Has anyone ever tired the Romberg test. I was reading up on abnormal gaits etc and came across this test. I tried it and failed miserable on the tandem part. When I read Martin hooper's book he was saying about people bumping into door frames and not being able to walk in the dark (me). I'm intrigued.
Romberg test: Has anyone ever tired the... - Pernicious Anaemi...
Romberg test
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Bates2587
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Yes I've heard of it and also was bumping into door frame and walking like a drunk. I found vestibular cawthorne pysio helped .
Neurologists often uses the test
Do you think it's a dam that's bad if you fail this test or if you tried this with average person they would also fail it? My sister said she failed walking in a straight line with her eyes open😜
Yes. My GP tried this, including giving me a little nudge, when I was first diagnosed with PA. I passed it comfortably.
About 6 months later I went to see him with numbness and tingling in my feet. He did the Romberg test again and I started to fall after a few seconds.
Another four months and my neurologist tried it. As soon as I closed my eyes i fell backwards. And that's what I'm like now.
I joined Ataxia UK and got my 'get out of drunk free' card from them...
Ataxia UK
Hi,
"not being able to walk in the dark (me)"
Has your doctor or a neurologist tested your proprioception sense?
This is awareness of where your body is in space. Think it is also called position sense.
My balance deteriorated when it was dark, my eyes were closed or my view of my surroundings was blocked. I used to fall off the pavement when someone walked directly towards me and I couldn't see ahead.
For anyone reading this thread, please contact your doctor if you think you need a Romberg test.
Due to the risks from losing balance, I think Romberg test should only be done by a doctor at medical premises.
Another test that can help to check balance/proprioception is walking heel to toe with eyes open then repeating same test with eyes closed. Again, should only be done by a doctor at medical premises.
Videos of these tests on Youtube.
When my cat or my kids wake me up in the night. I always thought I stubble around and can't walk straight because Im not quite awake and I'm tripping over all the toys or the cat. Now Im intrigued . Not something you think to try is it.
Have you seen a neurologist?
No, I don't suspect PA. I have been researching b12 deficiency and testing myself to get answers for my 8 year old daughter. I have potential symptoms but I think of them as mild if any. Breathlessness and very forgetful. I did go to my gp a few years ago for the pins and needles in my hands and feet. She said don't worry it's stress. She put me on antidepressants for anxiety. It worked to chill me out but I still have mild constant tingling even now. I'm more concerned for my daughter who is very lathargic and withdrawn. Her b12 was 115ng. I'm kinda hoping my private Mma test comes back bad so I can build a case for my daughter. My b12 was 315 and my active b12 was 55pmol so no real answer. She has only been aloud loading jabs. My 5 year old has b12 of 239ng and ferritin of 23 so eventhough I worry for her she doesn't have obvious symptoms and gp is happy for her.
I have proprioception problems because of large fibre neuropathy caused by b12 deficiency. I failed the testing, I am unable to balance in the dark.
I've written some very detailed replies on other threads with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.
See links below.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Thank you. I will look at it. It's really does fuel my anxiety all this. My eldest said her lower legs have been hurting since she started school on monday. Part of me thinks of course they ache because you've been doing the daily mile after not having moved much for weeks. Then the other half of me goes oh jeez is this damage to her nerves.
I'm sorry to read about your anxiety.
B12 deficiency can have a huge impact on mental health...anxiety can be a symptom of B12 deficiency.
B12 and mental health
b12deficiency.info/b12-and-...
The sad thing is that some doctors say unhelpful things to parents who are justifiably concerned about their children having B12 deficiency.
"I have potential symptoms"
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
"No, I don't suspect PA"
Do you mind me asking why you don't think it's PA?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
I hope you get the answers you need.
