I took my brother who has multiple sclerosis and needed a wheelchair to get there to see his doctor in the hope of proving he has pernicious anaemia instead of M.S or as well or just B12 deficiency.
The doctor was not happy, we tried to be tactful but he has that God complex, thinks he's right in everything, we practically had to doff our caps to get anywhere. In fact he was very exasperated with us. My brother reeled off just some of his symptoms....he has about 38 which I have taken note off, he mentioned his swollen tongue, burning feet, too weak to walk and that our father had pernicious anemia. The doctor said he hadn't heard anything there that would not be MS. ( we didn't think we better read out all of them as he was being so assy) the doctor said in Johns last test his b12 result was 328... Range 180 -1000 but because he was using sublingual b12, we said it skewed the results as his other test two years before supplements was classed as 'a bit low' at 150, the doc disagreed with this and was cross.
I asked if he had had the Pernicous anemia test or homocysteine tested or Holo TC but the doc said no, too expensive, he hadn't got that because his b12 was high and he wouldn't tell me that again!! He said the lab wouldn't test when the result of b12 was so high this March 2016 , he didn't know if they did anything else when the result was low such as investigate that year when he tried to look back at the results he couldn't find out. I asked him for a printout of the bloods and he said 'give me a chance' and then it was only the March '16 last one. He would not do a blood test today as it was too late in the day....the only appointment I could get and it involved a three week wait.
My brother and I talked about how B12 healed the myelin damage in MS and that it was cheap to try and that some MS patients were given it and he reluctantly agree to give him 5 loading shots of hydroxocobalamin and he could then have one every three months so I am so hopeful that this will help my poor brother who is on the verge of having to go into a home or something as he can barely make if off the chair he is so weak and only 60 years old. If it helps we will buy more b12 in nose spray or something.
Wish us luck.
Mary 😀
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Marymary7
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Well done for supporting him so well - I think we all wish we could have a sister like you! Good result - I hope it helps. If it does and you need more treatment come back to us.
For more information on sourcing supplies you could look up my profile and see my post "My Experiences".
Hi Marymary7. You are right, your bother's B12 is low. Not much time now but would just like to say that your brother's B12 level should be at least 1000 to effect proper neurological repair (some say 1500). And it's likely that because of his condition, he needs much more frequent injections. Some people need to inject every other day for a considerable period, if they have neurological symptoms.
I understand that some neurologists (but not all) prescribe high dose treatment with B12, to people with MS.
So, you are right to push for treatment, and for further testing for PA.
The pinned posts to the right of the home page will give you more information about B12 deficiency / PA. some people print out guidelines and take them along, as evidence, to show to their GP's.
Two very good books you could read are 'Could it Be B12 An Epedemic of Misdiagnoses' by Sally Pacholok and 'What You Need to Know About Pernicious Anaemia and B12 Deficieny' by Martyn Hooper.
Very good luck, post away if you need support...be very interested to hear how it goes.
Thanks Foggyme. I took Sally's book with me but the doctor was so aggressive it would of been counter productive to get it out. I can't believe it's unlikely my brother has had the full bloods for intrinsic factor, homocysteine etc. Now he is in the catch 22 thing with the doc in that his last result was considered high enough so ' no need to check'. Purely because of the supplement that I got him and encouraged him to take. I would not have if I'd read the info on here first.
He wouldn't even send a nurse to administer the loading injections in John's flat, my brother has to struggle to the surgery and it can only be done on the days I don't work and I could hardly push him up the ramp in their wheelchair....so hard, designed so you don't pinch it! So it's spread over 3 weeks because they don't have many appointments. That doc is the head one there, watching the pennies so I don't think another dr would order the full tests so I'm thinking of trying to get private bloods done.....any advice greatfully received.
Thinking about the PA tests but I read here that they are only 50 per cent correct/accurate does that apply to private tests or just NHS ones?
This is a maze I'm trying to work through. I need the same diligence with my undertreated Hypothyroidism! Yes I'm on that forum too.
Hi again Marymary7. I have to say that I've just read through all your replies and I've been stomping around the house in anger!
The way your GP is treating you and your brother is appalling, disgraceful, shameful, negligent...I could go on...
