GP put me on Pregabapentin because the pain and discomfort in my feet and legs kept me awake.Getting up and walking about eased it but can't sleep more than couple of hours and discomfort wakes me up.I have now started having bad vertigo and feel off balance in shops and often out walking which is scarey.GP gave me cinnarizine have used it many years ago but found very bad reaction with both together almost resulting in a road accident.Obviously not taking either now but have found I am increasingly off balance and have blurred eyesight at times.is this part of B12d as well?
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Know its a while since you asked if I had seen a neurologist.I went yesterday to John Radcliffe Hospital Oxford sent there by my neurologist at my local hospital to check her findings.
Had another nerve conduction session which confirmed yes there were significant signs of damage.Then saw the neurologist who did serries of tests and Romberg which I found quite scary He agreed that yes their was neuropathy but put it down to idiopathic reasons and my age!! Did ask him if my family history of B12 deficiency and mothers pernicious anaemia which I remember from a small child but he didnt think it was anything to do with it.Have asked him to request more B12 injections than the current 12 weeks from my GP and I hope he will do that for me.Have also had 8 different bloods done at his clinic so will request results from my Gp if he does actually receive them.Think I have to do my own B12 injections although I do have my 12 weekly one this week.I will ask a friend who was a nurse for 35 years to supervise first one just in case and my daughter in law has had to do warferin injections so she is quite capable of assisting as well.At a loss as to who else in the medical world to go to. I
Update from Neurologists John Radcliffe Oxford letter to my GP.
Went for a very belated 12 week B12 injection on Friday 23rd at my GPs and saw my regular nurse.I asked if she could check that a letter had been sent from Oxford and yes there it was.They have asked the GP to make B12 every 4 weeks.Obviously he hadnt seen the letter so nurse messaged him and kindly rang me on Monday Morning to say yes he had agreed and we booked following one for 3 weeks time!!
Strangest feeling on Saturday 24th I suddenly realised my pins and needles and numbness in feet had almost disappeared and my muzzy head had cleared and on a bit of a high all day.My long time friend said" you are so bright what are you on". Sadly pins and needles are back with a vengeance today but know that long term symptoms will take awhile to go if indeed they ever do.
Now wondering should I go ahead with SI which I had planned to do or continue with sublingual B12 daily 2 x1000ug +foli acid 5mg? I do realise that the recommended doseage is every other day until no further improvement in symptoms. However I dont think it would be well received at the GP if I start demanding more.I feel he is already not a happy bunny being told to increase the doses by the neurology department.I just had a day of little or no pins and needles and feeling good and just want to feel good again.Advice please
Hi Sleepybunny,Glad you mentioned anti-eleptic drugs and low B12 and folate levels yet another reason not to take them.Understand Gabapentin is used for neuropathic symptoms in diabetes and it probably does work for them.I just ended up completely unable to make a complete sentence and had severe vertigo.I have had vertigo sometimes with migraine symptoms as well and have found Gababpentin and Cinnarizine? together would knock out a horse.Not happy with my GP he should have checked my medications and at least warned me not to drive!
Like fbirder , I am interested in whether you have been referred to a neurologist as balance problems are usually considered as neurological. There are many health problems that can lead to neuro symptoms besides B12 deficiency so important to rule out other possible conditions.
One problem that can be associated with B12 deficiency is difficulty with proprioception. Proprioception is awareness of where the body is in space. I saw several neurologists but not one of them as far as I remember tested my proprioception sense even though I listed symptoms that would suggest possibility of proprioception difficulties eg
1) I would feel very unsteady when it was dark or my eyes were closed
2) When I was walking in the daytime and someone walked directly towards me I would lose balance and wobble because I could no longer see ahead of me into the distance.
Two neuro tests for proprioception problems
Very important that these are only carried out by a doctor in medical setting due to dangers associated with losing balance.
