What to expect next?

Hi all, I'm new to this group. I've been being treated for several years for Trigeminal Neuralgia. Following a neurologist appointment in January my GP was asked to carry out some tests including blood. My surgery finally got around to doing this and this morning I got the initial results which show antibodies and low vitamin B12 levels (I didn't think to ask for the actual number). To be honest I didn't have a clue what this meant and the GP didn't want to discuss until they have rerun the test to confirm (doing this Monday), they're also going to test for other stuff like Thyroid at the same time as hadn't done this previously. Then they're going to refer me to Gastro at the hospital she said. I don't know if this is related to my TN or just a coincidence

I've been experiencing extreme fatigue, confusion, memory loss, upset stomach, nausea, high pulse rate and a lack of appetite for a long time now but it's always just been considered a side affect of the pain from the TN. I was sent for CBT the year before last by the pain management clinic as I had become anxious and kept getting confused and tearful, again it was linked to my pain or the medication

The end of last year I had a successful operation to block my TN, since then my pain has been under control and have come off the medication. However the other symptoms have been worse, especially my heart rate which seems to go ridiculous just walking up the stairs. I've had a couple of panic attacks feeling I couldn't get enough oxygen and almost fainting, I'm also tired and achy. I've been back and forth to the GP, the last time he just made me cry by looking at me like I was a hyperchondriac, he told me it was just anxiety as I probably didn't want to return to work....which I did and was asking for help in this! He didn't check my pulse despite me reading it at home and telling him how high it had been getting

So the results of this test was somewhat unexpected as I didn't know what they were looking for (I've had so many tests and my memory is rubbish they've blurred into one)

If this next set of tests confirms the results what is the timeframe on feeling more energy? Id really like to get back to work asap but can barely stay awake currently

Thanks for taking the time to read :)

24 Replies

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  • Hi Jules,

    Firstly welcome here! I am sorry to read your post and hope for you that you will feel a different person once the B12 injections have repaired their magix. It does read like you may benefit of getting copies of your blood tests so you can see what has been tested and what not, what ells may not look good etc. Its worth keeping a file with all your blood tests, so you can see what changes over time with what treatment.

    Re:"

    If this next set of tests confirms the results what is the timeframe on feeling more energy? " It can take time, we all are different, perhaps it depends on how long and how deficient you are to start off with, but some feel improvement immediately, others it can be more weeks or months (it took me 3-4 months) but then you really will feel a lot better. It just can take time for the body to undo damage done with out enough B12.

    I hope you will feel a lot better soon!

    Kind regards,

    Marre.

  • Hi Marre, thank you for your response. I'm back on Monday for the new blood tests so going to ask they print me a copy of what they tested and the results. Problem is that my appointments are always early morning and I'm usually in a coma like state so it's hard to take it all in!! Hopefully the diagnosis is a good thing as it can be treated :)

  • Hi Jules,

    Re:" early morning and I'm usually in a coma like state", know what you mean..that is why having copies is good so you have time to look and understand more when you are a bit more with it. Sometimes having questions written down on paper, 2 copies, giving one to GP and then going trough them, writing down the answers helps (I did that) and writing a letter to GP can help so you get answers in writing that you then can try to get your head round when your brain is working a bit better again.

    I've done all the above, am fine now, but it can take time, hope you will get a lot from the B12 treatment!

    Kind regards,

    Marre.

  • Thanks Marre, I'm used to taking questions with me when I see my consultants, just hadn't expected to need them for blood test results I thought would be negative

    Hopefully though they'll start me with some treatment soon so I can feel 'normal' again :)

  • Hi Julesc78

    It is so wrong that, like many on this forum, you are treated so badly when feeling so vulnerable and ill. The lack of knowledge, concern and condescending arrogance of some GPs continues to shock.

    It might help to know that you are among friends, as you will see from Chancery's post here, that she also has trigeminal neuralgia and is treated with B12.

    healthunlocked.com/pasoc/po...

    I am sure that, now you have been diagnosed and the B12 begins to kick in, you will begin to feel improvements very soon.