First, to respond to some of your queries...
Yes, the IF and PA tests done by the private sector are the same as the ones done by the NHS so would be subject to the same level of inaccuracy (50%). However, even if the tests were negative, John could still have something called antibody negative PA. Testing may not, therefore, give you a definitive answer, though a positive test would mean that your GP could not suddenly stop the B12 injections on the spurious notion that his levels are up and he doesn't need it anymore (something that is unfortunately quite common).
If you do want private bloods done, there are quite a few companies that do these (one being Blue Horizon) but shop around, as prices vary. Prior to ordering any bloods, it would be best to ring them first for advice, since some tests will be skewed due to B12 supplementation.
I think the crucial thing is that the B12 continues...the fact that your brother (John, I think) was able to ride his mobility scooter for the first time in weeks is good evidence that some benefit is being gained.
As your doctor has prescribed B12 injections he should be doing bloods to check on certain things (I.e. FBC, folate, ferritin, potassium (for starters, at least)....if he's is not doing these he is being negligent.
Now....other things....
First, a couple of rhetorical questions: would it be worth seeing another doctor at the same practice to see what their approach would be - they are all supposed to be professional and use their own judgement so might be worth a try?
Is John able to change to another GP practice (I know this is not always possible).
Given John's mobility problems and inevitable reliance on you, I'm really struggling to understand how your GP can NOT send out a community nurse to do the injections for him. This is bad in so many ways.
An idea - does the practice have a nurse who would be willing to teach you how to do the B12 injections for John? If there is one, they should have the authority to authorise this.
Here's something I've just learnt....If you use the formal term 'carer' to describe your relationship with John, then you can access support and other services on his behalf...it will also give you more of a 'voice' at the GP surgery. But obviously, John would have to be happy and agree to you doing this.
Does John belong to the MS Society? Nevertheless, its a very good website with lots of information about support and other services that are available to people with MS...services that your GP should be providing....but I bet he's not! Might be worth having a look to see what help he should be getting.
A couple of things spring to mind....a dietician (might help with his food problems), a specialist MS nurse or neurological nurse, Physiotherapy, oh and that thing your GP has refused...a community nurse. These are just a few of the service that John is entitled too and that your GP should be providing (excuse me if I'm starting to sound cross. I am, on his and your behalf 😀). I'm also thinking of your other brothers with MS.
They have a helpline 0808 800 8000 or helpline@mssociety.org.uk...might be worth contacting them if you have problems (or more problems) as they might come up with something that will help.
Finally Mary, some people here have had good results from writing formally to their GP's, outlining what treatment they would like to access and giving evidence to support their requests (i.e. Like the material pinned to the site). If you did this and asked for the letter to be put on your file, your GP might be more inclined to agree. But some react badly to these kind of actions and only you can know what is right for you and John.
If this is a route you decide to go down, the website b12deficiency.info has a very good section about writing to GP's and even contains draft letters you can use or ammend, at will. The site also has lots of other very good information and is well worth a read.
Here's a final thought...many people here turn to buying and self-injecting B12, when all else (medic's of all varieties) has failed. If you think John would benefit from more regular B12 injections (and most do), then this might be something that you both would like to consider (if it's something you feel able to do for him 😖). It's really very easy and if that's a route you decide to try, there are lots of people here who can help you with it.
Anyway, I seem to have rattled on a bit so I'll let you escape now 😀.
I wish you and John the very best of everything...but most of all I'd like to wish you a new GP.
Thank you so much for all the great advice. I need a day or two to assimilate everything and I still have a ton of reading to do from the links but I am going away tomorrow until Sunday on a rare treat staying at a pals holiday home in Devon with my old college pals.
I am cross too, my brother has been neglected in many ways....so sad, and when they didn't act when his levels fell so low in 2013. I doubt the correct tests for PA were done.
He has been involved with an M.S nurse in the past and didn't gain anything from it, and gave up due to the huge efforts needed on his limited energy to go 10 miles away etc to them. I get their newsletters by email and read everything online that I can. I wasn't so involved until he was divorced so it's hard to know what happened with hospital and GP visits in the past and Johns memory is not good.