1) Walking heel to toe in a straight line with eyes closed, someone with proprioception problems is likely to lose balance or could veer off to the side.
2) Romberg test (eyes are closed in this test)
In UK, GPs are advised to seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.
You made me smile talking about not being able to focus and feeling disorientated while out in town and looking round a store with lots of items as they all seem to wave about in front of me.Didnt know this had a name and as for walking in a straight line as per the so called drunk test. did that on first meeting with neurologist and fell over which made the nurse laugh out loud.Yes I lose my balance coming down stairs and escalators are a no-no if going down.Very scary and have fallen as i have to watch where I walk on pavements as my right foot doesnt lift properly and I catchmy toes on uneven surfaces.Its a minefield out there!
Havent seen a haematologist as GP says all my bloods are fine folate and B12 ok. I have told him about my family history but he seems to think that is not really important.Just hoping my Neurologist is more savvy and will see her next Wednesday. Still going through all your reccomended literature so I can quote it to GP.Many many thanks for your kindness.
"GP says all my bloods are fine folate and B12 ok"
Do you get copies of all your blood test results? In relation to b12, I look particularly at B12, Folate, Ferritin and Full Blood Count (Complete Blood Count in USA).
I learnt from experience to always get copies after being told everything was normal face to face and over the telephone then finding abnormal and borderline results on copies. These days I don't accept being told results are fine/normal unless I have seen the results with my own eyes.
Links about blood tests (Some info may be UK specific)
Do you have a diagnosis of PA (Pernicious Anaemia)?
Have you ever had an Intrinsic Factor Antibody test? IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative/normal.
PAS (Pernicious Anaemia Society)
PAS offers support and info about PA. Based in Wales, UK but has members from around the world. Might be worth joining and talking to them if you think PA is a possibility.
In UK (See CKS link above) doctors are advised to seek advice from a haematologist for patients with B12 deficiency where there are neuro symptoms. Balance problems would usually be considered as neurological.
Has your GP contacted a haematologist?
Have you seen a neurologist? Just noticed you have an appt with neuro. soon.
One symptom that can be associated with B12 deficiency is problems with proprioception sense. This is awareness of body in space. I saw several neuros and I don't remember any of them testing for proprioception problems. Might be worth asking the neuro to check proprioception.
Two tests for proprioception problems are
1) Walking heel to toe with eyes closed.
2) Romberg test (eyes closed during this test)
Vital that these tests are only carried out by doctor in a medical setting due to risk of loss of balance.
In UK, people with b12 deficiency with neuro symptoms are supposed to get following pattern of treatment...
A B12 loading jab every other day for as log as symptoms continue to get better then a B12 jab every 2 months.
People in UK with b12 deficiency with neuro symptoms, sometime struggle to get above level of treatment and are sometimes just given the standard treatment for B12 deficiency without neuro symptoms ....
6 B12 loading jabs over 2 weeks followed by a jab every 3 months.
See BNF and BSH Cobalamin and Folate Guidelines for more details on UK B12 treatment.
Patterns of B12 treatment can vary from country to country. UK NHS uses hydroxycobalamin, some countries use another form of B12, cyanocobalamin.
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 is up to date with UK b12 guidelines.
"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.
Neuro Consequences of b12 Deficiency
Is GP aware of potential neuro consequences of b12 deficiency? Under treatment could lead to further deterioration including spinal problems.
"I have told him about my family history but he seems to think that is not really important"
I found that putting important info, queries about diagnosis/treatment etc was more effective when in a letter to GP. in UK, my understanding is that letters to GP are filed with medical records so are harder to ignore.
Unhappy with treatment (UK info)?
Letters to GPs about B12 deficiency.
Link contains letter templates. Point 1 is about under treatment of b12 deficiency with neuro symptoms.
I also think that before tackling GPs about difficult issues then it's probably worth getting a complete set of medical records/test results. Can be very interesting to see what has been written by doctors in the past.
