Need advice PLEASE!!!!!!!

Hi everyone...I'll keep this short...was diagnosed 3 months ago..had loading doses... Now si every other day... Been feeling great.. And neurological symptoms almost gone.. Just left with pins and Needle and mussel twitching.. But last week for 2 days I felt like my body was fighting a infection or temperature and BP fine.. Now again since Monday I'm feeling the same but worse.and every now and then I feel it's lifting only to feel worse ..but again no temperature and BP fine.. Could this be related to recovery??.. Or is it possible I actually have a infection or virus 😒...any advice would be much appreciated ☺... Thanks guys and gals ☺....

18 Replies

  • Hi Frances55 you have a diagnosis of P.A and are having a return of neurological symptoms.

    What frequency of B12 injections are you on and do you know whether your Folate level was checked at the time of the loading doses 3 months ago?

  • Thanks for getting back to me ☺... I'm injecting every other day since 26th July until no further improvement.. My serum foliate was done just before my loading doses on the 9th June and it was 7.9 and my ferritin was 27...gastric parental cells positive... I've just started taking in the past week multivitamin with iron and vitamin C + zinc for the acne the injections have caused.. And potassium levels done on the 10th August 4.2...what do you think 🤔... Thanks ☺

  • Ranges vary from lab to lab - so posting ranges would be helpful :-) Your Ferritin looks low - what dose of iron are you taking ?

    I have read that Multi-vits are often a waste of money as you rarely find there is enough of anything in them to help - and if you increase the dose then you could overdose on some things you do not need in excess. Best to find out what you actually need. Have you had VitD tested ?

  • Thanks for your reply ☺... Yeah my doctor did say my iron was a bit low... I'm seeing him on Monday and will be asking for a supplement... How do I go about posting my ranges on this site??... I've just sent them to clivealive a different way.. So you could have a look... I agree about the multi vitamins.. Yeah I need to get this situation down to a fine art if I'm going to feel better ☺...

  • You have posted the results but not the ranges :-) There are guidelines for treating Iron issues but Docs rarely seem to know them and think that being in range is good enough. It is WHERE you are in the range that is key. With my Thyroid UK hat on I would suggest a Ferritin level that is halfway through the range.

    Don't forget to ask for a VitD test :-) Often low in the Uk and when people have auto-immune conditions.

  • Thanks for your reply ☺... I posted my results in a new post titled... For clivealive... My vitamin D is good.. I have to take 800 I a day because I have Pagets disease.. I think I'll stop the multivitamin and get iron from my doctor 😷... All the best ☺

  • If you are in the UK then your VitD needs to be around 100 - the ng/L measurement - then around 60.

  • I get checked twice a year because of my Pagets disease... They have to keep on top of it.. So I think the vitamin D is all good ☺... Cheers..

  • further to comments on posted test results

    not really possible to answer on the virus issue - just not enough info - think Marz and clivealive have made suggestions on other minerals and vitamins.

    Your blood tests weren't showing any signs of anaemia - nothing obvious - so unlikely that potassium is a problem. You also mention other conditions so may be it is something to do with that.

  • Sorry not very good at this 😔... I was diagnosed in July with PA.. Gentic.. I've been injecting since July and feeling a lot better... All my recent tests came back good apart from my iron.. Seeing doctor on Monday to start iron supplements... Potassium was also good ☺... My query was that I've been feeling unwell in the respect that I feel I'm fighting a virus or infection... But don't have a virus or infection.. Just wondering if it could be part of my recovery... Sorry if I confused things.. I'm not feeling too well at the moment... Thanks for taking the time to reply ☺

  • not a problem - just wanted to avoid responses on results being on two posts rather than one.

    being iron deficient will make you feel pretty grotty so it may just be that - really to many unknowns to answer your question but if it was your immune system over-reacting (which can happen when you start on B12) I would expect that all the symptoms of a cold would be expressing themselves a lot worse than normal (eg runny nose etc) - so doesn't quite fit with what you describe.

  • Hi Frances, sorry you are so unwell. I can only say that sometimes the symptoms seem to be improving and then it is like you are right back at the beginning of treatment. I think everything counts when you have nerve damage. The B12 does utilise other vitamins so important to eat very well. I eat potassium rich foods every day, banana, kiwi, mango, avocado etc. For iron and folate dark green vegetables and always squeeze lemon juice over to extract more iron. I take 4000mcg folate on the days I inject. I Also try not to drink tea for a couple of hours of eating iron rich foods as this inhibits absorption. You mention muscle twitching, I started taking magnesium recently and most of my twitching has eased and have not had spasms or cramps which was excruciating. Also rest is important. I have been injecting since June 2016, some days I cope and feel improvement others I think I am never going to get better but the neurologist who I saw last September said the nerves can take several years to heal. i think it is a slow process. I hope you feel improvement again soon. Best wishes.

  • Thanks for your kind reply ☺... How much magnesium do you take???... I'll start some foliate and see how I go.. Thanks again ☺

  • Hi Frances, firstly apologies for typo. Folate should be 400mcg, not 4000. The magnesium I take is Magnesium Malate. I did a little research and this apparently does not cause stomach upset or diarrhoea. Capsules contain 70mg each, I take one morning and night. You can take up to six a day but recommended to take the fewest that achieves results. This is just over the last few weeks. While waiting for capsules, I bought a magnesium spray and rubbed into my legs and feet. This also made a big difference. I hope you get some ease from symptoms really soon. Best wishes.

  • Why do you say you don't have a virus infection? This seems by far the most likely explanation for the recent deterioration. Relax and give it time to settle. Whatever the reason stressing about it will only make you feel worse. Viruses often present with very insidious symotoms and often there is no fever. It may take several weeks to fully recover. Use the time to be nice to yourself and take things easy. Fingers crossed you will soon be feeling much better again and your PA symptoms will continue to improve.

  • Very true and wise advice ☺... I did stay at home all day yesterday.. So maybe I'll feel better today.. I'm a active person and feel guilty when I sit about... But needs must.. I think sometimes when one has been unwell for so long, then gets relief.. It hits hard with the fear of it all returning... I think that's where I'm at... Sorry if I'm not making much sense.. I do appreciate your help very much.. Thanks again ☺

  • I'm sure you'll soon feel much better and this will be just a tiny blip in your recovery. Enjoy this chance for som R&R. You deserve it.

  • Thanks a million ☺... So many helpful and lovely people on this forum ☺... All the best....

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