So what I meant by saying I don't suspect PA in particular for me but except it as a possibility. I'm testing myself as a way of identifying causes of my daughters low b12. I breastfeed both my daughters (for years) so I do wonder if the nutritional value of my breast milk might have been rubbish. Also I have to rule of myself not having a proper b12 deficiency otherwise I will continue to worry about minor symptoms for years to come. Also my nan having Alzeimers as also makes me think that correcting even a low 'normal' b12 level would be a good idea for me. My memory is already pretty poor and they get annoyed with my dopey behaviour at work. My nans b12 test result came back as normal today. I told them to get a copy to see how normal it is. Since she been a vegetarian most of her life. Now 90. Could supplements be with a try or are they too slow to help her manage her symptoms (Alzeimers symptoms). I realise that it wouldn't cure her but improve her quality of life potentially?
Hi,
On another thread you mentioned you had a relative with PA.
Having a blood relative with PA could increase a person's chances of developing it.
PA can run in families and it is possible to have juvenile PA.
Does your daughter's doctor know that there is a relative with PA?
Some doctors may think of PA as being an older person's disease.
PAS website has articles on juvenile PA.
If interested, see page 2 of articles in link below.
pernicious-anaemia-society....
There are case histories of children with b12 deficiency in all these books.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in this book is out of date. See BNF links below for up to date info.
Did you know that there is a separate BNF for Children?
BNF Hydroxycobalamin - adults
bnf.nice.org.uk/drug/hydrox...
BNF Hydroxycobalamin -children
bnfc.nice.org.uk/drug/hydro...
"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 (US 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".
Yes I did tell my daughters consultant that my grandad has PA. He wasn't interested (I bet he thought he's old of course he has). I do have could it be B12 the original and the pediatric version. I also have 2 of Martin hooper's book. I'm a member of the PAS now. I sent Martin's book to both my dad and my grandparents. My grandad loves the book. I also sent Dr chandys book to my aunt.
I kind of treating this like preparation for a court case. I'm testing myself and awaiting results. When it's time to she my daughters consultant I hope that I can fight her corner and present the fact to him and her gp. I feel like if I get this wrong this time my won't get any further injections. I feel like it my be worth testing her for coeliac disease in the meantime though?
Hi,
"I feel like it my be worth testing her for coeliac disease in the meantime though? "
Have a look at these guidelines below which say when to test for coeliac.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
May also worth contacting Coeliac UK...they have a helpline number.
You might find it helpful to get all her medical records/test results now if you feel that it may come to legal proceedings in the future.
Accessing Health Records (England)
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
patients-association.org.uk...
"Yes I did tell my daughters consultant that my grandad has PA"
Have you considered putting the information about your grandad into a letter to your daughter's consultant and have you considered asking for her to be tested for PA in writing?
If the doctors say that PA does not affect young children (it can do) you could then pass on PAS info about juvenile PA.
I believe Martyn Hooper , chair person of PAS has tried to assist PAS members with children who are showing symptoms of PA.
It can take years to get a PA diagnosis and I suggest you contact PAS and ask about what info on PA in children would be best to pass on to GPs/specialist doctors.
Putting things into writing makes it harder for the doctors to ignore and provides a paper trail if there is need for a complaint in future.
Writing letters can irritate some doctors.
More about letters
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice etc sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case it is needed in future.
CAB NHS Complaints
citizensadvice.org.uk/healt...
She was automatically tested by the laboratory because her b12 was below range. They came back negative (but the lab form did say that this test won't rule out PA). Because she is not aneamic or macrocytic (although she is iron deficient and the prescribed her ferrous sulphate). They don't consider her b12 deficiency severe.... I do.
I tried the access our records but the surgery sent me a message saying that the due to the current restrictions I'm unable to access the medical records right now. I can log in to order my prescription but not to see medical notes. I already sent ID they asked for but I'm not sure what these restrictions are?
Hi,
"surgery sent me a message saying that the due to the current restrictions I'm unable to access the medical records right now"
My understanding is that you can request paper copies of medical records as well as accessing digital records. I suggest putting any request for access to medical records into a written letter to practice manager.
Worth asking them to acknowledge receipt of any such request and keep any acknowledgement and copies of request letter.