Thanks for all the info. I am seeing neurologist tomorrow comerain snow or high water saw her last year and she organised MRI scans with contrast brain and spinal.nerve conduction tests and has set me up with appt at Neurosciences Lab at John Radcliffe Oxford next week.She did training there and wants their opinion.will ask her to refer me to haematologist at her hospital so she gets results quickly.She has ruled out vasculitis which is good news and I have stopped supplementing B12 orally on her advice in case J R want to do blood tests.Should I get MMS and Homocysteine tests done GPsaid no but can go privately.Am writing down all symptoms and will send copy to my GP.Any advice on sudden onset of migraine symptoms and vertigo and proprioception very scary!
"I have stopped supplementing B12 orally on her advice in case J R want to do blood tests."
Do you mean you have not been receiving b12 injections at all?
"Should I get MMS and Homocysteine tests done"
MMA, Homocysteine, Active B12 tests are likely to be affected by recent B12 supplementation. If JR tests your serum b12 that may well be affected by recent B12 supplementation. See links below.
Good luck with appt. I'd suggets reading at least BSH guideline sand BMJ article before you go.. See useful summary in third pinned post. I saw several neuros and only one of them contemplated that I might have B12 deficiency.
Update on yesterdays appt with neurologist definitely have neuropathy and lack of balance and co-ordination are part of it,but she didnt think the vertigo and sight disturbancies were anything to do with B12 deficiency!
I do have Injections every 12 weeks and am due one now but will wait until I have been to the Neuroscience Laboratory at Oxford as they may do tests themselves.My neurologist was hoping I had already been to see them but I had to find someone to drive and come with me as my vertigo can seriously interfere with my driving.Will take lots of symptom details with me{written ones} and will push the B12 problem as I have a sister and 3 nieces with the same problem and definitely my mother and her mother suffered with it also.Have stopped oral supplements until I have been to Oxford in case they do a blood test,will see what they come up with but will go down the SI route anyway if my GP won't play ball. Will let you know and again thanks for the information.Will have a briefcase full of print=offs!
Did neurologist check your proprioception sense? Tests for proprioception often require closed eyes so if you didn't have any neuro tests with eyes closed it's possible that your proprioception sense was not checked.
Did neurologist do Romberg test (eyes closed ) or heel to toe walking with eyes closed? I hope Neuroscience Laboratory at Oxford will consider checking proprioception.
Might be worth contacting PAS (Pernicious Anaemia Society)and asking about vertigo symptoms in PA and B12 deficiency.
Supplementing B12 before diagnostic tests
It's possible that Neuroscience Lab might consider doing further blood tests for B12 deficiency such as MMA, Homocysteine and Active B12 (holotranscobalamin). Results of all of these might be influenced by recent b12 supplementation whether it's oral tablets, injections etc.
Hopefully lab will take into account any B12 treatment when interpreting results of B12, Active b12, MMA and Homocysteine tests.
Some people on forum have had tests for MTHFR gene mutations. I have read that there may be association between two MTHFR gene mutation patterns and high homocysteine levels.
I believe the following B12 books mention vertigo and loss of balance. Might be worth trying to get hold of copies before next appts. May be available from local library.
Could It Be B12? - An Epidemic of Misdiagnoses
Sally M. Pacholok R.N. and Dr. Jeffrey J. Stuart
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency
Martyn Hooper
"she didnt think the vertigo and sight disturbancies were anything to do with B12 deficiency!"
My understanding (I'm not medically trained) is that B12 deficiency can cause both sight disturbancies and vertigo and loss of balance.
If you put "vertigo" or "proprioception" or "sight disturbances" in PAS search box at top of screen , there may be other posts on this forum that are relevant.
Was neurologist aware of neuro consequences of B12 deficiency eg SACD, see my second post above?
"Will have a briefcase full of print=offs!"
My experience is that sometimes doctors are unable or unwilling to read lots of extra info so might be worth trying to condense info in some way.