That doctor was so unsympathetic to John sat in the damn wheelchair trying to say his piece and remember everything, even asking the dr to treat the symptoms not the blood tests and I wanted to shout at that man and say, this man is dying before me while you mock him and say snidely rude things back to us about the orange ampoules he deigned to give us! He didn't even know that my brother has just been burgled by his cleaner and her boyfriend while he slept, someone he trusted took everything he had, his laptops, bank card, mobile, watches, both sets of car keys...left him with nothing, shaking at two in the morning hoping they didn't come back for his car. John kept his dignity, he does not ask for much and he is in great pain and discomfort all the time as well as so weak and withered down one side with a poorly hand, leg, foot and arm all pretty floppy and useless.
My blood boils when I think how the NHS does not care about John at all.....that doctor practically kicked us out as we had been too long so I couldn't ask, when will John get tested again and can they look at thyroid too? He even said to me, 'I've told you once and I won't say it again...his bloods are high so he doesn't have Pernicous anaemia' in a nasty way! He didn't agree that the b12 spray had skewed results....so condescending!
Marymary7, it makes my blood boil too! What a sad sad state the NHS is in when it comes to chronically sick people!
Your GP is a real disgrace...as PAS-admin says, horrible...but that does him too much justice!
Hope you manage to switch off and have a really splendid time with your old college pals in Devon...lots of laughs and lots of things that make you happy 😀.
Take very good care and please let us know how you get on xx
Glad you have got a little way forward in treatment for your brother. I expect you have scrolled through many posts on here and i dont want to alarm you, but be aware that your brother may have days when he feels worse whilst on loading. It might help to give him multivit/mineral tablets and some potassium rich foods ie bananas now, if he doesnt already and a b complex tablet. These should help him process the high dose of b12 given by what seems an extremely obstructive gp!
Thanks, I have trouble getting him to take anything he is so disillusioned. Most foods seem to make him feel nauseous, even a small amount of food does and yet he still weighs 15 stone plus and makes me wonder if he has thyroid trouble too but I didn't dare say that, the GP would of exploded.
I will try my best to get some more supplements. He's too weak to even talk on the phone this morning which is often the case.
Mary
I also am praying for your brother. Try taking oral vitB12 tablets from Holland & Barret I keep advising this form of B12 because works for me & all I know. Good luck. How marvellous if an improvement happens.
In your other thread about 2 weeks ago, you mentioned a relative with PA and two with a diagnosis of MS. Have the two with MS ever been tested for PA and is your brother's GP aware that a blood relative has PA? Are there any other blood relatives with PA?
There is a chapter in the book "Could it be b12" about MS which includes discussion of whether b12 deficiency can be misdiagnosed as MS.
Point 3 is about being refused diagnostic tests for B12 deficiency. Writing a letter can be less confrontational.
Page 29 in the BCSH Cobalamin and Folate Guidelines shows the process a medic should go through with someone they suspect may have B12 deficiency. page 8 shows the Uk recommended B12 treatment for those with and without neuro symptoms.
Copies of test results
Does your brother ever get copies of his test results, some areas of Uk have online access for test results. Has he had recent tesst for folate, ferritin, full blood count(FBC) as well as B12? i learnt from experience that what i was told was normal/fine face to face or over teh phone was not always normal when i got a copy.
There are people on this forum who discovered they had been diagnosed with PA (Pernicious Anameia) in the past but had not been told at the time. Some people decide to get a complete set of medical records but this can be expensive.
Both my brothers have MS, I took one yesterday to the docs. Our father had PA but we told the doctor that yesterday and it was dismissed alongside the burning feet and legs, swollen tongue, pain and exhaustion all put down to the MS. I had 30 symtoms jotted down but he would of exploded if I'd answered for John.
I asked for copies but only got the last one with the false high due to the under the tongue b12 spray I got john😥
As you say it all takes years. I think just that one injection yesterday has helped John as he as gone out on his mobility scooter for the first time in weeks.
I emailed the PA Society but they said they cannot do ping pong emails and advice and that I must join to get research. So I may.