    Very best wishes

  • Hi Polaris, thanks, interesting to see someone else with TN on here. I've not started any treatment yet for the B12, not sure on timescales, took two weeks for the last sst of blood tests results so guess at least that long again

    To be honest although not expected the diagnosis is a relief. The attitude of the previous gp I saw had me convinced I was making it up. I really had thought I might be a hyperchondriac after all and was just being selfish by not getting over the tiredness

    Fingers crossed they start treatment soon :)

  • Hi Jules. Yes, it's good that your B12 deficiency has been recognised (definitely not a hypochondriac) but I'm at a loss to understand why GP is still waiting for more tests, when, as Gambit has already said, BCSH, NICE and UKNEQAS guidelines all recommend treating neurological symptoms (which you already have) without delay and according to symptoms, not tests, to avoid permanent damage.

    Here is a video is on this site under 'writing to your doctor', which gives important information :

    b12deficiency.info/signs-an...

    I wonder if it would be worth taking someone with you for support and this latest BMJ - A.A Hunt research document, which might help reinforce the need for treatment to begin as soon as possible and the correct tests carried out meantime:

    Cmim/BMJ document. " Summary:

    * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given."

  • I'm not really sure why they have to repeat the tests either. I can understand why they're doing more but unsure why they can't start treatment now

    It was a GP I haven't seen before though and the tests were related to my TN so maybe it's just confused them getting this result. I don't know the GPs background or experience, I seem to see a different one each time

    I will ask the nurse tomorrow when she takes my blood if she has any idea for the wait. Often I find the nurses at the surgery better informed than the doctors

    I'm just hoping its not a long wait as I'm not living at the moment. After just getting into remission with my TN pain I was expecting to get my life back, feel like I'm cursed!

  • B12 is a vitamin that is used by the body for a number of key processes including cell reproduction, maintaining the lining around nerve cells and recycling a few harmful by-products of other processes back into useful building blocks.

    So, being low in B12 can cause a lot of problems.

    A list of symptoms is here

    pernicious-anaemia-society....

    B12 is a vitamin that the body can't make so it has to come from your diet. It is only found in animal products so if you don't eat meat, fish and dairy or use fortified foods (eg a lot of breakfast cereals) you will become deficient.

    However, the most common cause of deficiency isn't diet - it is when something goes wrong with the very specialised mechanism the body uses to absorb most of your B12 from its food - in the ileum. Possible causes of malabsorption include auto-immune responses (which from what you say about anti-bodies) is probably the cause in your case. Other causes include gastric surgery that affects the ileum, drug interactions - including some pain killers - and lowering of acid levels in the stomach as you get older.

    If you have a malabsorption problem then you need to find a way of getting B12 in to you that doesn't involve the gut - the most efficient way is intra-muscular injections and you will need these for life. You will be given a series of 'loading shots' and then put on maintenance shots. Assuming you are in the UK then the recommendation, where there is neurological involvement - eg the tingling you are reporting - is loading shots every other day until symptoms stop improving - followed by maintenance shots every 2 weeks.

    I am not sure why your GP would be rerunning the tests. the test for anti-bodies is known to lack sensitivity and people can often be tested several times with different results each time - if you have a positive result already that is what counts. It may be that your B12 levels are at the lower level of the 'grey' range - the serum test is again known to be inaccurate for various reasons - and actually it would be more appropriate for your GP to be looking at MMA or homocysteine levels (two of the by-products the body can't recycle without B12) if they need to clarify what is happening, though the recommendation is to treat on basis of symptoms not test results.

    NICE guidelines can be found here

    cks.nice.org.uk/anaemia-b12...

    Unfortunately they are not the clearest guidelines in the world and are very confusing in relation to anaemia. Anaemia is a symptom of B12 because of the role B12 plays in healthy cell reproduction - but it can be hidden by the counter-effects of high folate/B9 levels - and significant numbers of people will have other signs well before anaemia surfaces - the effects of B12 deficiency are very individual.

    Dealing with GPs can be very difficult as they generally aren't as aware of B12 deficiency, what it really is etc, as they should be and there are a lot of myths and misunderstandings - and as I said above - the guidelines sometimes really don't help with breaking these myths.

