Nerves

[Mozza127]

Hi been taking b12 now 3 years I inject every 4 weeks over the last couple of months notices tingling pain in feet and knees and arm and tightness in my knuckles when I wake up.also back pain and bladder pain don't know if I'm not getting enough or my nerve endings slowly waking up

[Narwhal10]

Hi Mozza127,

I am sorry to learn, from reading other posts of yours, I can see that you have a bit of a Medical History. P.A./B12D is not to be regarded in isolation. It is a Holistic Approach. We are all individually extremely complex because we all different ages, length of deficiency, severity of deficiency and then co-morbid illnesses/diseases. Doctors have to put this massive jigsaw together just for 1 person.

Similarly, I feel it quite unsafe to put everything down to P.A./B12D when somebody can be developing or experiencing new signs and symptoms of another illness, condition or disease. This maybe something simple like B2 (Riboflavin) deficiency or a very serious condition.

I know that may sound harsh but I am aware there are a few Clinicians who access the site. I am a midwife who was taught nothing about P.A/B12 D but I do now. I try my best to help people on here but then spend quite some time trawling through previous posts to find out what is going on with individuals. I really wish people simply filled in their biographies, I can access everyone’s medical history and can advise far more quickly. Plus, I will always admit, sorry, I have limited knowledge about a disease but will look them up in my medical textbooks.

Equally, people often forget that I have the disease myself and 4 other autoimmune diseases.

Medical History

Gout - currently taking 800 mg of ibuprofen and 30 mg allopurinol

non Hodgkin’s lymphoma.

P.A./B12D.

Symptoms

For the past 2 weeks, you have been experiencing tingling pain in feet and knees and arm and tightness in my knuckles when you wake up. Also back pain and bladder pain.

You mention bloating and stomachache.

It may be something simple like you may need more frequent injections. 🤷‍♀️ People wrongly believe that we have this set frequency of in your particular case every 4 weeks.

Our bodies do not work like that. They work harder in colder months, they work harder over the Christmas period running around visiting and celebrating, less sleep, richer foods.

The only way you will know is by injecting more. The physiological (biological) response is NEVER to be underestimated.

Best wishes.

🐳

[Mozza127 in reply to Narwhal10]

What a very good response. Thankyou I will try thatWhile I'm here I had when I was 18 cancer and I was injected in hospital with strong bouts of chemo for 3 weeks then zapped with 18 zaps of radium from my jaw down below my rib cage .I always suffer with a bad back and chest in winter and have asked my docter what damage these treatment have caused.all I know is I have scarring on my lungs..but the seem not to know as I'm 56 now.also stress is this a big factor

Thankyou ian

[Narwhal10 in reply to Mozza127]

My pleasure,

I am cautious because I would not want to miss anything especially given your history. On the internet, it is very difficult because I practice Old School. Using my eyes, ears, hands and even smell. (Diabetes and infections have odours that we recognise.)

You are aware that you have scarring on your lungs therefore, for you, you have your individual ‘normal’. What you put up with on a day-to-day as a consequence. Gout is a devil but again, my knowledge is limited but it is another inflammatory disease. In order for the body and brain to heal and repair, it loves rest. So, many times, I hear, You have to keep going. This approach is wrong with chronic illnesses, Pacing is key. Find your inner sloth. Learn to ignore things and prioritise. Our Nervous Systems and our Immune Systems really do love peace and quiet.

Best wishes.

🐳

A sloth just hanging out.

[Mozza127 in reply to Narwhal10]

Yes thanks your right I need to rest I lost my daughter 5 years ago. So my mind is always on the go ..but I'm learning to put myself first and I am sleeping better ...at last..thankyou

[Narwhal10 in reply to Mozza127]

I am so very sorry to learn of your daughter. Grief is a rollercoaster and allowing yourself to feel can be difficult.

Sending a gentle hug.

[Technoid]

It seems doubtful to me that after 3 years of injections on a regular schedule, nerves would, of a sudden, be coming back to life. Nerve repair (if possible) is slow but its going to start instantly as soon as adequate B12 and other nutrients are available. I took 750mcg of B12 in my first day of tentative self treatment and already crazy things started to happen. The repair process then may take a long time but it doesn't go from standing still for 3 years to suddenly engaging. I would be looking at other possible neuropathy causes.

Of course, increasing B12 injection frequency can be trialed but that seems less likely to be the problem in my entirely unprofessional opinion.

[Cherylclaire Forum Support in reply to Technoid]

I disagree about an instant start to repair, but do understand your advice to search for other possibilities, and Narwhal10 's caution due to Mozza127 's medical history.

There was nothing instant about improvements for me. Very dishearteningly, for a long time there was nothing at all. Enough to make you give up. Except that I met a senior ENT consultant who told me (no tests required) that I obviously had severe B12 deficiency which would take a very long time to improve. That I was doing the right thing by self injecting every other day and that I must persist and continue with this treatment.

Meanwhile I went to all of the tests, scans, appointments requested for me by a very good GP for years, alongside monitoring my condition. Nothing else, additional or other, was found. Thankfully.

I have become better at knowing when I need injections a bit more often, and as Narwhal says, a set frequency does not always work as well - in particular, I have found, when senses overloaded: Christmas can be hard on them !

[Technoid in reply to Cherylclaire]

It may be that the functional deficiency in your case prevented the B12 from getting directly to work as it should, Cherylclaire. The persistent raised MMA you have mentioned in the past suggests that the B12 was not getting to work as it should have.

[Cherylclaire Forum Support in reply to Technoid]

Yes, this is true. I doubt that I'm completely on my own with that, just that having an excellent GP meant an early diagnosis, B12 treatment at the necessary frequency, monitoring and referrals. Sadly, I think this is the part where my case becomes fairly unique.

[Mozza127 in reply to Cherylclaire]

I'm going to do it every 2 weeks see it helps 😊

[Wwwdot]

Hi Mozza

Some good advice above. I am sorry to hear about your daughter and yes stress and bereavement are big autoimmune disease triggers. It could be your B12 is not enough to heal and manage the negative impact on your immune system caused by your grief. I am not a medic by the way ! This is my lay description of how I rationalise my observations of B12 working in my body.

Have you had your cofactors checked recently as it could be the B12 has insufficient cofactors to work properly. So check potassium and magnesium as it helps potassium absorption and also folic acid. I think vitamin D is worth checking too.

If co-factors not optimal then I would supplement and see if that makes a difference. If not different then increasing B12 frequency can cause no harm and if no resolution then perhaps consider other possible causes.

I would keep a journal of treatment and symptoms. Grief diverts B12 from healing, it may be that you need more B12 to cope with bereavement- my body did. But cofactors are very important.

🤗🤗🤗🤗

[Mozza127 in reply to Wwwdot]

Yes your right..thankyou

[Hockey_player]

I seem to need injections about once per 2 weeks to stay tingle-free. It would do no harm to increase the frequency of your injections to see if that helps.