How long is it possible to have pa before diagnosis

Hi I have felt ill for the best part of 30 yrs but was diagnosed with pa 7 years ago am up to date with jabs but just feel I am getting worse :( jabs don't seem to help much maybe have a couple of good weeks in the 12 wk cycle !! I am so exhausted & so weak all of the time I have pins & needles in my hands constantly have also started getting horrible vibrations in my spine my arms shake my legs feel like they are shaking but not obvious to anyone else like the arms !! I am constantly sweating my liver function abnormal have bn diagnosed with copd but some how everything seems connected !! Doctors do nothing to help family think I'm a hypochondriac but I literally feel like I'm dying :( I could go on with the symptoms all day but wonder if it could be because was ill so long with no diagnosis. Any one else like this ??

10 Replies

  • Hi. Sorry your feeling so bad. I to had ill health for so long and gp kept say your depressed and that it was my back causing the problem. I was diagnosed with PA 5 years ago but knew it was longer. Because of being let I feel that led to me having lower back and neck surgery and then went on to have connective tissue disease and now fibromyalgia . Thank god I changed doctors and I actually have my b12 jab every 3 weeks which helps heaps.

    I would ask your gp to refer you to a rheumy and take it from there as the blood works they do are more intense.

    Hope your feeling better soon.

  • Thank you I really need to keep pushing for some answers just always hoped every new symptom would give me that !! Glad your feeling better now & hopefully my time will come x

  • Hi,

    I've assumed you're in the UK.

    "maybe have a couple of good weeks in the 12 wk cycle !!"

    A 12 week cycle suggests you're on the standard treatment for B12 deficiency as outlined in the BNF (British National Formulary) Chapter 9 Section 1.2. and also referred to in the "BCSH Cobalamin and Folate Guidelines"

    "I have pins & needles in my hands"

    Pins and needles suggests that you may have neurological symptoms. The treatment for B12 deficiency with neuro symptoms is more intensive than you are receiving. I think it's an injection every two days until you stop improving then an injection every two months. The BNF Chapter 9 Section 1.2 gives more detail. Your GP will have a copy of the BNF but may not have seen the BCSH Cobalamin and Folate Guidelines. I found page 29, a diagnosis flowchart in the BCSH Cobalamin guidelines useful, it mentions b12 defic with and without neuro symptoms. I am going to give my current GP a copy of the BCSH Cobalamin guidelines.

    Links to lists of symptoms. I always mention all my neuro symptoms. I have asked GPs why I did not get the treatment for B12 deficiency with neuro symptoms.

    pernicious-anaemia-society.... Symptoms list in here

    Have you rung the PAS? 01656 769467 Office is open this morning. You can leave a message and they will get back to you. I have spoken to them more than once.

    The person who runs the B12 website is very sympathetic. Contact details on the website. This website has helped a lot of people. It can take some time to get a response.

    "but wonder if it could be because was ill so long with no diagnosis"

    I have been ill for many years and have failed to get a confirmed diagnosis and in the end I resorted to self treatment. I suspect I have some permanent nerve damage. Sadly it's possible that someone who has been untreated for a long period may suffer some permanent damage but on the other hand some people make good recoveries after many years of suffering if they receive adequate treatment.

    Useful books

    Could It be B12 by Sally Pacholok

    Pernicious Anaemia; The Forgotten disease by Martyn Hooper

    Living with Pernicious Anaemia by Martyn Hooper

    I hope your GP is monitoring your folate, ferritin, B12 and full blood count. You need good levels of iron and folate for uptake of B12 to be good. There can be useful clues in the FBC. I keep an eye on MCV and MCH. I always get paper copies of blood tests.

    "family think I'm a hypochondriac"

    I empathise with you. I am sure you'll get lots of support. Is there a family history of B12 problems?

    Have you had Coeliac tests? Have you had thyroid tests? These two conditions can sometimes be found with B12 deficiency. There is a very active Thyroid forum on HU.

    It is possible to test negative for coeliac disease and still have it.

  • Thanks for your reply 👍🏼yes I was tested for celiac & was negative even though I have terrible stomach problems !! I had carpel tunnel op on both hands but done nothing to help at all !! Have had many operations every time I pin my hopes on a recovery but nothing has helped , did go back to dr yesterday (9/10/15) broke down in tears again . She did neurological assessment but was not good as I stumbled when trying to walk the straight line tried again but couldn't do it !! Finger to nose test bad also !! Funny thing is as scary as that is its the general feeling of illness that gets to me the most & the tiredness also being the butt of everyone's jokes about me always being ill 😞 My daughter has this also but hers due to gastric bypass , my mum was like me always feeling ill but she died at 52 so never know if she had this or not.dr sent me for bloods which were done yesterday & have an appointment with another dr Tuesday when results back & think I have to have referral to neurologist x

  • Hi again just checked symptoms with the link you posted & I have every single one of them apart from the hair loss but have lost most of my eyebrows lol x

  • I can trace symptoms back over 4 decades - so yes, possible to have deficiency for a very long time before diagnosis.

    I still have some very minor problems with carpel tunnel and feeling in my left foot but with the right levels of B12 and the right types of B12 things are continuing to improve - after a few months of using adenosyl my bowel movements are starting to get a lot more regular. Unfortunately there are no guarantees that everything will improve ... so really a question of try it and see, if you have the resources - though it really shouldn't have to be that way and it shouldn't be so much of a war against medical ignorance.

  • Thanks for your reply , if your female did your problems start after childbirth ? Think looking back mine started after birth of my second child who will be 33 this month !! But then I was a very sickly child but health was OK through my teenage years x

  • Female but never had children. My problems started in childhood - and thinking back use of nitrous oxide as a dental anaesthetic (yes it was that long ago!) may well have been a factor.

    Pregnancy and breast feeding are known to be times when you can use up reserves of B12 - transferring it to the children.

  • Some of my problems started after child birth.

    Gambit mentions nitrous dioxide which inactivates the B12 in your body. Sally Pacholok talks about this in her book "Could It Be B12" Gas and air used in pain relief for women in childbirth contains nitrous oxide. You may find the following article interesting.

    I have read that B12 deficiency can cause issues with proprioception which I think is your awareness of where your body is.

    I found this article on HU which may be interesting for you to read before you see a neurologist. A lot of neurological examinations do not include tests with your eyes closed.

  • Another HU thread that might be interesting

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