    You mentioned an operation last year - it is probably worth finding out if you had nitrous oxide as an anaesthetic. Unfortunately this oxidises the B12 in your body meaning that you can't use it though it will still show up as B12 on the serum test. If your symptoms got more noticeable after the surgery then this may be part of the reason.

    It can take a few months for symptoms to improve when treatment starts - but for some people some symptoms will show a dramatic improvement.

    If you can it is worth keeping a diary of symptoms - even if you don't think they relate to B12 - and mark how they change during the loading shots and after.

    You should also be aware that many people (myself included) find that the maintenance shots just aren't enough and symptoms return well before the next injection is due, but see how that goes and if you are unlucky there will be lots of people on here to help you with finding ways of supplementing for yourself if you are unable to get through to your GP.

    It is also worth asking your GP about your folate/B9 levels as the body needs good levels of B9 in order to absorb B12 so you may want to look at supplementing B9 if it isn't at the higher end of the normal range.

    The only reported undesirable effect of B9 being high is that it can mask anaemias causes by some conditions, such as B12 deficiency.

    there are no known undesirable effects from having high B12 levels.

  • Thank you Gambit62 for such an informative post! I have spent the day trying to educate myself on this as much as possible

    I'm 36 now but I do wonder if this is related to the anaemia I was diagnosed on and off with in my teenage years? Expect back then I was just given iron supplements. I recall at one point being threatened with a blood transfusion if my condition didn't improve. But my Mum fed me a ridiculous amount of liver in my diet and it improved

    I've suffered spells like this during since then but never this bad, it's been put down to allergies or anxiety. Then I had a diagnosis of PCOS after infertility tests, then the TN happened. Just makes me wonder how long this could have been a problem but I've never been tested for this one thing

    I can only thank the neurologist for requesting the blood tests, he was awful in person and I didn't even know he had done until I got the call from my G. Surgery to book them....I never even thought to ask what they were testing me for!!!

    It's a weird world :)

  • I am 53 and was diagnosed - accidentally in December 2012 - blood test in hospital when I had to have an operation to pin my ankle - and thinking about it I think my symptoms also go back to childhood.

    Liver - which I absolutely hate (don't like meat at all but that has to be the worst one) is actually a good source of B12 so it may be that that helped - though generally better if not cooked well - as the liver is the organ the body uses to store and recycle B12 ... and it can take years and even decades for a malabsorption to manifest as a full blown deficiency ... my experience since Dec 2012 is of having had to work out for myself what B12 deficiency really means - Could it be B12 is a really good book as is Pernicious Anaemia - the Forgotten Disease. GPs really tend to know next to nothing - which is really sad as it isn't really a rare condition and is so easy to treat ... and not that expensive to treat either.

    And the person I'm really grateful to is the Consultant's poor assistant who drew his attention to the low levels in my notes -otherwise I think I would have left the hospital none the wiser!

    In fairness he was a bone surgeon but given that low B12 can lead to osteoporosis and osteoarthritis ... not to mention falls that can leave bones broken ...

  • Thanks, I'll have a look out for the books. I prefer to know as much as possible about what's happening :)

  • I've been treated in a similar manner by gps. And have gone through all the same emotions. I'm a bit further forward (although still got all symptoms but slightly improved since 6 booster injections.) I've just had scope last week. They've tested for h pilori and cealic desease waiting on results. My stomach shows gastritis which considering I've had b12 injections and take folic acid (although folic levels normal anyway) I think must indicate either not enough b12 or something else causing the gastritis either what they've tested for or another auto immune disorder - but I'm no doctor. Going back to gp this week to discuss. Getting an Mri next sat to look for signs of lupas or Ms :/ . Loss of balance and tingling in my head along with the fatigue are the symptoms that have made it impossible for me to work since jan so I know how you feel xx

  • Hi P101, thanks for the response and sorry you're going through this too. I'm also waiting for another MRI because of my TN to check for MS although I think it'll be negative. Although who knows, I'd put my symptoms down to all the pain medications until this result came back

  • Jules

    I have had similar experiences with GPs as you, one told me that I had an ear infection which was why I kept falling over.The following day I fainted again so my dad took me back too the doc's only to be told that I looked like death and too take me too the hospital. I was told that my blood levels were so low that if left any longer I would have died. They ran so many tests on my blood I started too feel like a pin cushion, but I was finally told that I had pernicious anemia. They also found that it looked like I had had it for 15 years without it being discovered or treated so I understand about the feeling like a hyperchondriac I completely understand, even my own parents treated me like one.

