battling B12 deficiency/pernicious anemia

[soandsing]

For years , I have been going through cycles of extreme exhaustion, brain fog , balance issues, and I have lived with ringing in my ears since youth. Three years ago, stumbled into the doctor feeling like I was dying. He ran several test. Did nothing for treatment. He did send me to a neurologist upon my repeated request. Both suspected myasthenia gravis. Years earlier I had been suspected of multiple sclerosis . Many test later, still no diagnosis. The neurologist did say my my brain was misfiring. She put me on a low dose of gabapentin. These episodes continued. Once again I return to the doctor. More blood test. This time he orders even more blood test . He thinks I have pernicious anemia. Tells me to start taking B12 . I already take a multivitamin with a very large dose of B12. Two months later, with more blood test, after several days of not hearing back , I called and got the results from another doctor. She had me come in and started me on B12 shots. I took one a week for five weeks. She repeated the test for B12 . She stopped the shots, and told me to come repeat the test in three months. During all this, I finally decided to get copies of my test results. I found out that the first time I had been to the doctor my B12 was less than 142, but the doctor did nothing about it. Life got busy, and I did feel a little better. I went five months, and was stumbling back into the doctors office feeling like I was dying again. Overwhelming exhaustion, and brain fog , and horrible balance issues, with numbness and tingling, and heart issues. My b12 had dropped to less than 142 again. She once again started me back on the B12 injections. But also did a mri of the brain to see if I had a stroke because my walking was so bad along with the brain fog. No stroke was noted. After the 5th injection of B12 , some to the issues started to go ease up again. Now she recommends monthly , possible bi weekly shots possibly the rest of my life.

[wedgewood]

A you have been diagnosed with Pernicious Anaemia, you will need B12 injections FOR LIFE - Tablets will not do.

You will find out by trial and error how often you need to inject to keep symptoms at bay . We are all different , and require difference of regularity for injections . eg I need weekly , some need daily -some manage with 3 monthly .

If you cannot manage on what your GP subscribes , then self -injections are an answer . If it comes to that , you can get information on here . Best wishes

[Sleepybunny]

Hi,

Sorry to read that you've had such a hard time getting answers and finding out what's wrong.

I wish I could say I was surprised but many on here will be able to relate to your experiences.

Some links that might be useful.

It's possible that some links may have details that could be upsetting.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members including from USA.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

PAS membership is separate to membership of this forum.

There is a PAS support group in Chicago area.

pernicious-anaemia-society....

Other B12 deficiency websites

B12 Info.com (formerly B12 Deficiency Info)

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute _ Netherlands

Has useful lists of symptoms and causes.

b12-institute.nl/en/home-2/

Treatment

It's vital to get adequate treatment.

There have been forum members who developed permanent neurological damage due to delayed or inadequate treatment.

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog about PA, mentions SACD

martynhooper.com/2010/09/21...

I suggest finding out if there are any regional or national guidelines on treating B12 deficiency and PA in your country/region.

Some health professionals have wrong ideas about B12 deficiency

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

B12 article from Mayo Clinic in US - aimed at researchers/health professionals

It's one of the best articles I've found on B12 deficiency and might be worth passing to your doctors.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from other countries)

b12-institute.nl/en/diagnos...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

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

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

There is also a paediatric version of above book

"Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Sally Pacholok is a US campaigner for better diagnosis/treatment of B12 deficiency.

She has written some online articles about b12 deficiency which you may find helpful to look at.

If you search online for " Pacholok b12 deficiency slide show" you should be able to find a slide show about B12 deficiency that she presented at an anti ageing conference.

US articles about B12 deficiency

pernicious-anaemia-society....

chicagotribune.com/lifestyl...

nhlbi.nih.gov/health/anemia...

I found other useful articles by searching for " US guidelines B12 deficiency".

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

I'm not medically trained, just someone who struggled for years with undiagnosed and untreated B12 deficiency.

