Fed up. What a waste of time that was !!

[Mavis15]

Extremely fed up and upset. Saw a neurologist today who I suppose did reassure me by saying I had no permanent nerve damage but completely opposed to having more frequent injections to treat my tingling and numb hands and feet. Despite me saying that they do help with my symptoms.He actually said that three monthly injections were sufficient . (I do at least get them eight weekly) I feel I need them weekly at the moment so will have to resort to giving them myself now as what else can I do. The neurologist also didn't feel a need to look for further causes so what was the point. I knew it would be a waste of time and money ( private appointment on husbands medical insurance). Feeling frustrated because I knew trying to fight my cause was a complete waste of time. Feel like crying. Not feeling great at the moment either. ☹️

[AngelaJG]

so sorry to hear

[Foggyme Administrator]

Hi Mavis15. So sorry to hear this but not at all surprised.

I have also had the 'no more B12 needed' from a consultant neurologist and consultant gastrologist. From the conversations I had, the questions I asked, and the answers they gave, it was clear that they had no idea at all about B12 deficiency (or PA).

I know how demoralising, humiliating and downright insulting it is to have people like this talk down to you and refuse to address your concerns.

I deal with this by refusing to be beaten, by becoming my own expert, and by refusing to accept that what they say is correct (the people here have educated me well 😀).

So now I self-inject additional B12, it's very easy, and I'll continue to do this unless or until somebody identifies some other condition.

I' be interested to know if you had an MRI scan of your head and spine, together with nerve conduction tests? As you still have neurological symptoms, these test should have been undertaken in order to come to the conclusion that you have 'no permenant damage'. If all the tests were negative, then that's good 'cause there's nothing else going on (at least in the neurological department)!

With respect to looking for other causes, whilst the neurologist may not want to, it doesn't stop you from looking. I'm doing the 'rounds'...Gastrology, neurology, endocrinology....and probably a few more 'ologies' to go 😀.

I know my body is not working so if, as these consultants say, B12 is not the problem, I'll use their comments to get my GP to refer me elsewhere (lots of elsewhere's) until an answer is found.

And in the meantime, I'll keep on taking my life saving energy giving not at all dangerous B12 💉💉😀.

Take care and good luck. Let us know how you get on x

[Mavis15 in reply to Foggyme]

Thank you so much for your reply. Made me feel a lot better. Exactly my thoughts too but so well written. How does he know I don't have permanent nerve damage by just doing a few simple sensation tests? Any way will have an injection today at some point so sure that it will make me feel better even though it's not Hydroxocobalamin only Cyano. Thanks again. It's so nice to know there's people who understand and can empathise.x

[Foggyme Administrator in reply to Mavis15]

Hello again Mavis15...I'm just wondering why you are having cyanocobalamin....but perhaps you're not in the UK?

Just a thought...if you saw a neurologist under your husbands private medical insurance, if you're in the UK it might be worth asking your GP to refer you to an NHS neurologist for an MRI scan of your head and spine and nerve conduction tests....if you have been B12 deficiency for a long time, it would be good to rule out subacute combined degeneration of the spinal cord and other neurological causes for your symptoms.

Or perhaps, if you live elsewhere, there's another public health care system you can access?

And are you also taking care of your cofactors (folate, magnesium, iron, potassium, Bcomplex vitamins etc...as low (or indeed high) levels of these can either make you feel ill or effect the proper uptake of B12...just a thought and you can post again if you need more advice about this.

I'm so pleased that my reply made you feel better, and thank you for saying so...I always feel that the few words any of us are able to write are so little when people are feeling so ill or low. It would be so good if we could do more!

Take very good care and don't forget, there's a whole tribe of deficients here who can offer support and advice if and when needed. X

[gillsie in reply to Mavis15]

I had exactly the same response from a neuro at bristol spire. Did me no good at all. I kept badgering gp and get the jabs monthly for now but always up for reviw and she is abou to retire. Most of us have to take supplements. So depressing is this repeated scenario. Hang in there. X

[Bobonut in reply to Foggyme]

Brilliant Foggyme . An inspiration.

[Foggyme Administrator in reply to Bobonut]

Why thank you Bobonut. Though I have to confess that some days it's 1% inspiration and 99% expiration 😀😀.

Onwards, I say, and perhaps vigour will follow!

Take care X

[Sleepybunny]

"How does he know I don't have permanent nerve damage by just doing a few simple sensation tests?"

Do you have balance issues?

Did he do a romberg test?

en.wikipedia.org/wiki/Rombe...

Did he ask you to walk heel to toe with your eyes closed? This tests for proprioception difficulties that can occur in someone with b12 deficiency.

Link to old HU thread about proprioception.

healthunlocked.com/pasoc/po...

If not can you get a second opinion? If you are in UK, the HDA patient care trust may be able to help. They are a charity that offers free second opinions on medical diagnosis and treatment.

hdapatientcaretrust.com/

HDApct tel no 0207 935 8366

Subacute combined degeneration of the spinal cord

There is an article about this in PAS library section. Think its only available to members.

pernicious-anaemia-society....

It's also mentioned in following books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper and "Could it Be B12" by Sally Pacholok and JJ. Stuart

I am not a medic just a perosn who has struggled to get a diagnosis.

My experience of neurologists was that not one of them and I have seen several, asked me to do any neurological tests with my eyes closed even though I had given all of them lists of my symptoms many of which are typical of b12 deficiency.

[Mavis15 in reply to Sleepybunny]

Thanks for your reply. Have Martyn's book but not finished it yet. Think I began to feel normal at one time after a few injections and lost interest !! Will definitely read it again.

The more I think of his neurological examination the more I think it wasn't very thorough!!

My GP referred me to find out if there was another reason for my symptoms and he wasn't interested really .

Thanks again for your helpful response.

[Mavis15]

Ps will look at article. I am a member.

[sirlam]

Hi. I totally agree with Foggyme. I was really excited at seeing a neurologist! What a waste of time. He did a few reflexes, criticised me for self-injecting, then told me to stop and have my bloods done. When asked what the bloods were for, he had nothing to say. he was just ticking a box. Absolutely clueless!! I will continue to SI and read everything I can lay my hand on. I may not get it completely right but I’m going to do better than I would under my GP Good luck and keep fighting! X

[Mavis15]

Thank you so much. How often do you self inject and have all your neuro signs gone?