    Since I was told about my pernicious anemia my granny was told that she had it and it was listed as a cause of death on another family member's death certificate. It is called a "famillar" illness which means that not family members will get it but some are more likely too suffer with it than others

  • Hi Penni, interesting you say about the family link. My sister and dad both have thyroid problems and my dad has ME as well. Theyre both going to request tests for this given the similarities of symptoms and the fact they haven't been tested. Auto immune issues do seem common in my family

  • Hi Jules, I am absolutely THRILLED to meet you! I have TN and in desperation I went to my doctor and asked to be tested for B12 deficiency. This was because I had read about (tenuous) connections between the two. We tested it and found that I was in the 'grey zone', i.e. not technically deficient by British standards, but low according to Japanese standards and some B12 experts. After getting a dossier of info from the helpful folks on here I managed to get my doc to treat me, and, as of today, after ten months of TN pain that strong anti-convulsants couldn't 'cure', I seem to be entering into a period of remission. This was brought about ENTIRELY by B12 injections.

    I would recommend that if you have an actual proven B12 deficiency you don't accept waiting for retesting unless it's because they want to do extra tests and they are trying to establish something important, but you should at least get to know what that is! Don't accept time delays on this one; it's too important.

    I was very insistent - to the point of tears - with my doc because I was terrified of the consequences of TN, and I am glad now that I was. Before I had the injections, my outlook was very bleak indeed - B12 injections gave me back hope, which is priceless. Sorry if I sound like an uplifting health advert but you'll know how awful TN is - it's like a death sentence, no exaggeration.

    I know you will be less than thrilled to meet a fellow sufferer, and will wish you were not one of an elite you could live well without, but it's VERY rare to find a TN sufferer who is also on the B12 path. But it's actually an old area of medical research, going back to at least the 50s, and it's a (not so well) known fact that B12 helps TN pain, at the very least, but I feel sure that TN IS an autoimmune related disease and B12 is part of that picture.

    I just discovered today that I have subclinical hypothyroid. I really didn't expect that and had only asked for thyroid tests to eliminate it. It's made me more convinced than ever, however, that TN is part of an autoimmune package. I can't urge you strongly enough to get your B12 treated as aggressively as possible. It might just save your health.

    If you feel up to it, I'd love to find out about your TN and share info to see if it helps either of us throw light on our condition/s.

  • You really didn't need thyroid adding to the TN, did you? :-(

    I am an utter sceptic about subclinical - I was diagnosed the moment my TSH went over local range - because I had a set of slowly rising TSH results. Pretty much unarguable. But many don't get treatment even then. My amazement is that even several years later I keep remembering things I used to get but no longer do.

    Feel welcome to hop on over to Thyroid UK - lots of people crossover. I think low B12 is pretty common in hypothyroidism.

  • Hi Helvella, thank you for the welcome package I could do without! Only teasing, but I really don't know what to do with this result. My doctor has given me such grief over my mad unproven theories of my TN being part of an autoimmune condition and now here I am, proud possessor of a completely unwanted and unexpected thyroid deficiency, however 'mild', and I don't know what it proves, if anything, but it IS one of the autoimmune pack and only strengthens my belief that that IS what's going on, somewhere, out of sight. I have come to an avenue of research that I so wasn't expecting I have no idea where to even start.

    I was a member of the thyroid forum, briefly, when I was considering if I should dare ask my doc for the tests (oh, the irony), but I stopped it again because a) I got so many emails and b) because I was sure the test would be negative, so why stay? Again, oh the irony.

    I admit my first thought was 'Is there any connection between B12 deficiency and thyroid?' and I can't think of one. None. I can't imagine why one would lead to the other. At all. See what I mean? I need to research.