There is a set time limit as to how long the GP practice or hospital etc can leave it before responding to a request of this nature. This statutory time limit applies even during pandemic.
Scroll down page in this next link and see section headed "COVID-19 FAQs: IG professionals"
nhsx.nhs.uk/information-gov...
I think the info in first question in that section may be of interest.
If GP surgery has said they cannot give you access to records now they should tell you in writing when they expect to be able to give you access.
I suspect that they should allow access now but due to pressures of pandemic they do not see it as a priority.
Have you looked at links about GDPR legislation?
BMA article about accessing health records
bma.org.uk/media/1868/bma-a...
CAB article about accessing medical records
citizensadvice.org.uk/healt...
ICO (Information Commisioner's Office)
Right to get copies of your data
ico.org.uk/your-data-matter...
Preparing a SAR (Subject Access Request)
ico.org.uk/your-data-matter...
NHS Guidance on SAR
nhsx.nhs.uk/information-gov...
This link mentions that organisations may take longer than normal to respond to SAR requests during pandemic.
"but I'm not sure what these restrictions are? "
You could ask in a letter to GP practice manager for an explanation of these restrictions although this might irritate GPs.
You could contact your local CCG and ask what the restrictions are and if GP surgery is permitted to delay your access to your and your child's medical records.
If you're in England you could contact NHS England and ask if GP surgery is permitted to delay access.
Taking things further and involving other bodies such as CCG and NHS England may sour GP/patient (or parent of patient) relationship.
Your local MP may be able to help find out if the GP surgery is allowed to delay access to medical records.
GPs are allowed to refuse access to medical records if they feel that to allow access could cause harm to the patient.
I'm in Gloucester too so I'm sure it will be a battle. I did speak to Pals at one point because I was worried the the referral was taking a long time. She was a nice lady at PALS but she didn't side with me as she had aslo had had low b12 loading injections and was happy with her treatment. She recommended a vitamin complex my daughter could take for energy. She wasn't thinking injections were a good idea for a child either so she was sympathetic towards the Gp not wanting to do loading injections. She did offer to speak with the surgery manager if I have any further issues. At that stage my daughter was attempting to escape from school multiple times and often being looked after in separate areas. She is now on the SEN register. I have been saying something hasn't been right for my daughter since she was about 3 years old but until now it hasn't been bad enough for them to do something about it. When she was in year 1 she used to fall asleep in class which I thought was pretty bad. Last year she use to sit underneath the desks and cover her ears. She had auditory hallucinations and said farm animals and bombs going off. She saw bubbles and squiggles and colours in her vision (her eyes are fine, the opticians said its just something unique about her).
"She saw bubbles and squiggles and colours in her vision"
Some people on this forum have reported migraine as a symptom of b12 deficiency which can cause visual effects. A few have reported visual snow including myself. This is like TV static in the visual field.
I had some auditory symptoms although these are much improved. These included tinntius and extreme sound sensitivity.
"I'm in Gloucester too so I'm sure it will be a battle"
I'm afraid my heart sank when I read that you're in Gloucestershire.
Blog post about updated Gloucestershire guidelines
b12deficiency.info/blog/202...
Older Gloucestershire guidelines which some GPs may still be using.
gloshospitals.nhs.uk/our-se...
Is there any chance of your daughter seeing another specialist/GP privately although this is no guarantee of better treatment? I wasted a lot of money on private appointments.
Perhaps you could talk to PAS and B12 deficiency Info again?
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Unfortunately they are not taking on any cases at moment but perhaps they can help in future? I have read mixed reports about this charity.
Tracey witty also sent some letters to the Gp and this they said they could not listen to her advice because she wasn't a medical professional. I think the Gp said she had contacted another consultant for advice and he had said her b12 levels were not of major concern so she was reassured buy this. Her gp has admitted that she doesn't know much about B12 but that she had seen some papers suggesting b12 injections aren't good (🤷♀️)
"Her gp has admitted that she doesn't know much about B12 "
Perhaps your GP would be interested in joining PAS as an associate member. It is free for health professionals.
