Neuropathic symptoms have moved from left to right

[kontrolla]

I suddenly started getting lots of symptoms last December:

Numbness and tingling on whole left side

Muscle stiffness and weakness in left arm and leg

Loss of balance

Fatigue

Brain fog

Mood changes

Disorientation

Shortness of breath

Sensitivity to heat

Sensitivity to noise

Tinnitus

Double vision

I have got some family history as my Grandad had PA.

Had various blood tests which confirmed low b12 - 159 ng/l (191-663).

Test for PA antibodies was negative.

I then had 6 loading injections in January and am now on 3 monthly injections.

All the symptons above pretty much cleared up within a month or two of starting with the injections much to my relief.

However I have now got numbness, tingling, stiffness and weakness just in my right hand and it seems to be getting slowly worse.

I am right handed so this is causing difficulty with various things such as writing, carrying hot drinks etc.

I am confused by this development. Why have the neuropathic symptoms moved from my whole left side to just my right hand?

I have tried both patches and oral spray to keep my b12 levels up between injections but they do not seem to be helping with my right hand.

I am thinking of trying a multivit as well but I am not sure what to go for.

Has anyone experienced a similar issue? Does anyone have any suggestions of what else to try?

Any advice would be gratefully received.

[Hidden]

Hi kontrolla,

If I were you I'd go to GP and mention your right hand problems and also how much better you were after the loading doses of B12.

In principle if you have neurological problems when diagnosed with PA you should receive this treatment see:

patient.co.uk/doctor/pernic...

Management[2]

•For patients with neurological involvement, referral to a haematologist is recommended. Initial treatment is with hydroxocobalamin 1 mg on alternate days until there is no further improvement, after which 1 mg should be given every two months for life.[2]

So go back to GP, ask why you are not getting the above mentioned treatment after explaining your new symptoms and how much better you were initially seems to me the right thing to do, walk out the door mat at the surgery!

I hope this helps,

Kind regards,

Marre.

[kontrolla]

Hi Marre,

Thanks for the advice. I was already thinking of going back to the GP and I think your suggested approach is very good. I will get an appointment booked.

It did surprise me that the GP did not seem interested in how my symptoms were improving after the loading doses. They did another blood test which showed my b12 at 1683 ng/l (191-663). I got a phone call from the receptionist to say the test was OK and that was it. I knew then that they should continue until neuro symptoms stop improving but it seems they do not follow this methodology! From what the nurses have said I also get the impression that they stick with 3 monthly injections regardless of symptoms.

However having read some peoples experiences on here I do count myself lucky to have been diagnosed and treated within a month of the first appointment. The level of ignorance in the medical profession about proper treatment for b12d really is shocking.

Kind Regards

Kontrolla

[Hidden in reply to kontrolla]

Hi Kontrolla,

Wishing you good luck with your appointment! if your GP refuses to follow BNF guidelines for neurological involvement then your next step could be to ask for a referral to a haematologist, who will know more and should be of more help,

Kind regards,

Marre.

[kontrolla in reply to Hidden]

Hi Marre,

Been to the GP today and explained the situation as you suggested.

I was all ready to ask for a haematologist referral as you suggested but he quickly offered a neurologist referral and I thought that could be useful too.

So hopefully this will be a step forward.

Kind regards

Kontrolla

[Hidden in reply to kontrolla]

That seems very good! Marre.