    It wasn't my doc who gave me the test results, which was great, for two reasons. One, it gave me a chance to research before I have to face him down and Two, because the 'stranger' doc was of the opinion, unspoken but inferred, that if I was showing symptoms we might want to treat it, although it wouldn't normally be treated on the cusp like this (my result was 5.2, highlighted as high and out of range by .7 - but hey over range is over range.) Also my Free T4 is perilously close to being under the low range at 10 when the low is 9. Apparently a low T4 with a high TSH is a BAD thing.

    No sh*t.

    So yes, I will be re-joining, but I honestly haven't the first clue what to do. Aside from worrying about trying to deal with thyroid medication, the only other feeling I have right now is a nagging conviction that the slow apathetic decline into depression I've suffered, from my late 30s onwards, might have been due to this and I've put up with it for no good reason. Not to mention my constant harping at GPs about very dry skin and chronic constipation - all ignored. Now THAT is not a nice thought...

  • Hi Chancery

    Really good to meet you, I wasn't expecting to come across anyone else with TN when I posted this. Not many people have actually heard of it as I'm sure you've found out

    My TN was diagnosed about 5 years ago, I've been on Lyrica and Carbamazepine which I've now come off for the first time in years. I've been treated by the pain management clinic who have been doing radiofrequency nerve blocks, the last one has finally given me some relief but it's only ever a temporary thing, could last for one more day or up to two years. When I didn't feel better in myself despite the pain relief I went to the GP who dismissed what I was feeling as anxiety

    A couple of years back the TN nurse did recommend B12 supplements, said they weren't proven to help but couldn't hurt, I tried them for a while but didn't make a difference, which makes sense now I know about the antibodies

    I saw a neurologist for the first time January, he requested the blood tests or my GP wouldn't have bothered

    I've had the tests redone today along with others, I asked for a copy of the previous results at the same time and understand things a little better now, although I'm more confused on other bits!!

    The neurologist had asked for tests specifically relating to antibodies and immunoglobulin levels. All came back negative except the Parietal cell antibody level one, because of that the hospital automatically tests for intrinsic factor antibodies which is positive too

    However the nurse went to speak to the doctor I saw Saturday to fund out why they were running the tests again. The answer was that they couldn't find my other results?? On Saturday she clearly told me I was low on b12, but would run them again to recheck, but today the results aren't there. I'm really confused? But I've had the tests run again this time also checking things like thyroid, the only thing I can presume is that they didn't request all the tests they should have last time. But then why tell me my b12 was low unless either it was an assumption based on the antibodies or they checked some old results and it was low previously but wasn't thought relevant....the mind boggles

    After years being treated for the TN though it's not the first mess up and doubt it'll be the last

    I'm hopeful if these results do back things up that I can start treatment and get back to living as have spent most of the last year off work and housebound with pain and fatigue....

    Its great to meet someone else going through both conditions too, sorry though you're having to suffer. Not sure about you but I feel like I'm cursed!

  • Hi again, Jules. You are really, REALLY 'lucky' to have both the antibodies. It will make life SO much easier for you to insist on the full monty when it comes to B12 treatment. If they give you any sh*t at all you can prove quite easily that B12 causes PERMANENT neurological damage (don't let them forget that part; guilt trip them!) and you have it in spades, longstanding, in the shape of your TN. And don't stand any nonsense from them about it not being a 'normal' B12 deficiency symptom either. No-one - not even neurologists, the supposed experts - knows what ACTUALLY causes TN, so that is the very definition of a "neurological condition of unknown origin", which is what they all cite as being a good reason for giving the maximum dosage and maintenance treatment for B12. Because I didn't have those things (antibodies and obvious deficiency) I had to fight every inch of the way, and although I have TN remission (hopefully; still coming off the drugs, very slowly) and am literally sitting there right in front of them, my doc STILL doesn't believe it's related. They're all mad, in a uniquely 'educated' way, God bless them.

    But you shouldn't have any problems, fingers fully crossed. You've got a full complement of proof, so you can be as assertive as you like - you have the Gods on your side! I got 3 weeks of alternate day loading doses and saw some relief from pain straight away. I lost it again after 3 weeks, but I got relief again, even better this time, after my first bi-monthly maintenance shot.

