Neurological symptoms

[Littledancingtiger]

Hi everyone bit of a long and complicated one but I’m really struggling.

I have had pernicious anaemia for 8 years. I had my loading doses and then went to 12 weekly. Asked for 8 weekly as I felt tired. I then found out I had Hashimotos disease a few years in and the fatigue was actually linked to that. I began treating it. All was well for a while. No symptoms of PA.

I have recurrent uti problems for which I’ve been on antibiotics a lot the past four years. In April this year I got what the hospital believed was peripheral neuropathy from Cephalexin. I presented with burning skin, electric shocks, pins and needles and numbness. I stopped the Cephalexin and it seemed to go away. When I needed to use antibiotics again I got stabbing pains. Again I stopped and the neuropathy symptoms went. However now I keep getting them.

It appears I present with neuropathy now after exercise at certain points in time. It is intermittent. My tongue also gets scalloped and burns at the end. I’ve also now developed muscle twitches. My eye has been twitching on and off for a month.

All the bloods they take seem to look fine and I manage my own thyroid, folate and Vit D levels which I get copies of and know I am optimal.

However my new surgery dropped me down to 12 weekly B12 injections around 18 months ago and I got a firm scolding for going early a couple of times off one of the nurses. I don’t know if my new neurological symptoms could be a result of the antibiotics depleting my B12 levels combined with less frequent injections over time causing this. I’m going to ask to see a neurologist but feel a bit stuck as if it is B12 how am I going to find out and I’ve already had a scalding off someone for going early? Could I try asking for a trial of more frequent injections off someone at my surgery - maybe try going round hoping someone agrees? My levels are always “high range” or over range now I’m on injections and no one seems to believe it could be linked but I’m not so sure.

Thoughts anyone?

[Katherine1234]

I have PA and amoxicillin always makes me a 100 times worse :0( I too have am hypothyroid, my adrenals have gone down and I have neuropathy. I have ended up self-injecting and when I am bad injecting every day. I would try to go gluten free with your scalloped and burning tongue Emily it can be linked to allergies.

[Littledancingtiger in reply to Katherine1234]

Should have mentioned gluten free for 3 years and quite careful with diet. When my nerves fire off my tongue seems to burn at the same time. Sorry to hear you have neuropathy too

[Annnon58]

Guidelines say injections every other day until no futher improvement with nurological symptoms. Few doctors follow the guidelines due to lack of training . Concider self injecting and sourcing your own supplies , . Good luck

[deniseinmilden in reply to Annnon58]

I agree completely.

[clivealive Forum Support]

Hi Littledancingtiger if you have P.A. and neurological symptoms the N.I.C.E guidelines say you may have injections every eight weeks instead of twelve.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

It may pay to ask to have your Folate level tested too.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Littledancingtiger]

I’m going to ring the surgery today as I’m now absolutely sick to my stomach and am finding it difficult to move around and function. I can’t believe we have to advocate over every single thing in this damn country and resort to self-medicating. I already manage my own thyroid problem and am sick to death of it.

[Littledancingtiger]

So I’ve just quoted their own guidelines at them on the phone said it is daft to see a neurologist before trying increasing my b12 levels. The levels don’t matter when on injections and I have to go in for a check up and a chat tomorrow about putting them back up to 8 weeks 🙄

[Callo56]

Hi Emily Jo, I found I needed injections more frequently than every 12 weeks and asked the practice nurse. She wasn't allowed to make that decision so I saw my GP. I took copies of the information Clivealive has directed you to and calmly asked my GP if he would read it, which he did and he gave me 8 weekly injections.

I'm lucky my GP is young and readily admits I know more than him about B12

He also thanked me for 'educating him'. I got what I needed and hopefully anyone else who goes to him with PA/B12 deficiency will get the appropriate treatment.

Good luck

[jaybirdxNHM]

I also printed NICE guidelines to GP by letter, no appointment . On 'phone managed to persuade him to give me 2nd loading dose but only 2 weeks worth, nurses bad tempered and dismissive. Next battle, getting 8 weekly jabs. And facing nurses! Neurological symptoms easing, hope they dont regress as they did before.My surgery is in special measures.

Good luck to you and every one battling to get correct treatment.

[Littledancingtiger]

I managed to get an appointment today and get my injection done. I wasn’t very nice about it and a bit awkward with her said I wasn’t leaving without one. However she wouldn’t even hear about doing loading doses again but has however agreed to 8 weekly as I appear to be “very sensitive”. I am a bit worried now that as I’m feeling so bad I do need the loading doses again but can’t really get anywhere with her. I have another appointment with a different GP Friday so may try my luck.

She said my level is “800” and that’s normal range. I tried to say but the level means nothing when I’m on injections? Also “normal” for me used to be 1500 or more so now it’s almost halved before I have my injection done anyway. I despair. I told her not to patronise me when she was asking about stress and anxiety.

[Annnon58]

Fighting medics is so stressful , self injecting at home without travelling to the surgery , arguing etc is much better for your health in many ways . Best of luck .

[Littledancingtiger in reply to Annnon58]

Thank you. The initial injection I fought for has definitely taken the edge off but I need more. Tongue still burning and little needles going off in legs and hands. I’ve got my friends mum who is a nurse to help give me another one tomorrow.