PAS website has a section for health professionals.
pernicious-anaemia-society....
Have you contacted PAS and asked if they can suggest research papers on juvenile PA that you could pass onto her specialist and GP?
It might even be possible at some point to arrange for her GP to speak to PAS but you would have to liaise with PAS first to see if this is possible.
That does sound like a good idea. I could do with a vitness/support with the gp. My partner is not convinced that my daughters b12 is a big problem either. He won't read up on it. To be honest as much as I read and understand this b12 deficiency my memory is terrible and forget what I'm talking about mid sentence so I think I probably come across as stupid to the consultant. So paper work would help me. Could do with a printer.
"Her gp has admitted that she doesn't know much about B12 but that she had seen some papers suggesting b12 injections aren't good"
Perhaps you can ask GP politely to tell you more about those papers she has seen.
It's much easier to fight against what you know than what you don't know in my opinion.
There has been research in the past that suggested some types of cancer were associated with high levels of B12 in the blood.
This unfortunately led to misunderstandings in some health professionals that high levels of B12 in the blood were potentially toxic in some way.
People who are treated with b12 injections often have high levels of B12 in their blood.
See Point 6 in articles below about Misconceptions about B12 deficiency.
stichtingb12tekort.nl/engli...
I am not medically trained or a scientist so please check things for yourself.
I also wondered if it was worth you pursuing the possibility of a diagnosis of PA and/or Coeliac disease for yourself as perhaps this might help your daughter?
"Because she is not aneamic or macrocytic "
Apologies if I've given you these links before..
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
See table 1 in above link.
NICE CKS Symptoms of b12 and folate deficiency
cks.nice.org.uk/topics/anae...
If you look in the first section, the 4th or 5th point says that symptoms of b12 deficiency can happen without anaemia.
Most GPs/specialists will respect NICE Clinical Knowledge Summary so might be a good one to pass onto them.
Misconceptions about b12 deficiency (from Dutch B12 website)
stichtingb12tekort.nl/engli...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Have a good read of this page below which has lots of useful links to B12 info.
b12deficiency.info/b12-writ...
See Point 12 about macrocytosis.
Hi,
Link to PAS summer 2020 newsletter
pernicious-anaemia-society....
Might have something of interest.
"I think I probably come across as stupid to the consultant"
I wondered if the consultant is aware of your own health issues.
I would expect a consultant to want to know about health issues among blood relatives.
NHS link about diagnosis of B12 deficiency
nhs.uk/conditions/vitamin-b...
An explanation in simple language about how a diagnosis of b12 deficiency is made.
It says that people can have problems with B12 levels that are normal range.
On the Overview page , it says that people can have symptoms without having anaemia.
"I could do with a vitness/support with the gp"
Do you have a relative or good friend who is supportive who could go with you once pandemic restrictions allow?
Personally I would be wary of taking anyone with me to an appt who is not supportive.
My impression is that GPs and specialists are much kinder if there is a witness present. Can also be useful to have someone to take notes or to ask questions if brain is foggy.
NHS Complaints Advocacy
If at some point in the future you decide to make a formal complaint, might be worth considering using an advocate . See link below.
citizensadvice.org.uk/healt...
NICE CKS link about causes of B12 deficiency
cks.nice.org.uk/topics/anae...
This might be worth passing onto GP as they should respect NICE Clinical Knowledge Summary.
"Her gp has admitted that she doesn't know much about B12 "
I gave my GPs a copy of Martyn Hooper's book
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
If anyone considers doing this, I suggest including a note in the book that BNF (British National Formulary) treatment has changed since book was published.
And finally apologies for bombarding you with so much information.
I was ill for so many years with untreated b12 deficiency and I had multiple neurological symptoms. Knowing more early on when symptoms started to develop might have meant fewer years suffering.
I also gave my GP a copy of Martyn's book (signed). He passed it around the rest of the practise.
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