    On the strength of that, I asked for monthly shots and my doc had come round a bit by then and didn't feel so bristly, 'humouring' me, and he gave me them, just like that. And this time - Bingo! Actual loss of pain, as in I could eat on the TN side of my mouth for the first time in ten months. It felt like I'd died and gone to heaven. I was thrilled. I've been on monthly ever since and it's all doing well. I've only recently picked up courage to drop meds, after being sure I could eat on that side and do all the things I wasn't able to, like let water touch it and go in and out of shops without pain. I was on 600mg of Gabapentin and 600mg of Carbamazepine, but I could never get rid of the pain entirely; it was always there, lurking, although I never got electric shocks any more.

    I am now down to 400mg of Gabapentin and dropping another every ten days if all goes well. I get withdrawal with each one, which is a pain. I'm right in it at the moment, hyper and with the shakes, running off at the mouth and full of tearful 'energy' with extreme exhaustion and insomnia - oh how I love these meds. I will be SO glad to get rid of them. So glad it frightens me; I'm terrified it will all go wrong. I want rid of them all, but even if I could just get down to about 400mg Carbamazepine I could live with that.

    As you know, you completely lose your personality on these drugs. I can't hold down a conversation. I panic at the drop of a hat (I used to have panic attacks if I had to go on a bus - go figure) and anxiety is my middle name. I sit up till 5am every night and still can't sleep when I go to bed, but I can't get out of it in the morning and don't get up till 2pm. The whole day is upside down, and that doesn't help the awful unrelenting depression. I'm always having to explain this to my doc when what I really want to do is yell "ARE YOU BLOODY STUPID OR WHAT?! USE YOUR %**%! IMAGINATION" when he lectures me on how I am "harming" myself by trying to find out what's causing the TN. Because, of course, sitting doing nothing, stupefied with drugs, is so not harmful to my mental state.

    Sorry, I had a B12 injection today and that combined with it being around peak day for withdrawal symptoms means I am even more hyper than normal! B12 always gives me a weird tearful surge of energy. I'm like an overwrought child!

    So... I assumed you'd had an MVD, but it's one of the other treatments you've had? Well, now that you've established B12 deficiency, that's great that you didn't have more invasive surgery. It will give you as chance to repair/improve some of this yourself. I'm not too familiar with all the TN treatments except MVD, which was the only one I thought worth having. The others seemed too 'dangerous' to me, involving possible paralysis, and having poor results in return. Let's face it, none of them are exactly removing a bunion! You've had this treatment before too? How long have they lasted, on average?

    P.S. Don't worry about all your 'lost' test results. I had to give blood THREE times to get a B12 test. Yep, 'they' lost three lots of blood. That takes special skill you know!

  • I'm exactly like you, if I sleep before 5am I class it as an early night! If I have to get up early I don't bother going to bed at all. It doesn't matter how tired I am my brain just doesn't switch off

    It was to explore an mvd I was seeing the neurologist about when he asked for these tests and a new mri first, still waiting for the latter. I was expecting the tests to be negative

    The treatment I've been having for several years is nerve blocks but done using radiofrequency, there's less chance of paralysis from the nerve damage. The best one i've had lasted 9 months, some didn't work at all. My local consultant at the pain management clinic is a TN specialist and this is his area of research so it's more a guinea pig procedure I think than something with massive amounts of documentation. But I was willing to try anything! I also have TMJ which complicated matters as it became hard as the pains were all blending, my TN is atypical Bilateral. I've had a recent op for this too as my discs had slipped out of place

    I feel like I'm collecting conditions!!! I've seen pretty much every department at the hospital over the last few years but gastro will be a new one for me!!!

    I'm interested to see if my dad and sisters doctor will test them, both have thyroid issues and my dad has had ME for about 20 years. Does seem like autoimmune disorders run in families...

    I do feel lucky in a weird way that the results were positive, I'm really not joking when I say I had gotten to the stage I couldn't bear to ask for anymore help....fed up with being looked at like an attention seeker, I was getting myself more and more depressed and couldn't see a way I'd ever have a good quality of life

    So strangely this has picked me up a bit, I'm still exhausted and feeling like crap, but at least I know it's not all in my head anymore!