"have Injections every 12 weeks and am due one now but will wait until I have been to the Neuroscience Laboratory at Oxford as they may do tests themselves"
Might be wise to get GP's advice before delaying your NHS injection due to risk of symptoms deteriorating. Doctors should take any b12 treatment you are receiving into consideration when interpreting blood test results.
I think BSH Cobalamin and Folate Guideline suggests that retesting of serum B12 levels is not necessary after treatment has started. See summary of b12 documents in third pinned post for more info.
Why are they only giving you injections every 12 weeks? Did neurologist discuss this with you?
With neuro symptoms eg balance issues surely you should be on the neurological treatment regime which is a B12 loading jab every other day for as long as symptoms get better then a jab every 2 months? See BNF and BSH Guidelines link above.
Thought I would let you know how meeting with neurologist at John Radcliffe Hospital went.A work colleague who owed me a favour drove me as vertigo strikes when it feels like it.He dropped me at the door and left me to it.Had to have another nerve conduction test done first then went to see neurologist.Did considerable amount of tests including Romberg which was a bit scarey.Was told well at least I was managing to rebalance myself!Yes I definitely have neuropathy but he did not think it was anything to do with B12 and vasculitis had already been dismissed.Apparently it is an idiopathic cause as I am over 70 years old!! Did tell him about family history of B12 deficiency and Pernicious anaemia and asked him to contact my GP and ask if he will increase my B12 injections as I feel it is not going to harm me and I need to find out if it will ease my symptoms.He did send me for 8 different bloods which were done there and results should go direct to my GP. Still feel I have achieved very little so will be ordering B12 injections and go the SI route.Do you think PA would help I am a member but really don't know where to go from here?
"Apparently it is an idiopathic cause as I am over 70 years old!"
I think a lot of things are put down to age when there is a possible explanation although to be fair to neurologist, I have read that chances of neuropathy increase as people age.
I have read that B12 injections are sometimes prescribed as treatment for neuropathy.
UK podiatrists with right training are allowed to prescribe B12 for people with neuropathy in feet. Often this is linked to damage from diabetes, but PA and other causes of b12 deficiency can lead to neuropathy in feet.
I think B12 injections have been prescribed for people with post herpetic neuralgia (from shingles) in the past but I'm not sure if that still happens.
"Did tell him about family history of B12 deficiency and Pernicious anaemia and asked him to contact my GP and ask if he will increase my B12 injections"
Some forum members have put important info such family medical history, symptoms, extracts from relevant UK b12 documents, questions that need to be answered, in letters to specialists/GPs.
My understanding is that in UK, letters addressed to GPs and specialist doctors are filed with medical notes so are evidence of issues being raised. I think it's a good idea to keep copies of any letters written in case doctors lose their copy. I used to include a request in any letter to place a copy in medical files.
I think that sometimes things said in a consultation may get forgotten or there may not be time to discuss matters fully.
"He did send me for 8 different bloods"
Do you know what tests he ordered? Hopefully GP will be sent a copy of results and you can access a copy via GP surgery. MIght also be worth contacting neurologist's PA and asking if you can be sent a copy of any letter neuro sends to your GP.
"Do you think PAS would help I am a member but really don't know where to go from here"
At very least, I hope they would be able to pass on useful info. There are posts on Martyn Hooper's blog about people seeking diagnosis and how PAS has given support.
Best way to contact PAS is probably by telephone. Messages can be left as there is an answerphone. It may take several days to get a response. Worth mentioning to PAS "family history of B12 deficiency and Pernicious anaemia".
Think they use a network of specialists across UK to give second opinions on treatment and diagnoses. They are quick to respond to enquiries and will probably ask for a complete medical history.
Might be worth putting your update on a new thread along with a link to this thread as new posts on older threads sometimes get missed. You might get responses from more people that way.
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Would really appreciate some help
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