aching thighs

[gpw61]

hi im new to this condition ,awaiting my first jab on Mon the 6th then every two days for a fortnight .The question does this condition makes your thigh muscles ache along with the fatigue? thanks

[Nackapan]

It can make everywhere ache!

You should be getting 3 injections a week total of 6 at least if you are in the Uk.

Take if easy and let the b12 set to work.

[gpw61 in reply to Nackapan]

thanks for your reply , im just tired all the time and aching is making me depressed just hope thing will improve

[Emmers5 in reply to gpw61]

My thighs used to ache and felt so heavy I could barely lift them! You will feel better soon, but be patient. Recovery takes time and some symptoms improve faster than others. If you are terribly symptomatic you may also begin to notice symptoms you didn't notice before as you recover. Don't get discouraged, it just takes time and you are on the right path. You need all the rest you can get. I went to bed with Netflix for a couple of months once I realized that I was sick and I really deserved the rest!

[Nackapan in reply to gpw61]

Yes it's very hard not to get down.

I realise I'm 'very flat ' compared to my old busy lively self.

I think it's a way of preserving energy.

I do find going out even for a very short walk good if that is possible for you.

Sometimes I ache really badly and have a robotic walk . At the beginning I couldnt walk in a straight line .

Then it goes as quickly as it came.

I do remember my legs being rooted to the ground feeling like lead in initial loading phase.

I hope when the injections start you will get some relief. It can happen for some quickly.it also with the surge of needed b12 that tiur body has been lackkng go into overdrive a bit with repair. Depends on how low you got and for how long.

Keep us posted on how you get on

[Sleepybunny]

Hi,

Do you have any neurological symptoms eg

tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, migraine, proprioception problems (problems with awareness of body in space) etc?

The reason I'm asking is that in UK, people with neuro symptoms should be on more intensive treatment.

1) UK recommended treatment pattern for B12 deficiency without neuro symptoms is ...

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months

2) UK recommended treatment pattern for B12 deficiency WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months. There is no time limit on how long every other day loading jabs can continue; could be for weeks even months as long as symptoms continue to improve.

"awaiting my first jab on Mon the 6th then every two days for a fortnight"

How often is GP planning to give you jabs after the forthnight of loading jabs is over?

If yes to neuro symptoms, does your GP have a list of all your symptoms especially any neuro symptoms?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Symptoms of Peripheral Neuropathy (PN)

nhs.uk/conditions/periphera...

Details of UK treatment in next links.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

cks.nice.org.uk/anaemia-b12...

Link about letters to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

If you think you are being under treated then worth joining and talking to PAS for guidance on info to pass to GP.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

If you join PAS, see article " An Update for Medical Professionals: Diagnosis and Treatment " in resources section.

pernicious-anaemia-society....

Vital to get adequate treatment or there is a risk of further deterioration including possibility of permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

I am not medically trained.

Lots more B12 info in my replies on thread in this link below. I suggest you have a look. Some info may be specific to UK.

healthunlocked.com/pasoc/po...

[dharmadoggo in reply to Sleepybunny]

New member here. Just wanted to thank you for all this information. I have been diagnosed with Fibromyalgia but I suspect PA. I have 95% symptoms as PA, particularly the neuro ones. Awaiting blood results this coming week.

[Sleepybunny in reply to dharmadoggo]

Hi dharmadoggo,

If you suspect PA, I recommend that you join PAS (Pernicious Anaemia Society) soon and talk to them. See PAS info in my first post on this thread.

PAS members can access contact details for PAS support groups in UK.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA and B12 deficiency in general are not always well understood by GPs and specialists so it pays to be well prepared.

Many people with PA and other causes of B12 deficiency remain undiagnosed for years even decades and some have permanent neurological damage by the time they are diagnosed.

It's not unusual for people with B12 deficiency from a variety of causes to be told their symptoms are due to depression, ME/CFS/Fibro, psychosomatic symptoms or that they are hypochondriacs. If you're unlucky you might get diagnosed with all of the above.

Some are misdiagnosed with MS.

Misdiagnosis of B12 deficiency

b12deficiency.info/misdiagn...