I'm in UK.

[Holland72 in reply to Sleepybunny]

Wow, you know really much about it! Yes, there are differences between the Netherlands and UK. For example about folate. Thanks for the links

[Sleepybunny in reply to Holland72]

If you're in Netherlands, might be worth looking up Henk de Jong who has written about B12 deficiency.

Also the B12 Klineik

b12kliniek.com/

Your doctors might be interested in Club B12.

It's a group of researchers and other interested people worldwide who are looking into B12.

club-12.org/

[Cherylclaire Forum Support]

You have suffered needlessly for a long long time. If the medical profession was better taught about B12 deficiency and the devastating daily effects, they would be less inclined to ignore borderline/low/below range test results - and might even be concerned about a southerly direction of travel .

Sounds as if your doctor has now realised this.

There is little point in throwing you a lifeline, then cutting the rope. As my friends have already told you, treatment is for life not stop/start after measuring what has just been introduced. This is why the UK medical guidance have advised against retesting after B12 injections have started - there is no point.

In the UK, the medical advice to doctors for those presenting with neurological problems, as you certainly do, is for every other day B12 injections (EOD) until no more improvement can be gained by this. Then on to a maintenance dose - which is (to me) the frequency at which you can retain all the gains you have made during the EOD injections - but in reality is suggested as every 2 months.

These guidelines can of course be overruled by an observant experienced GP going by their monitoring, observation and by being confident enough to be patient-led regarding symptom return.

I have found that my symptoms are generally managed by an injection every 3 or 4 days while my cousin has an injection every six weeks and is fine.

Really no need to allow patient deterioration to be the guidance, and you have already proved that oral supplements are insufficient to help you, even at high levels.

I hope that you can continue with improvements, and that your doctor continues to treat what she sees.

Did the neurologist check for SACD of the spine by MRI ? This is where spinal nerve deterioration can be due to damage to the protective myelin sheath from severe B12 deficiency. Still worth checking now - nerve damage can take a long while to repair and a neurologist could advise your doctor to continue with the frequent injections for longer to allow for this repair.

Let us know how you get on.

[soandsing in reply to Cherylclaire]

I get my 6th injection today . My boyfriend is a retired RN and has been giving them to me. So, far the doctor has a standing order in place to have my levels checked monthly. And at least for the next few months, she has provided me with the prescription for the B12. I am starting to get my balance back, and the brain fog is lifting. Hoping to continue to improve. So far, the only thing the neurologist has done is a nerve conduction study. I live in a part of the state where good doctors are hard to find. But I am hoping this young doctor continues to work with me.

[Cherylclaire Forum Support in reply to soandsing]

Let's hope she is seeing all the gains you are making. Who would want to stop treatment once it is proving effective ? Surely not when there are still improvements to be made.

Keeping a daily symptoms chart or diary showing when injections administered and when symptoms return/ worsen might help you (and doctor) find a pattern emerging .

[shaws]

My mother had P.A. but she died through her GP stopping her injections. GPs decision caused her to develop stomach cancer and die.

I also have P.A. but my GP has told me I can have as many injections I feel I need.

I have settled on a monthly injection that the nurse gives me.

[soandsing in reply to shaws]

I am so sorry to hear this. My grandmother , I believe died from what started Pernicious Anemia. One of my sisters has also battles with low B12, but never diagnosed.

So, far my doctor is working with me, and has given me a standing order for bloodwork until we figure out just how often I am going to need the injections.

Today will be the sixth in the past 5 weeks. My energy is starting to come back, and the brain fog is lifting. Balance issues are better as well. But still deal with some neuropathy.

[shaws in reply to soandsing]

Its a wonderful feeling when we begin to feel much better,

[shaws]

It is really gives us immense relief when we find the dose we're taking is improving our health.

Hopefully, in a couple of months your symptoms will be relieved and you will feel your body is more 'normal' and you can go 'out and about' without any symptoms..