How docs are missing the bigger picture

I just read a very interesting thread by Helvella (over on the pernicious anaemia forum) talking about the close relationship between thyroid and B12 deficiencies , and how docs seem to miss these related conditions (and the bigger autoimmune picture), and I just wanted to share how I discovered this, painstakingly, for myself and to recommend you never just accept a bad diagnosis as an irrevocable situation, or even a definitive truth – something that is particularly important with any condition that has the possibility of neurological (or any other irreversible) damage attached to it, because there is no back door from that once it sets in. It's not the doctor's brain (or body) which is being irretrievably fried; it's yours.

My journey through the autoimmune minefield has been done backwards. Dr Alessio Fasano, the Coeliac specialist, says that Coeliac disease can present first as a neurological condition, long before it shows up - if it ever does - as a gut problem. I believe my illness is a case in point, but not just of Coeliac disease.

When I was diagnosed with Trigeminal Neuralgia I was completely baffled as to how I could have been struck down with it. The only illnesses I'd ever had were gallstones and oesophagitis, although I hadn't been diagnosed with them separately (it was assumed it was just gallstones), not exactly brain or nerve problems.

I can't even remember how I came across the B12 connection now, I think it was TN sufferers discussing taking the vitamin as a supplement and, interested in the possibilities of the relationship they were discussing, I discovered the book, "Could It Be B12?" on Amazon, just through browsing. When I got it and read it I was struck by how many of my symptoms fit B12 deficiency, although there were plenty that didn't. But, interestingly, it was the neurological complaints that fit best: apathy, loss of cognitive abilities, depression. When I came across ONE mention of TN – a rare condition – that was enough for me. I wanted testing. And the tests were 'negative', I was well within NHS guidelines for a healthy person. But, crucially, I wasn't within B12 experts' guidelines.

I did get treatment, eventually, after much fighting, and lo and behold, two months into treatment, the TN went into remission. A 'miraculous' recovery, which my doctor still believes is some kind of bizarre placebo. That's a bit like suggesting you could cure cystic fibrosis by placebo. His belief is far more irrational than my TN being 'cured' by B12.

This got me wondering what had made me B12 deficient. Well, there were a lot of possible reasons, a very low calorie diet with little meat and no dairy for a year and a half, no fats eaten at all during that time, an operation with nitrous oxide, veganism and vegetarianism after the op, but it niggled away at me; it seemed too severe a reaction, given that I was eating SOME dairy, fish and chicken, so I started to look at other possible connections, despite my doctor thinking I was psychologically "damaging" myself to do it.

I tested, and retested, for coeliac – nothing. Finally, recently, I asked for a thyroid test. He eventually gave it to me, again not without an argument and only humouring me, and lo and behold, completely unexpectedly, another piece of the puzzle fell into place: I am subclinical hypothyroid, and, I suspect, have been for many years.

Low thyroid often goes hand-in-hand with low stomach acid, which causes malabsorption, so having no parietal cell antibodies, (which originally led my doc to dismiss my theory that my parietal cells were causing the problem), is pretty much irrelevant and malabsorption could very well be the issue. High cholesterol, another feature of thyroid problems, also explains why I had gallstones, and low stomach acid could explain why I have osesophagitis.

My point is they are all related. There IS a pattern there, despite the fact the doctor pooh-poohed me saying I felt that the whole thing was a degeneration, from my gallstones on. I said that I felt my gallstones had somehow led to my TN, and now it looks like that might well be the case. Not that the gallstones CAUSED the TN, but rather it was a degenerative progression of an unseen illness that is, as yet, still unchecked. I feel ALL of this is autoimmune, and is part of a bigger picture that I may well never be able to see let alone 'fix'.

My TN is considered to be permanent, incurable, as periods of remission are normal, and it will come back again, worse and harder to treat than it was before. But one thing is for sure, without the course of tests I asked for, without my badgering him and all the arguments and tears, I'd still be sitting on the sofa in a stupor of drugs, barely able to function. Other things that are wrong with me would have gone undiscovered until they made too much trouble, by which time they may well have done similar unfixable damage.