Blog post about B12 deficiency and ME/CFS

martynhooper.com/2018/02/10...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test but I suspect many UK GPs are not aware of the possibility of Antibody Negative PA.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

"Awaiting blood results this coming week. "

The best advice I ever got was to always get copies of all blood test results.

I was told everything was normal/no action more than once but when I got copies I found abnormal and borderline results. Many UK GP surgeries have online access to medical records. Details will be on your GP surgery website.

If you've had a test for PA, in UK it will be an Intrinsic Factor Antibody test. If the result of IFA test comes back negative this does not exclude the possibility of PA as it is possible to have Antibody Negative PA. See flowchart in my first post on this thread.

Take someone supportive with you to appointments, even better if they have read about b12 deficiency or they have spoken to PAS so they are in a position to back you up.

If you get diagnosed with PA, I suggest you get proof of the PA diagnosis eg a copy of test results, letter from GP/specialist , complete set of medical records etc.

Some forum members have had B12 injections stopped when they change GPs, change GP surgeries or when querying treatment because there is no record of a prior PA diagnosis in their medical notes.

Have you also been tested for Coeliac disease? Another auto immune condition that can lead to B12 deficiency.

UK guidelines suggests anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac. I suggest you read the guidelines below.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Besides PA, H pylori infection, low stomach acidity (hypochlorydia), fish tapeworm infection and exposure to nitrous oxide can all lead to b12 deficiency and there are other causes as well.

Has GP talked to you about your diet?

Do you eat plenty of B12 rich foods eg meat. fish, eggs, dairy, foods fortified with b12?

Being vegan or vegetarian can be a risk factor for developing B12 deficiency.

Might be helpful to write out a typical weekly diet, food and drinks for GP.

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info. See BNF links in my first post on this thread.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

I also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD.

Symptoms Diary

Some on forum keep a daily symptoms diary that tracks how their symptoms change over time and when they get B12 treatment. It can be useful evidence of improvement or deterioration in symptoms.

[dharmadoggo in reply to Sleepybunny]

Thanks so much for your most helpful reply. I've joined PAS now. Best wishes

[gpw61 in reply to Sleepybunny]

Hi thanks for your reply 6 jabs over a fortnight then a loading jab after 3 months depending on bloods and how i feel at the moment any improvement would be nice

Thanks

[Sleepybunny in reply to gpw61]

Hi gpw61

I'm assuming you're in UK.

You appear to have been put onto the treatment pattern for those without any neuro symptoms.

If you have any neuro symptoms, my understanding is that you should be on the following pattern....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

There is no time limit on how long every other day loading jabs can continue; could be for weeks even months as long as symptoms continue to improve.

See BNF, BSH and NICE CKS links in my reply for more info on UK treatment.

Don't let them fob you off with inadequate treatment if you have neuro symptoms as the consequences can be severe including the possibility of permanent damage to the spine.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

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

"6 jabs over a fortnight then a loading jab after 3 months depending on bloods and how i feel"

Even if you have no neurological symptoms BNF indicates that GPs can give maintenance B12 injections every 2 or 3 months. It used to say every 3 months for those without neuro symptoms so it's possible that your GP does not know the treatment pattern has changed.

BSH guidelines (see link in my first post) make it clear that retesting b12 levels after treatment has started is irrelevant.

Have a look at the summary of B12 documents in the fifth pinned post on this forum which mentions the issue of retesting B12 after treatment has started.

B12 levels would be expected to be high after treatment has started but some GPs think high levels of B12 are toxic and stop injections.

People who have high levels of B12 without taking any B12 supplements or B12 injections should have thorough tests.

Treatment for PA is lifelong and should not be stopped. Suggest you try to get proof of your PA diagnosis eg copy of IFA test result, letter from GP/specialist etc.

Please think about joining and talking to PAS (Pernicious Anaemia Society) if not already a member. In the event that your GP stops your injections due to high B12 levels in your blood, PAS may be able to intervene on your behalf .

PAS have a leaflet " Treatment is For life" in library section on PAS website.

pernicious-anaemia-society....

[Sleepybunny in reply to gpw61]

Hi again,

I forgot to mention on this thread that some parts of UK are using local guidelines on treating B12 deficiency that are years out of date.

I suggets you track down the local guidelines for your area of UK and compare them with national guidelines eg BSH, BNF , NICE CKS.