I have Multiple Sclerosis

Two months ago I was given a blood test because I was feeling extremely fatigued. The results were large red blood cells and a b12 count was 158. I was prescribed 6 injections of b12 to boost my levels which made me feel amazing. Now six weeks after I'm back to feeling extremely fatigued again but my GP refuses to give me another injection telling me I have to wait until 3 month after my initial injections. I'm very frustrated because I know what a difference they make to my life. Does anyone out there buy their own b12 injections and is it safe to do so? I look forward to any replys..

11 Replies

oldestnewest
  • Yes! so many of us do that!

    You can buy B12 without prescription in Germany and France which means you can source it from German pharmacists - which is what I do - though my main source of B12 is actually by nasal sprays which work very well for me.

    Medisave is a favourite for needles.

    Sublingual tablets work for some people - also sublingual sprays ... and some find skin patches work for them - so plenty of options to try out before you get to needles - everything except injections is available without prescription in the UK.

    You can also buy crystaline B12 (generally methyl) to mix with saline but the saline is covered by prescription only rules so getting hold of it can be more tricky - though at least one charity dealing with drug addicts does manage to provide it.

    Possible as well that the MS could be a misdiagnosis - quite common - as B12 causes similar degeneration ... even if it is MS B12 some MS patients respond very well to B12 therapy because of the role it pays in maintiaining the lining around nerve cells which degenerates in MS.

  • I've had MS for 20 years and been on beta-interferon then Tysabri but had to stop because I was high risk PML. Now I'm taking Tecfidera 240mg twice daily along with Lansoprazole 30mg for an upset stomach which Tecfidera causes. I'm frustrated at my medical team not believing me when I tell them the enormous difference vit b12 shots make - I'M NOT MAD as they seemingly believe..

  • Sorry but medics are often totally ignorant when it comes to B12 - which really doesn't help anyone. Particularly disappointing as there are a number of studies that show that significant numbers of MS patients (think about 30%) respond well to B12 supplementation - try getting hold of 'Could it Be B12?' by Sally Pacholok which has references to various studies.

    Not an expert in MS but iIf you were taken off one medication for being a high risk of PML then you probably shouldn't be on tecfidera either

    healthline.com/health-news/...

    Lansoprazole is a PPI (proton pump inhibitor) - a class of drugs that are well known to inhibit the absorption of B12

  • Pernicous anemia not b12 I think the future will tell us. That's what happened to my brother.

  • Hi,

    I've assumed you're in the UK. Some pople find contacting the PAS helpful. If you leave a message, they will get back to you.

    pernicious-anaemia-society.... 01656 769467

    "telling me I have to wait until 3 month after my initial injections"

    Do you have neurological symptoms? I've assumed if you've been diagnosed with MS you may well have neuro symptoms. Links below mention neuro symptoms.

    pernicious-anaemia-society.... The library has a symptoms list

    b12deficiency.info/signs-an...

    The reason I'm asking about neuro symptoms is that the info in the BNF (British National Formulary) in Chapter 9 Section 1.2 makes it clear that people with B12 deficiency and neuro symptoms should be treated with an injection every two days until they stop improving (this could mean loading doses over a period of weeks or even months) then they should have an injection every two months.

    You mention that you had 6 injections and have to wait three months for the next one. This sounds like the standard treatment for those who have B12 defic without neuro symptoms.

    In the past I asked my GP why I hadn't received the correct treatment for those with B12 defic and neuro symptoms.

    Google "BCSH Cobalamin and Folate Guidelines" this document came out in 2014 and as far as I know the NHS should be following it. It's a lengthy document but in my opinion well worth reading. Cobalamin is the scientific name for B12. I found page 29 useful, a diagnosis flowchart. The PAS website has a summary of this document in their library section.

    I have also read that B12 defic and PA (Pernicious Anaemia) can be misdiagnosed as MS. Sally Pacholok's book "Could It Be B12" discusses this possibility. Have you ever had a test to diagnose PA? This could include IFA (Intrinsic factor Antibody).

    b12deficiency.info/misdiagn...

    b12d.org

    This charity offers second opinions on diagnosis and treatment. I think people have to provide a full medical history.

    hdapatientcaretrust.com/ 020 7935 8366

    "The results were large red blood cells"

    This is called macrocytosis and indicates the possibility of B12 deficiency. One cause of macrocytosis is Pernicious Anaemia but there are other causes.

    patient.info/doctor/macrocy...

    There are some interesting videos on B12 defic. on Yotube. I did a search for "B12 deficiency Dr Chandy".