I've got Sally's book and read it I took it to the Drs yesterday but dare not mention it. I have never known such a nasty confrontational doctor ever. As far as he's concerned John does not have PA as his b12 was too high. He didn't know what happened about it when John was level 130 b12 a few years ago.... As far as I can tell nothing. He would not test now said that all the tests I asked for (as per the books advice) were too expensive and unnecessary... Note.... he is head of the practice and Scottish. I'm banging my head against the brick wall thats for sure.
Is it worth trying our own injections or would the b12 nose spray mentioned elsewhere not suffice?
I wrote something on MS and B12 years ago (in Dutch unfortunately) but referenced some articles. I could send those if you like? stichtingb12tekort.nl/vitam...
If he does get an IFA (Intrinsic factor antibody) test, be aware that it is possible forthis test to coem back negative but the person still has PA. The BCSH Cobalamin and Folate guidelines mention Antibody negative PA on page 29.
I am not a medic jsut a perosn who has struggled to get a diagnosis.
Hi Mary, how lucky your brother is to have you fighting for him to get treatment. As the injections aren't expensive it wouldn't hurt for the doctor to try the full loading dose regime, which is six injections over a fortnight. I would echo Sleepybunny 's suggestion that you contact the Pernicious Anaemia Society for more help and advice. They might be able to put you in touch with a more sympathetic doctor in your brother's area.
Thank you, I'm trying to work through things, assimilate and act. That doctor was horrible, I can't believe we got the jabs. 6 spread over 3 wks because I have to get him there and I work Thursday Fri and Sat. When it's not school holidays.
I have a photo of my brothers last bloods, he didn't take any bloods this time. I don't know how to put it on here from my iPad photos? Is it worth doing can anyone face looking at even more results to try to help? They didn't do very many of them.
Hi Marymary7....yes, please do post...sure someone will comment...unfortunately, you may have to put them in via the keyboard....iPads not as versatile as PC's (I have trouble getting links in also).
Please could you also include the reference ranges....thanks
"I have never known such a nasty confrontational doctor ever"
Sadly I have, more than one, I got shouted at when I was at my most vulnerable, crying because my body and brain wouldn't do what I wanted them to do.
You mentioned your doctor was Scottish, There is a Scottish petition about B12 deficiency that went before the Scottish parliament which he/she may be interested in.
"As far as he's concerned ..... does not have PA as his b12 was too high"
fbirder has compiled a summary of mainly UK b12 documents. It contains quotes that might help to refute some of the misunderstandings some GPs can have about B12 deficiency. If you click on link to fbirder's profile apge, there is a link to summary or if you look in the third pinned post on this forum. I take a copy of his summary to appts.
HDA
This charity gives free second opinions on medical diagnosis and treatment. You might need to give them a full medicla history, They are usually quick to respond to enquiries.
I am helping my brother too. He has Under Active Thyroid Disease, Type 1 diabetes , Pernicious Anemia, ( just recently diagnosed) although he has been getting the usual 3 monthly B12 injections for years for a deficiency in B12.
In the past 6 weeks he has been diagnosed with Addisons Disease, Adrenals.
He comes to me for a top of of B12 injections.
The thing is M, you just keep on doing what you are doing to help him and slowly and surely you will both get there.
Thank you Jose, I took him for his b12 jab today and asked if he could have a blood test as it's been ages since last one and they couldn't take it last week as too late for the van to take it but she said the doctor has said, take it in 6 months and refused to take one despite me telling her the dr didn't take it last week! I will have no idea what is going on and they obviously don't care. I will just have to get my brother on all the supplements recommended on here to make sure his folate it enough for starters.
Sorry about your brother, he sounds very poorly with all those illnesses. It's going to be very hard for you both.
Having to interact with people like your bother's GP is exhausting and frustrating to say the least.
Some members are so ill that they have to resort to self medicating.
They haven't the energy to keep begging and explaining, time and time again why they should have certain blood tests.
Many members give up and get private tests, but some fight on. Your brother won't ruffle any feathers methinks so the onus is on you Mary to do your best for him.
You also have to look after your own health so keep that in mind too.
When you get 'time' have a look at Co-Q10. It's a supplement that you probably know about. Google..... The different types of Co-Q10 and it very well may be worth a try.
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