    Just hope they don't take a week to read the results like last time!

  • I really would recommend you also ask for a coeliac test; you seem a prime candidate to me. An awful lot of what you have suffered could be put down to coeliac, and having the parietal cell antibody I would consider a definite red flag, although I couldn't tell you why (I assume I've read that somewhere - I hope!). It's an easy test, and fairly reliable (she says, after a big fight with my own doc over that very issue). I had mine retested recently, on the grounds of inaccuracy (it's a long, painful story), but you will know what I mean when I say I am longing for it to be positive. To discover all my problems are being caused by something as simple as wheat and that I could cure them just by giving it up - bliss.

    Unfortunately I suspect I'm not getting off that easily. My new diagnosis of mild hypothyroidism makes me think the answer might lie elsewhere. I had coeliac retested at the same time as I had my thyroid tested and out of the two I'd have said I had more chance of being a coeliac sufferer - out of the two that's what I'd have preferred, but no such luck!

    With conditions like TN, you long for a simple solution. It's such a nightmare disease and the janitor's cat knows more about it than the average neurologist - anything straightforward looks fabulous!

    But your history and malabsorption problems make you a much more likely sufferer than me. Have you asked round to see if anyone else in the family has it? It's possible that they do, undiagnosed. Anyway, that's one that I'd get in quick, while you're on a roll. Again, guilt-trip them. After all, they were inferring you were a hypochondriac - the least they can do now is give you the tests you want.

    Incidentally, you don't have to have gastric problems to have it - it strikes all over the place, particularly in adults. It is a real chameleon disease. It's worth eliminating, if nothing else. Then you'll know better what you're dealing with. Knowledge is power and all that!

    But you have bilateral ATN? Oh, what a nightmare. The last time I had a crying jag at my doctor's - I've only done it twice, honestly, both times because he made me drag my anguish out in front of him just to prove a point. I don't mean I cried to impress him! I mean he cornered me into talking about the psychological problems of the illness and it shames me so much that I always start crying. I hate it. As I was saying, the last time I had a crying jag I remember saying to him that I dreaded becoming like one of the poor souls who had bilateral pain. I cannot imagine that. Actually I can, which is why it fills me with horror.

    I am a classic TN pain sufferer - good old type 1, without cause, clean MRI. Yours sounds as if it is related to the spinal and TMJ problems. But who's not to say that that degeneration isn't because of your autoimmune problems in the first place, causing degeneration? It certainly is as far as the myelin sheath is concerned, in my opinion. But I would definitely insist on holding fire on your proposed MVD until you have at least two months B12 in your system. That's a whole undiscovered facet that needs to be dealt with before someone takes a scalpel to you

    I'm only quoting 2 months because that's how long it took me; it's the only point of reference I have. But I wouldn't have brain surgery until I'd given that some time. Brain surgery is some serious sh*t - you don't want to take that on till you've given your body a chance to do nerve regeneration. It's a scandal that they let this get to this stage for you, especially as you suspect they may have ignored previous blood tests. Do you reckon that's why they've 'lost' them then?

  • My sister mentioned coeliac to me as a friend from her work had this diagnosed after low b12

    Regarding the test results I might be being suspicious but I've been right every time I've had the feeling that something was off before

    I don't think it was what they said but rather what they didn't. The doctor definately told me my b12 was low, but the neurologist didn't ask for standard tests just specific antibody ones. When she said she wanted to rerun the tests to be sure I didn't think that was odd until people on here said so. This time the number of vials of blood they took was more so definitely testing extra stuff than last time. I do think that maybe a previous blood test result could have shown me as borderline and they didn't think anything of it at the time. Maybe that's what they've checked it against hence the need to 'redo' the tests. This bit today that the doctor told the nurse they were missing results made no sense to me as everything the neurologist requested is listed on the print off I asked for...

    When I get the results from this back if it does show low levels I'm going to ask for my historical results, the last test I had was a long time back and if it was borderline and they didn't tell me (or monitor it) I'm not going to be a happy bunny! I regret never asking for print offs in the past, but you live and learn!

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