  • Very good response. I am in a field that is not mentioneable; however, I enjoy replies that have sources and sites the "patient" can access themselves and become more educated about their current circumstances. A lot of GP's & Specialists like their patients to be well informed so they can keep up with their [GP's & more] current treatment plan, as they vary, yet, in my opinion, do not vary fast enough. I've seen this disease take a 24 yr old mother of one, father was jailed, she found out she had MS the day her BW came back. During the pregnancy, she didn't feel well not right one morning and luckily got literally dropped off at Emergency at one of the Emory teaching hospitals, as she passed the second sliding door, she collapsed and woke up in ICU 5 days later. She'd worked as a med tech for years, the knowledge she did have kept her from GP's writing her off as "crazy" as I also read earlier. Trying to make this short, yet illuminate the "human factor" that goes along with any disease. And by that, I mean, the fear, confusion, need for very good medical help/advice/suggestion, etc. Tests are nice, most ranges are the culprit. Well the plethora of tests and diagnostics proved to be helpful, she'd developed a very rare blood condition known as TTP, in short, the white blood cells crash. Her numbers at intake were extremely low, so low a few more minutes, I'd no longer have this friend. So they ported her and did infusions day and night, after 32 days they tapered, she remained stable shd was released.

    It finally hit me as a person, that these patients, ALL patients, have a right to the best treatments available and possible without money causing issues (I'm in US). Considering the drug therapies pertaining to MS, I truly don't see the harm in aggressively pre-loading, and this whole "wait three months", I understand protocol, however, I also understand that a happier patient respond faster, heal faster, and simply feel better. I'd prescribe cortisone to raise this level of feeling good. Because with the maintenance meds being nowhere near sublime, I think B12, is the lessor of two evils

    I'm not to familiar with European medicine, I've heard more good than bad. I'd find a doctor that seemed to generally care about you on a human level first. Clues like looking you in the eyes, asking how you are feeling today, and maybe even feeling the sincerity in their voices. This is what any patient needs eur long-term diseases and such. They are out there, look into Life Extension, become a member, and ask away. Their amount of doctors that fully disclose they are members and practicing physicians has increased do greatly over the past decade, it tells me, there must be something good going on over there.

    B12 can do large wonders, the problem is it is very short lived. So, three months is great if I'm reading straight out of a book and tagging it as MS. But testing you as an individual with MS are two different things. :)

    Take car

  • The NICE guidelines say MS should not be diagnosed using MRI scan findings alone

    If, like me, your GP diagnosed after 1 blood test, IGNORE HIM

    He doesn't have the right and I'm afraid this is just the start of the breakdown in your relationship with you GP

    B12 symptoms can be exactly the same

  • Large red blood cells are a classic sign of PA/B12 deficiency and this, with symptoms of MS would indicate a misdiagnosis of the neurological symptoms, as GPs have limited knowledge of B12def. or latest research/guidelines and so it is often confused with other diseases.

    As SleepyB has already mentioned, the neurological symptoms should be treated aggressively according to the BNF "until no further improvement" as there is a short window of opportunity before symptoms may become irreversible.

    You may find these links interesting about Dr Terry Wahls, who recovered from MS. She was vegetarian and recovered by following a paleo type diet. Personally, I wonder if this was a misdiagnosis at the outset?

    terrywahls.com/about/about-...

  • Many thanks for all of your replys. Joining this forum is life changing. Understanding people who KNOW I'M NOT MAD..

  • "along with Lansoprazole 30mg"

    There are many drugs that interfere with the uptake of b12.

    b12deficiency.info/what-are...

    pharmacologyweekly.com/arti...

    nhs.uk/Conditions/Anaemia-v...

    nhs.uk/medicine-guides/page...

    A couple of other interesting books about PA.

    Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

    Chapter 9 in this book mentions the connections between MS and B12 deficiency. I have read that some people who have been diagnosed with MS have been found to actually be suffering sub acute degeneration of the spinal cord caused by PA (Pernicious Anaemia) or B12 deficiency.

    pernicious-anaemia-society....

    In the library section is an article on "Sub Acute Combined Degeneration"

    Living with Pernicious Anaemia by Martyn Hooper

    Martyn Hooper is the chair of the PAS (Pernicious Anaemia Society).

  • I've been self injecting once a week for about 4 weeks now with Hydroxocobalamin 1mg/1ml. I'm starting to get the brain fog back and fatigue has returned! I take 1 Solgar B complex "100" and 1 vitamin D 5000iu daily. I'm not sure what I should do now as after my initial loading dose of 6 injections I felt energised and in the land of the living! Any advice is most welcome..

You may also like...