We are aware that many of our members have problems getting diagnosed and treated because their GP needs more information about the condition, especially where there is discordance between test results and the patient’s symptoms. Often the GP will seek out an expert on PA but will be unable to find anyone. Well, we have now been in touch with a practicing GP who has completed extensive research on various aspects of the disease and who will be glad to speak to any interested doctor who would like more information. Please telephone the office between 8am and 12 noon any Tuesday, Wednesday, Thursday or Saturday for more information.
Note that this system is for getting your GP in contact with the expert.
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fbirder
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Hi fbirder I know you are full of wonderful information on b12 deficiency so am hoping you could possibly give me any information on whether I am having the right treatment as I'm getting myself into a terrible state about all this and my anxiety is now through the roof with every single body sensation i feel.. i apologise in advance for the very long post.. .3 yrs ago I had a gall bladder removal op as I had been on PPI,s for a good few years and taken lots of antacids for ongoing indigestion pain and heartburn then 6 wks after the op i had a terrible depression come over me out of the blue it was so frightening. I tried going to the gym to see if it would lift my spirits I did go a little over the top in there on the 2 occasions I managed to go I must say.. the following morning I noticed fasciculations in both calves which further terrified me! A few wks later I started having terrible sciatic pain down backs of both thighs and arm muscle pains I couldn't lift anything slightly heavy..and I had no energy for a while sitting down during hoovering etc.. a month or so after this my arm pain stopped..but leg pains continued so my gp sent me for mri lumber scans heaps of blood tests (no mention of b12 at this time) ct scan ,emg conduction study. and then physiotherepy treatment stretching muscles to try help my pains in legs and by now burning thighs, feet pain ,body twitches, trembling, and cognitive problems. All my scans etc came back clear... Then eventually 2 and a half yrs later and still having these symptoms my b12 was checked it was 205 no anaemia ( but now after finding out about b12 checking back since 2013 my b12 has always been in the 200,s grey area) In Nov 2017 I was started on a loading dose of hydrocolbamin injections every other day for 2 wks then once a month.. my legs pains got so much better so did everything else..in May my leg pains returned so I finally persuaded my doctors to give me injections again every other day for a week that was a fight.. the pain has got better again though unless i do anything a bit too physical I get pain but not as bad as before..I also get burning front thighs if I've been walking a lot which I find freeze gel helps a lot. I still do get an annoying twitch in the same right arm muscle at times (is this normal) which scares the hell out of me and I still have the calf fasciculations and worse when my anxiety is high ..I had no anxiety until this lot scared me terribly thinking I have an awful neurological disease..In the last month I had started taking jarrows methyl b12 1000 sublinguals but after taking them for a couple of days I seem to get weird moving sensations inside the front of my thighs..so stopped them however the weird buzzing feelings have stayed in my legs for a couple of days now I feel them as I'm writing.. ( sorry but i also feel them inside my backside! at the moment) also odd leg twitches..so I don't know if the methyl caused this.. or are my muscles still very fatigued from the b12 deficiency as surely being in the 200s so long has taken its toll .. but my doctor has now recently said my latest blood test including folate calcium etc is all normal and my b12 is 2000 so therefor I only need a few more b12 injections 1 every 3 months.. I have had to try convince them I need it for longer but to no avail... I also told him my toes occasionally feel a little like cotton wool is round them but he insists on sending me to kings hospital London for an emg as he says my b12 is fine at 2000 after the 9 months I've been having it each month which seems pointless to me..... Im pretty sure my ongoing symptoms are still b12 related..do all these syptoms sound as though they are?.. or is 13 injections over the last 9 months enough other than the sublinguals ive taken to of cleared these symptoms up by now? .. do I need to keep having b12 even though I don't have p.a ? Even though my antacids probably lowered it... is a level of 205 low enough to cause this for so long.?. im sorry this is so long but this is so frightening my symptoms never seem to completely go and neither do the calf fasciculations which I've been told is benign muscle syndrome... but is b12 the culprit?... or maybe being deficient and going mad at the gym has over stressed the nerves... i would really appreciate any of your views .... thankyou for reading and good wishes to all in this scary situation. Mr google is a very scary thing to start looking through at times like this..
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