Hi,i was diagnosed with p a 4 years ago after 2 years of going back and forth to doctors with symptoms of it but was never picked up,had a level of 116 then. Had almost every symptom going,neurological ones also,but only had loading jabs and then put onto 3 month cycle. I have got my level up to 417 in the 4 years ive been having jabs. Recently i have been experiencing extreme numbness waist down,went to doctors and he said it could be lots of different things and tried to blame it on my diabetes but this is very well controlled with a hba1c of 34. He eventually referred me to haemotologist. I ended up going to A n E with the numbness as doctors surgery didnt want to do anything about it. Registrar could see it all pointed to the pa so hand wrote me a letter to give to doctors saying i needed jabs every other day. I had these for 2 weeks until i saw the haemotologist, he took bloods and wanted me to stop taking the jabs for 2 weeks have more bloods to see what level had dropped by. Sensations were changing in my legs for the 2 weeks i was on jabs,burning calfs and feet and sometimes tingled but now i havent had them for 2 weeks and due to start up again monday my legs feel like they are vibrating if knocked or banged. I felt so much better while i was on jabs every other day but i have crashed again. Didnt know if anyone knew if vibrating is nerves reparing??
Sorry for lengthy post. Thanks to anyone who helps.
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tantan83
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Read BCSH guidelines. Alternate injections until no further improvement. You had a symptomatic response and have gone backwards when injections were stopped so I would push for more alternate day injections. The vibration could be a sign as some symptoms get worse before better. I had leg vibration in my thigh muscles after exercise but since starting B12 that all stopped. During my 8 weeks alternate day injections I developed a slight thumb tremor which I never had before which I was worried might ne Parkinson disease as I still hadn't seen neurologist and gp wasn't interested so knew no point seeing them. This settled with a few more weeks treatment so perseverance pays. Of course it is also important other things are ruled out but as they are doing that it won't do harm to continue injections. I insisted which was difficult but it was the best thing I ever did as it was the cause of my neurological problems. Good luck!
Thank you so much for your reply secondchance. I am due to have bloods on monday and the start injections again every other day again as he was quite sympathetic and said even though levels were over 1000 after 2 weeks of alternate days when i saw him the symptoms had to be treated. He just wanted me to have the 2 weeks off to see how much the level dropped by.Think he had to go off and read up on pa as i believe he didnt know much about it. Hopefully i will get some more answers when i see him again in august. I just feel like i'm in this trance like state,and when ive got 2 children to look after its hard work.
You can leave a message and they will get back to you. I would mention the severe neuro symptoms you have. The chairman is very sympathetic.
"Recently i have been experiencing extreme numbness waist down"
If your PA is not adequately treated , you may be at risk of developing subacute combined degeneration of the spinal cord. This happened to the chairman of the PAS.
Have a look particularly at page 29 in the BCSH Cobalamin and Folate guidelines Second Chance mentioned. It's a diagnosis flowchart. I have copied this page for my GP. The PAS has a useful summary of this in its library section. There is also a section on PAS website for medics which your GP may be interested in.
Yes i'm in the uk sleepybunny,i will have to give them a ring on Monday and see what he says when he gets back to me.
My mum is very supportive and normally accompanies me to appointments as she's an assistant practitioner and knows what to ask if i dont.
The hematologist hadn't heard of anything like what i'm experiencing but agreed that i should continue on injections on alternate days.
My surgery doesn't seem clued up on pa,as when pregnant wasn't referred to hematologist or had extra shots which after researching and getting clued up about it i should have. I even tried to show the doctor that sent me away the nice guidelines on my phone but he wouldn't even look at screen,that's when i came away and thought they are not going to treat me this way. Will have to buy books as i do think they will be very helpful.
Thanks for your reply,its just nice to hear from someone that knows what they are talking about and to not feel alone in it all.
You may find it helpful to get a copy of Sally Pacholok's book "Could It be B12" as well...a real eye-opener. Some of the case histories made me cry. Reading "Living with Pernicious Anaemia" by Martyn Hooper was like reading about myself in parts.
You may find that you are more clued up about PA and B12 deficiency than your GP.
I do not have a diagnosis of PA but have many of the symptoms. In the end, after over 10 years of deterioration and several requests to have a trial of B12 which were refused, I chose to supplement myself. This was a last resort as once you start to do that it messes up blood test results and now I don't think I'll ever get a diagnosis.
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