Good morning. Over a year ago I presented with a peripheral neuropathy in both hands and left foot. I felt like I had a sock on up to the knee on that foot. I was so tired I slept for most of a week and had a severe headache that wouldn't go away. I had all the tests and they couldn't find anything wrong, so I was referred to a neurologist, had an MRI scan and everything came back clear. I was given amitryptyline at 10mg a day, which did nothing to help.
I very gradually felt slightly better energy wise but the neuro symptoms didn't improve.
I went to see an osteopath to see if she could help and she recommended that I take a combined B supplement with the emphasis on B12.
My neuro symptoms seemed to improve very slightly, but then got worse again and I went back to the neurologist, who said that apart from my folate being very very low and he didn't think that had would have any impact on my symptoms. He told me to go back to the GP and discuss folic acid supplements. He diagnosed me as having a brain which had become over sensitive to pain and that nothing could help me. He reccommended acupuncture and mindfulness for pain management. By this time I had all the symptoms of carpal tunnel in both wrists.
Then I began to join the dots together and remember that my mother had been diagnosed with pernicious anaemia. I saw a different GP who dismissed my suggestion completely.
I have experienced over the years, acid reflux, for which I've been medicated with ppi's, for over 7 years, anxiety,, heart palpitations, which I sorted by taking a magnesium supplement, I started going grey at the age of 25, I've had irritability issues all my life.
I found the lovely Martyn Hooper at the pernicious anaemia society, who told me to take a high dose sub lingual spray of B12 and to go and see my GP.
When I did see my GP he told me that I'd been tested for gastric parietal cell antibodies three years ago and my then GP had told me the test result was normal, when it was positive. Of course my B12 appeared normal because I've been taking supplements.
He acknowledged that the link with my mother was a strong indicator but refuses to give me injection, even though he acknowledges that may make my nerve damage permanent. I explained about the haematology 2014 guidelines and he said that it wasn't that simple. He said that maybe it would be good to see the gastroenterologist and neurologist together, but that could take months.
Does anyone have any suggestions as to what I can do now? I understand that self injecting could be an option, but I don't know how to find a doctor who would give me the first injection.
I'll do anything to help myself. I don't mind paying to see someone privately and I don't want to pay to see someone who won't help me. I'm frightened and would appreciate any help you can give me. I live in Berkshire and will happily travel to Oxfordshire, Hampshire or Wiltshire.
Thanks for your time.
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Withattitude
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Hi, welcome, hopefully we can be of help to you even if it is only a dose of compassion at your plight.
Have you considered taking martyns advice and using the spray? There are also other methods ie, patches and drops if you dont want to self inject yet. Gambit uses nasal drops to good effect(for her).
With regard to going private, there doesnt seem to be many out there who offer the service from what i have seen on here.
Thank you. I am taking the sub lingual spray, but the only treatment that will heal my neuropathy is injections of B12, if it isn't too late. I hope it isn't.
Hi Beginner1. I'm wondering if you might be willing to share your private GP's name. You could maybe message me if you are willing to do that? I really hope the injections are helping you.
I think this is dreadful - what's with gp's that they are so blind? Your gp even goes a far as to say he acknowledges that your nerve damage may be permanent... your must get b12 - and it must be in injection form.
"my then GP had told me the test result was normal, when it was positive"
So sorry that this happened to you.
I sadly learnt to get copies of all my test results several years ago when I found out that what I was told was "normal" face to face or over the phone was not always "normal" on the copies.
Have you ever had the IFA (Intrinsic Factor Antibody) test? this can help to diagnose PA but is not always reliable. It is possible to have PA even if IFS test is negative/normal.
The BCSH Cobalamin and Folate Guidelines mention Antibody Negative PA on page 29.
Some tests that can help diagnose B12 deficiency will be affected if a perosn is already supplementing with B12.
Fbirder has a useful summary of mainly UK B12 documents including the ones above. If you pm him or search for his posts I'm sure you will find a link to it.
I gave my GPs a copy of Martyn Hooper's latest book
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
After many years the NHS has finally acknowledged that b12 deficiency is likely to be a part of my health problems.
You may be able to find out from your local CCG (if you are in England) or your MP if the BCSH Cobalamin and Folate guidelines are being followed in your area. Freedom of information requests can also be useful sometimes.
I found out that some UK areas use local NHS guidelines on B12 deficiency and that some of these local guidelines have not been updated for several years. These local guidelines might be found by an internet serach, a search on local NHS website or an FOI request to local NHS website.
Bless your cotton socks. I'll check all the links and I think I have a private GP I can go to. The last time my IF was tested was also 3 years ago and it was negative. I really don't like medical professionals as so many are arrogant and dismissive.
Martyn Hooper, the chair of the PAS, tested negative on the IFA test more than once before testing positive.
I lost my trust in medics after some of my experiences. I knew I was physically ill and no-one would listen to me although I will say that my current Gps seem okay.
Hi l am 20 years in and have had a terrible time l have had to fight health and drs l am now getting b12 every other day until no further improvement as stated in the doctors guidelines find it by following a trail through section on blood, l recognise the sock feeling and think you should not self treat but fight the system find the section on deficiency with neuro implications,tell your Dr that you want to see a heamotologist, then tell them you want every other day until no further improvement l wrote my case and symptoms to the heamo before l saw them l didn't,t even speak before he said l think l agree with you, l was in shock 20 years of " your just depressed,your in denial!" If your in as much neuro pain as l am it may be too late but you should insist on being given the chance of repair! Good luck it's there 1 line in the BNP/BNF the drs use under ' Blood ' " B12 def with neuro implications every other day until no further improvement " regards juliet
"l recognise the sock feeling and think you should not self treat but fight the system.......l wrote my case and symptoms to the heamo"
I have had the sock and glove feeling for many years and had numerous other neuro symptoms. I was never referred to a haemo although I asked. I also gave GPs etc all the B12 deficiency advice available at the time along with detailed lists of symptoms and all my blood results. Other specialists eg endocrinologist, rheumatologist, neurologists I saw were unwilling to consider B12 deficiency with one exception whose comments were ignored by my then GP.
I agree in fighting the system and did for as long as I could, enduring continued deterioration and some unpleasant experiences which included being shouted at, until I felt forced to self treat. After many years the NHS is now willing to consider the possibility that B12 deficiency is part of my problems, when I worked it out years ago.
I wish all of you posting on this thread good luck with getting the treatment and care you need.
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