My spine has just recently started to degenerate and quite quickly which is scary. Can anyone tell me what is the best way of treating myself with B12 to minimise the damage, before it gets any worse. I mean how much B12 injections can I take and which ones should I take to flood myself with B12 to prevent more harm. I have been telling my DR that i have PA for a year and a half and she did not really believe me and said it was anxiety. My sister has it and others in my extended family and I have malabsorption problems and was on omeprazole for 4 years. ALL of a sudden I have become worse and have real neurological problems. Why don't the doctors listen to their patients. I think they have little knowledge of PA.
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If you look at recent posting on here wedgewood goes into great detail about how to get yourself ready for B12 injections.
Is it a GP or a Specialist that you have been seeing with poor consultations? You may need a good specialist for advice. If your Iron levels are way too low you should have a red cell blood transfusion. This has made a tremendous difference to me when my levels were rock bottom & it is only 2-3 hours in the hospital as a day patient.
When you say your spine is degenerating do you mean your discs are becoming misshaped
or really small or that you are getting multiple fractures in your spine?
The best way to give B12 is either by intramuscular injections into the thigh in a zig zag method or sub cutaneoudly under your umbilicus and I would be happy to describe that tecnique to you if you choose to go that way. You draw up the injection with the needle size wedgewood explains but for sub cutaneous use one has to use a smaller needle for the actual injection & different technique.
We're all different and, particularly with malabsorption problems, it's hard to say but as there is no upper intake limit people generally do whatever they need.
I buy the 1.5mg in 1ml Pascoe brand ampoules and SI every day. One of my friends uses 2 of these every day to give her 3mg daily. Quite a lot of people find 2 x 1mg hydroxocobalamin injections works for them.
For the extra B12 to work properly lots of other things are required and you might benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron.
With malabsorption you might need to take quite high levels of the above to make sure enough gets through.
While 400mcg folic acid is fine for most people and I can't recommend high levels, some of us with malabsorption issues have to to have 5 to 10 mg (and more in some cases).
Plain folic acid doesn't work for me and I need methylfolate, while a few others need folinic acid. My system has mostly stopped absorbing this if swallowed but I have found that most folate tablets taste OK and I have got good results by putting them under my tongue. The trick is to buy good quality ones that aren't too gritty! My absorption rate varies and I need about 3mg at best. At the worst I have needed to use about 20 x 1mg tablets just to get what I need into my system.
I sometimes need more than one a day of the multivitamin and mineral supplements.
I stick potassium chloride and magnesium chloride in a marmite sandwich to boost my levels of potassium and magnesium.
To get enough iron I need to take iron bisglycinate on an empty stomach (at least 2 hours after food and 1 hour before) and eat lots of red meat and fish for direct sources of heme iron as my conversion process appears broken.
And that's what I've found so far as various bits of my system give up!
If you or anyone has any other information or tips on how to manage malabsorption I'd be very grateful to hear them.
As far as the Drs go I think it is just a case of no-one can imagine how bad this is unless they have it. What I wouldn't give to have a way of showing others what it's like, just for long enough for them to understand! The only other people I hear of with our sorts of symptoms are those on chemo where the drugs are replicating the effects of our malabsorption.
Thank you Clive, I have just recently joined and have spoken to Martyn a few times. I have read a lot of your posts and they have been so informative. I have learned so much from you and others on this site. Good honest advice from only people who have experienced this illness could know or understand. You really are a great asset to this forum and help people like me who are new to the site and are trying to search for answers. Certainly any Dr I have met does not seem to know or have much experience of PA. I have been met with people telling me I'm just anxious and my red blood cells are not abnormal so I can't have PA. It seems if you don't meet their protocol tickbox then you are treated as if you are paranoid and left to become sicker. I have now started treating myself as I don't have much choice.
It it your spine (the bone), or your spinal cord (central nervous system)? Please clarify because damage to either has separate causes and different treatments. Thanks
B12 deficiency can contribute to SACD - and the treatment if that was the case would be to correct the B12 deficiency.
Taking high dose folate supplements in the presence of a B12 deficiency is not recommended as there are some very rare cases in which this seems to have triggered SACD. Recommendation would be to start treatment for B12 deficiencies 24-48 hours before starting to treat the folate deficiency.
As fbirder says it would be useful to know how the SACD was diagnosed, particularly as B12 isn't the only factor involved.
Think other responses have covered how to source B12 to treat an absorption problem. People vary a lot in how they respond post injections so it isn't really possible to provide you with an exact protocol
It is awful when they do not listen to you and what you are going through. I have B12 deficiency and PA diagnosed at the same time (about 20 years ago). Also my dad had both and both my siblings have B12 deficiency but taken supplements. I have injections every three months (like my dad did), it was every two but now back to three month intervals.
I also suffer with back problems which falls on deaf ears. I feel that my back is collapsing, the pain is horrendous and I can not stand for long. This has been going on for many many years also, (nearly as many as when my B12 deficiency was diagnosed) but as I say, it falls on deaf ears. They won't even scan me. Sometimes it feels I have lead weights hanging from me because of the pressure and consequent pain in my lower back. All I get told is to lose weight and walk, but I can't mobilise for long, let alone walk far. Everybody except my husband, think I am lazy, but I am not. I sometimes feel like banging my head against a brick wall in frustration). I did smile at your comment about the dr saying it was anxiety, it is bound to be if she is not listening. I got the T shirt on that one.
I have had a bone density scan, but that was only because the Endocrinologist was trying to prove a point about my thyroid medication and was proven wrong.
