance that not all people do well on the once every three months hydrococobalamin treatment!

    See:

    Just found the updated guidance on PA/Folate at:

    http://www.cks.library.nhs.uk/home

    Updated topics - April 2008

    a.. Anaemia - B12 and folate deficiency

    b.. http://www.cks.library.nhs.uk/anaemia_b12_and_folate_deficiency

    c.. http://www.cks.library.nhs.uk/anaemia_b12_and_folate_deficiency/management/detailed_answers/symptoms_persist ...

    Anaemia - B12 and folate deficiency - Management

    What if a person is still symptomatic despite maintenance vitamin B12

    treatment?

    ===============================================

    Its the first time I read \"official\" acceptance that not all people do well on the standard three monthly hydroxocobalamin jab! Might be of help to you both!

    Kind regards,

    md

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  • Posted

    Hi again,

    Been to Drs this am. Hubby has been better in his mind all week but legs have got worse. He was very agitated this am and slurrying his speech and felt dizzy. He has had two injections this week which helped his Brain function better but not his legs. He is in a great deal of pain can,t get up the staircase(has to crawl) and when he trys to walk it is a great effort. also he has fallen twice. The Dr has checked his reflexes which he says are low but there. He has referred him to a neurologist - appointment is 5th June!- We tried to get in earlier but the Dr said it was routine therefore no rush. We looked into a private appointment (we have no medical insurance) it was over a week for an appointment and we were then told we would be referred back to NHS to go on list for treatment so it seemed quicker to just take the appointment. What is worrying is the Dr has suggested he may have lower motor neurone disease. Has anyone any experience of this as a result of vitamin B12 deficiency.

    I have not heard of lower motor neurone disease only motor neurone disease. Help!

    JD

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  • Posted

    Hi JD,

    I do realy think his B12 is far to low for some-one on B12 jabs and would have thought new loading (every other day for as long as he improves, which can be 2 years) would be worth trying real soon.

    But to answer your question:

    What are Motor Neuron Diseases?

    The motor neuron diseases (MNDs) are a group of progressive neurological disorders that destroy cells that control essential muscle activity such as speaking, walking, breathing, and swallowing. Normally, messages from nerve cells in the brain (called upper motor neurons) are transmitted to nerve cells in the brain stem and spinal cord (called lower motor neurons) and from them to particular muscles. When there are disruptions in these signals, the result can be gradual muscle weakening, wasting away, and uncontrollable twitching (called fasciculations). Eventually, the ability to control voluntary movement can be lost. MNDs may be inherited or acquired, and they occur in all age groups. In adults, symptoms often appear after age 40. In children, particularly in inherited or familial forms of the disease, symptoms can be present at birth or appear before the child learns to walk.

    I'm not puting a link as it may not be appreciated, its american NIH, All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

    You can find everything on the internet, gov sites and NHS etc are allways reliable for information, just use their search options.

    I just can not understand why there is no more investigation as to why your husband's B12 is so low with treatment..but I'm no medic and the neurologist is likely to know far more! June is not long...hope your hubby will cheer up a bit after his B12 jab, keep an eye on him..

    Kind regards.

    md

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  • Posted

    Hi again,

    Thank you for your reply and opinion. I also think it is his B12 being low that he is struggling. He has the tingling in his fingers also. The Drs insist his B12 is not low at 148!! We are hoping everything will change when we have been to neurologist and from everything I have read on internet and your comments it all points to the B12 problem. I do not think it is MND but of course with my hubby' s state of mind at the moment he can 't think straight and assumes the worst. I am an optimist so will keep jollying him along any other experiences or comments similar to ours would be appreciated from anyone.

    I will of course report on any further developments and after our visit in June to specialist. Thanking you again.

    JD

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