Waiting to see a GP...

[ktwing]

Hi, I'm new here, it seems amazing, although there's a lot to digest!

I was diagnosed with MS earlier this year after suffering from really bad vertigo (which I also had in 2011) and not getting better at all quickly. MRI showed (fairly mild) lesions on my brain and spinal cord. I'm still really tired all the time, have tired and sore eyes and get headaches that seem related to this. I have tingling/numbness in my right side particularly, especially my arm, hand, legs and feet and what I think is neuropathic pain in my foot. I also had sensitivity to light and sound when I was at my worst, and get a strange nausea that almost feels like hunger.

I had unexplained really bad iron deficiency anaemia in 2013 (went for endoscopy and colonoscopy etc but no reasons found), and I asked about B12 as a possible cause then, but my GP said my level was normal. Now that I've done a bit of reading around, I'm fairly convinced I have B12 deficiency - my last B12 serum result in May was 176 pmol/L, which I now know is not normal when combined with my symptoms. I couldn't get an appointment with the doctor that I know to be nice and open minded until the 23rd October, so I've written to her explaining my situation.

I'm now thinking, maybe this is actually too urgent to wait until then. I've been having symptoms on and off for years. I suspect my daughters (aged 16 and 20) might also be deficient. Do people think I should just go and see whatever doctor I can get in the meantime?

Thank you

[Jennylind]

The question of how best to deal with GPs is a really difficult one. There are many stories on here of people's bad experiences with unknowledgeable and unhelpful GPs.

You have to consider the following, I think:

- will any GP at your practice be willing to accept you could be deficient if your results are within their 'normal' reference range?

- if only the one you have the appointment with is likely to, will they be less likely to be helpful if it means going against advice/action taken recently by one if their colleagues?

- have you considered what to do next if the GP is unsupportive? How do you feel about delaying that course of action?

It's incredibly frustrating to have to consider these kind of issues. I had ongoing symptoms similar to yours for years. This year I found out my B12 was low, did some research, and after an exasperating experience with the GP, started self-treatment. I have never felt better, but it's not nice to know that I'm operating 'outside' of medical acceptance or support.

Good luck!

[ktwing in reply to Jennylind]

Thank you! Since I wrote the post I actually got a phonecall from a practice secretary saying that the doctor has read my letter and would like me to come in for further acute bloods in advance of my appointment, which is something I guess! After reading 'Could it be B12?' by Sally Pacholok and JJ. Stuart I'm concerned that the tests being ordered might not be the best ones - but at least it's a start. I might take a note of the tests advised in that book with me and ask why not those if it isn't.

I have considered self-treatment if I don't have any luck going down the orthodox route, but as you say, it's a bit scary. Although not as scary as the thought of never being better or getting much worse!

[Sleepybunny]

Hi,

B12 deficiency is sometimes misdiagnosed as MS.

b12deficiency.info/misdiagn...

There is a chapter in "Could it Be B12" book by Sally Pacholok and JJ. Stuart about MS and B12 deficiency.

Other 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). Book is up to date with UK B12 guidelines.

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

Has several case studies.

SACD

There is an article on PAS website about SACD, Sub Acute Combined Degeneration of the Spinal Cord available to members.

pernicious-anaemia-society.... See Symptoms Section

PAS news item about neurological consequences of PA (Pernicious Anaemia).

pernicious-anaemia-society....

If you suspect PA (Pernicious Anaemia Society) is a possibility, it might be worth joining PAS.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 blogs (UK)

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

Also an interesting blog about B12 issues on B12 Deficiency Info website.

b12deficiency.info/

UK B12 documents

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BNF British National Formulary Chapter Section 1.2

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

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

Details of UK B12 treatment can also be found in BSH Cobalamin and Folate Guidelines.

Lots of B12 info in pinned posts on this forum.

I am not medically trained just someone who has struggled to get a diagnosis.

[ktwing in reply to Sleepybunny]

Thank you very much! Yes, it's after reading Sally Pacholok and JJ. Stuart's book that I've become more concerned about this possible misdiagnosis. As I've replied above, the doctor has ordered more bloods, so that is at least hopeful. I'll have a look at the resources you've given, thanks again.