I think I am going to have to pay for a scan to see what is going on.
Hope you can get your B12 and PA deficiency under control and get the necessary medication/injections and also pain management at least for your back problem.
" I have injections every three months (like my dad did), it was every two but now back to three month intervals."
Have you heard that BNF guidance on b12 treatment has changed recently in UK to a B12 jab every 2-3 months? If you have neuro symptoms, jabs should be every 2 months.
Hi Sleepybunny, I read it earlier about the change in frequency. The reason they changed from three months to two months was evidently because my levels were in normal range, still disagree, hence the reason I mentioned it but it falls on deaf ears. I am worried about my back now, but do not know who to turn to.
Thank you for all the email, I am reading through each link.
PAS have a leaflet about Sub Acute Combined Degeneration of the Spinal Cord in library section on website. You would need to be a PAS member to access document.
If you're in UK, there may be a regional NA group. Neurological Alliance is an umbrella group for various organisations that support people with neurological conditions. PAS is part of this alliance.
Thank you so much for all your super helpful replies and amazing information, I am so grateful, your kindness made me cry. I am a member, just recently joined. Its central nervous system damage. I have not had a diagnosis yet because my Dr has been very unhelpful, that why I have been getting sicker. I have all the symptoms of pernicious anemia for some time now but because I don't have macrocytic anemia she does not believe me. Martyn Hooper gave me a paper to take into her and she just dismissed it. I am now changing Dr's and have booked an appointment with a private G.P. this week to assess me as I'm getting nowhere. I have ataxia and can't walk straight without tripping or falling. I look drunk when I walk. I have no reflexes left in my lower legs and have constant tremors and electric shock feeling down my neck and spine. I was a neuro nurse at one point so I know this is the symptoms of CNS spinal damage. I'm so gutted as it just happened recently and I am trying to treat myself and reverse or minimise the damage to my nervous system if I can before it is too late.
It's great for us to have someone with your knowledge and experience join our group, albeit hard for you.
You can probably tell me much more about nerve repair than I can you and I can't tell you much about my early progress because I lost a whole year or more due to memory and cognitive function loss but I know I was barely able to walk at all with ataxia when I first started daily SI but within a year I was fairly OK.
3 and a half years on it's only my arthritis that stops me running and I am much less prone to dropping things and misjudging distances with my limbs - I make less clatter trying to negotiate life! I can operate the joystick controls for a loader on a tractor again and things like that! Looking back I know I was helped by horse riding working as incidental therapy.
I sincerely wish you a good degree of recovery - remember things can keep improving for a very long time.
My friend on 3mg daily sustained a lot of damage when she rapidly deteriorated but has improved significantly too, as have lots of us, so I hope you can take some encouragement from this.
"because I don't have macrocytic anemia she does not believe me"
There is a useful summary of mainly B12 documents in third pinned post on this forum. Think it mentions that not everyone with B12 deficiency has macrocytosis as does BSH Cobalamin and Folate Guidelines (link in my post above)
NICE guidelines Coeliac disease recommends that anyone with unexplained B12, folate or iron deficiencies should be tested.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
Check both tests were done if you were tested in past for Coeliac disease.
Total IgA test checks which people have IgA deficiency (an immunoglobulin) but is not always done. People with IgA deficiency need different tests for Coeliac disease.
It's your right in UK to request a referral but GP does not have to agree. I used to put referral requests in a brief, polite reply along with evidence that supported request eg symptoms, family history, extracts from UK b12 documents.
If you have gut issues, have you been referred to a gastro-enterologist? They might be able to see signs of gut damage caused by PA, Coeliac disease, H Pylori infection?
Medical Records
Have you got copies of all your blood test results? I learnt that being told everything is "normal" does not mean everything is....
Some forum members get a complete set of medical records.
"Martyn Hooper gave me a paper to take into her and she just dismissed it"
Might be worth contacting PAS again at some point. Might also be worth putting some of the info into a letter addressed to GP. In UK, letters to GP are filed with medical records and are therefore harder to ignore.
Writing letters can irritate some GPs though.
"I have ataxia and can't walk straight without tripping or falling."
Have you had tests to check your proprioception sense ( awareness of body in space)?
Problems with proprioception can be associated with b12 deficiency. If you've seen a neurologist, did they do any neuro tests on you with your eyes closed eg
1) Romberg test?
2) Walking heel to toe with eyes closed
Important that these tests are only carried out by doctor at medical premises due to risk of harm from loss of balance.
If no to neuro tests with eyes closed then it's possible that proprioception sense was not checked.
When all possibility of getting B12 treatment from NHS ended, I resorted to self treatment as a last resort.
There are some useful articles in English on Dutch B12 website. See link below.
HI Sleepybunny, thankyou, it's so good of you to send me all this information, I will read through it tom. I have tried all the neuro tests and have failed all of them which is scary. I am going to see a new private Dr this coming week and hope that they will refer me to Neurology. My experience of the NHS has not been good and leaves me having to go private to get any help.
Your ataxia could have some more reasons. What about tingling and sensibility feelings? A good neurological examination should exclude other reasons. What about Your eyes, sight is s good?, lenses?, finger nails?
In my case (Germany) there had been no hints in the blood status. All was normal since I had taken multivitamin drugs for years before testing. In the neurological clinic They didn t find anything and released me on a wheelchair 16th od July. I needed that nearly for two months. At home on my wheelchair again I started immediately to substitute with injections daily for 14 days, then one all second week. In the midth of September I started to do short walks and am able now to buy my supply independently. Ankle reflexes came back, tingling stopped.
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