Finally, a neurology referral…after 8 years

[RoseFlowerDew]

After 8 years of symptoms and poor management of symptoms finally a referral to neurologist was mentioned. Because of the way things work I won’t believe it until I receive the appointment and actually have it as so often referrals are mentioned but don’t happen. However my symptoms have started including fitting at night which doesn’t normally get mentioned with PA. I was having breathless with chest pain at night which was investigated by cardiologists for a year to no avail but cleared up once injections moved from 3 months to 2 months. But as I have fits now I have decided to see a neurologist privately and I was wondering if anyone has seen a neurologist and is there anything I should know or could take to the appointment to help?

[Nackapan]

Yrs ive seen 3. Take anything you have.

Even the NHS one didnt have have my notes?? Or recent MRI repirt at the time.

I took the brain MRI report.

Get a copy of the referral letter.

I was amazed how little on mine

In my experience neurologists

rule out tumours Ms ect .

I expect an Mri will be requested .

My reflrxes were tested by one.

They excluded alot but gave no answer's to what I'm left with .

Well all 3 had different theories but no solutions.

Amitriptyline seens to be offered alot I think to calm the brain and in my cases an attempt to control migraines.

Propranolol another used alot.

I woukd read up on anticonvulsant drugs too.

Good you are bring seen.

I've read ( csnt think where) of a Newborn baby fitting) cured by b12 injections.

So if no other causes found look to upping your b12 .

I'm 3 years in . Not on any drugs apart from otc pain killers . Antibiotics if needed.

I dud trial some drugs.

I woukd also take a drug if it worked for me.

So make a list.

Think what you to walk away with ftom consultation.

Don't be rushed.

Don't expect b12 expertise!

Very very hard bot to raise expectations.

Hope you get help. T C

[Sleepybunny]

Hi,

I hope your appointment with neurologist goes well.

As Nackapan says, don't expect B12 expertise from them but fingers crossed you'll get one who understands it.

Misconceptions about B12 deficiency

B12 article from Mayo Clinic in US

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

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

Misconceptions about a B12 deficiency

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

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

PAS website has a page for health professionals that your GP and neurologist might find interesting

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has some useful leaflets/articles

pernicious-anaemia-society....

Articles that mention B12 deficiency and seizures

(there may be some details that could be upsetting)

pubmed.ncbi.nlm.nih.gov/171...

pubmed.ncbi.nlm.nih.gov/194...

onlinelibrary.wiley.com/doi...

There have been studies that suggest some anti epileptic drugs may affect levels of B12 and folate

onlinelibrary.wiley.com/doi...

Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg causes and symptoms of B12 deficiency, B12 books, B12 websites, UK B12 guidelines, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

I hope you get the help and treatment you need.

[VellBlue]

Good luck with the neurologist. 🌼

I had a friend who had both epileptic seizures and non-epileptic seizures. I remember one time she tried to go vegan or vegetarian and her seizures got a lot worse. I do wonder now whether B12 was a factor.

Anyway, it's important your fits are properly investigated and if you are unsatisfied remember you have the right to a second opinion. All the best.

[Litatamon]

I hate to be a downer. But after waiting a long time to see a neurologist he told me two things -

*he doesn't see b12 patients in his practice much.

Of course he doesn't, they are far too busy masquerading as his MS, dementia and trigeminal neuralgia patients.

And the best -

*He told a doctor shadowing him she has pernicious anemia, she should eat more meat.

I kid you not.

May you find a better outcome. I just think it is important to not think they are necessarily better than GPs with b12 deficiency.

All the best. Sincerely hope you find a good one.

[RoseFlowerDew]

Thank you everyone who replied. Especially for the point about being clear of what I hope to understand from a neurologist. The appointment was, as forewarned, disappointing

I am now more worried rather than less as there is now a possibility that my positive GPC antibody with low B12 diagnosis will be renamed from autoimmune B12 deficiency to Functional Neurological Disorder and have B12 therapy withdrawn.

[VellBlue in reply to RoseFlowerDew]

Really sorry to hear that. Surely GPC antibodies are a strong indicator of PA, along with your low initial B12 levels and your positive response to injections, not sure how that can be dismissed. You can always seek a second opinion, right? Be really clear with your GP how much your B12 injections alleviate your symptoms (and emphasise the low B12 and GPC antibodies), but know that if they do withdraw it you can always take care of yourself by buying the ampoules online.

The fitting doesn't fit with PA, so you may also have something else going on, but if you have the tangible experience that the B12 injections prevent many of your symptoms, then given your GPC antibodies and low initial B12, I don't see how they can suggest you don't have PA and withdraw injections.

[RoseFlowerDew in reply to VellBlue]

Hi VellBlue,Thank-you, I agree. I do think you are right that positive anti-GPC with low B12 and positive response to hydroxycobalmin injections would be indicative of PA. I have been desperately trying to find the original results so that I can ensure that the treatment isn’t removed but sadly I can only find my positive antiGPC where the reason for the blood test is low b12! I am concerned because I know when I ask my doctor to check my records she can not find them so I can’t provide proof my B12 was 88. I must admit I never knew that I would have to protect my own medical records when I was so unwell!

Yes I can, thankfully, ensure I have B12 but for me it’s more a point that every medical decision both now and in the future is based on poor records and mistaken medical history. Fitting doesn’t fit normally (except for the interesting links to case studies very kindly provided above). I know my nighttime central chest pain with severe breathlessness with headache resolved once B12 was upped from 12 weeks to 8 weeks. I guess that the homocysteine levels improved for both my heart and brain. But if I am having cerebellum or other subclinical brain damage because of continuing demyelination then I want to do all I can to have it treated but also noted so I get correct treatment. I know though, through my poor experience of APS, that symptom thresholds are being changed before diagnosis and treatment is provided and it’s alarming that, rather than consider evidence of symptom improvement with hydroxycobalmin, a doctor can say it’s something else….like conversion aka FND.

[VellBlue in reply to RoseFlowerDew]

It's a real shame the neurologist dismissed the evidence of the parietal cell antibodies test and gave you a diagnosis which doesn't help in any way. I'd say just emphasise to your GP how much the B12 is helping you and the result of the PCA test and that you were given that test because of low B12.

Have you had the intrinsic factor antibody test? It only comes positive in 50% of case of PA, but if it does come positive it is very clear the diagnosis is PA. The GPCA test is less specific, if it comes back positive it could be due to other things, not necessarily PA. This may help persuade your doctor.

B12 injections are supportive in a range of neurological conditions. So even if they have decided you have FND, if B12 is alleviating the symptoms, why should they discontinue it?

Good luck. Take care. Hopefully we will have a better understanding of B12 deficiency and treatment one day, so we are no longer subject to this kind of thing.🌼😊

[RoseFlowerDew in reply to VellBlue]

Hi VellBlue,

IF test was negative when GPC was positive despite of neurological features but 5 years later all my antibody tests including ANCA, lupus anticoagulant etc etc are negative in the presence of Vitamin D deficiency.

Yes you too! Take care and fingers crossed re B12 knowledge improving.

[VellBlue in reply to RoseFlowerDew]

😊👍

My friend had Non Epileptic Attack Disorder, but it looks like that has now been included into FND. Perhaps that diagnosis was given to you mainly due to the presence of the seizures. Maybe when speaking to your GP you can separate out the B12 deficiency issues (which to you have always been due to B12 and have been alleviated with B12) and the functional seizures, which may be FND or something else.