PA and numbness

[hollytros]

I have PA, on monthly injections, the last couple of years numbness in my feet and lower legs is getting worse can any one help me

[clivealive Forum Support]

Hi hollytros are you in the U.K.

Are you on cyanocobamalin B12 injections?

It seems that like many others you may need more frequent injections.

Have you been to see a doctor about your symptoms?

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

I wish you well.

[hollytros in reply to clivealive]

Yes I am in the UK and I am on monthly hydroxocobalamin B12 injections been on them since I was diagnosed with Pernicious Anaemia in the 1980's I have seen my doctor and that was a waste of time, he tried me on anti depressants then epilepsy medication both made me feel terrible, my serum vitamin B12 level is high at :-1476 ng/L

[clivealive Forum Support in reply to hollytros]

How ever did you get to have your hydroxocobamalin injections monthly?

That's why I "assumed" you were on cyanocobamalin.

Your high level is only to be expected and is not a worry as you cannot overdose on B12 as any excess is excreted via your urine.

Is you Folate level OK?

[hollytros in reply to clivealive]

I was recommended to have them monthly by a blood specialist. My Folate level is:-13.9 ug/L. I was wondering if there is anything I could take that would utilise the B12 in my blood better as sometimes I feel that I need a boost

[Portia1974]

Have you had MMA or Homocysteine tests to check for a functional b12 deficiency? From what I understand this can develop over time when high levels of b12 are maintained in the blood. Serum numbers look fine but no "action" at a cellular level.

Also...other Vitamin and mineral deficiencies can cause the sensations you describe. I know from experience Vitamin D. Iron too (which needs to be at a good level for b12 to be effectively used). Also magnesium and zinc.

Px

[hollytros in reply to Portia1974]

thank you for your suggestions I shall look into them as I don't know what MMA or Homocysteine test is. I will increase my vitamin and mineral intake.

Thank you again for your help

[Carolynchristenson in reply to hollytros]

Hi Hollytros. I have the same symptoms as you and I also have been having the same injections monthly for about 4 months now. I've been treated overall for just over a year and had to see nerve tests on my legs, feet and hands. They tests showed that I've lost my knee reflexes and they suggested it may be linked to me often being borderline diabetic. But the numbness goes on and now the Dr is sending me to Guys hospital nerve clinic for possible further eng tests which I'm not looking forward to. They also think I've got Fibromyalgia and I've had hypothyroidism for years. But, they are not liking any of them or blaming any if them, so I think they just don't understand what that worsening numbness is and I completely sympathys with you as it's horrid. But if I do get any results and help next month at Guys hospital I can try and let you know?

[Hidden in reply to Carolynchristenson]

Carolynchristenson Ill be interested to know too how you get on

[Portia1974 in reply to hollytros]

You're welcome 😊 Methylmalonic acid and Homocysteine (I believe) get utilised in the process of getting b12 from your blood to your cells. Where it can get to work (among other things) repairing and strengthening the myelin sheath around your nerves. If there are unusually high levels of MMA or Homocysteine in your system, then it is not getting used up the way it should = functional b12 deficiency. That is, your levels are fine in your blood...but deficient at a cellular level as opposed to a blood level.

Px

[Hidden in reply to Portia1974]

Interesting information Portia1974

[JAMV in reply to Portia1974]

What do u do then if you have a functional deficiency and the b12 is not utilized???

[Hidden]

Hi Hollytros, i have got the exact same thing had it from since before 2015 when i finally got diagnosed with PA n Hashimoto's had the every other day loading doses for 2 weeks then ive been on 8 weekly ever since. Nothing has changed infact its worse im seeing a haematologist next week i know they arnt the ones who would deal with this problem but they might be able to tell me who i should actually see i hope you manage to get some answers soon....