It's NOT a coincidence that B12 deficiency, Thyroid disorders and neurological conditions like TN cross over, but there COULD be something bigger, something – I'm guessing – inflammatory behind them all. To go all Lord of the Rings here, a ring to bind them all. Unfortunately it's like looking for a needle in a haystack, as I can testify, full of dead ends, as I can also testify, and definitely not aided by docs who actively do NOT want to engage in the process, or use any imagination in theorising what that bigger picture might be.

Western medicine is afflicted by separatism, one specialist for this, one for that, and they do NOT communicate. That is how my doc can say to me, with a perfectly straight face, "I don't know anything about teeth, my knowledge stops at the jaw" and my neurologist can say "No, you'd need to see a gastroenterologist for that" flatly and finally, when I ask him if he knows of any conditions that might link B12 to TN. There is no integrative medicine, no knowledge of nutrition, despite huge advances in this field showing that the gut microbiome is playing a not so silent role in everything from chronic disease to obesity – a man really is what he eats, in more ways than we can imagine. Until then we will just have to research, and research some more, bundling our diseases together ourselves while trying to tease out the tenuous strands between them as best we can.

35 Replies

  • Too right! MaryF

  • Hi there, Mary! Turns out thyroid DOES seem to be playing a part, and I had dismissed it entirely. Oh, the irony.

  • It was the last thing I worked out for my five diseases! It can be insidious the way the symptoms creep on.... MaryF

  • Yeah, I suspect insidious describes it exactly, since it was allegedly normal only a few years back when it was first tested (never saw the actual results). My only concern now is that it is considered too mild to treat. I don't actually want to treat it straight away but I think I will probably feel better for it if I do and I'm not at all sure I can convince my doc to do it. Ah well, no point in worrying before I come to cross that bridge!

  • I so agree with you, it is so frustrating that there is no joining of the dots and that we are sent from one specialist to another who, usually, only have knowledge in one area and will not or who are not able to consider the wider picture. It makes no sense and is like going around in circles. We need more holistically trained doctors who take us as a whole and understand that bigger picture.

  • Couldn't agree more, Rebekah. Although I doubt if I'll see it in my lifetime - more's the pity!

  • Thanks for taking the time to share your experience--very educational. Do you take any thyroid medication now?

  • No, Hifl, I don't. I've only just discovered this and it was totally unexpected - I had lumped all my symptoms at the foot of B12 deficiency and never suspected any other factor.

  • This could have been my medical history, apart from the TN! Gallstones were the first problem, followed by all the others, with a dose of appendicitis and cluster migraine thrown in for good measure. It's only looking back I can see this has all been a gradual development of autoimmune diseases. If we can see it, why can't the medical profession? MariLiz

  • Couldn't agree more, Mariliz. As the saying goes 'hindsight has 20/20 vision'. Unfortunately I really need to do better than that because this is obviously already attacking my brain. My grandmother had thyroid problems, as did her sisters, and she died of Alzheimer's. I really don't want to follow in her footsteps, so sitting about is not an option - something my doc doesn't grasp.

  • Very interesting, Chancery, and your complex history is similar to my own, though I don't have TN. I think you're absolutely correct about the lingering ill-health that results from medical compartmentalisation - as I believe it's called!

    When I read one of your recent posts, in which you described how your GP thinks the effects of the B12 injections on your TN are merely placebo, I thought that if your TN is caused wholly or partly by abnormal pressure on the relevant nerve bundle, that can result in demyelination, in turn causing extreme pain. B12 promotes remyelination. Ergo, reduction in pain and other symptoms. Or am I being too simplistic? My knowledge of TN is shallow and wikipedia-based. :)

    I'm not entirely convinced about the link between dietary fat/cholesterol and the formation of gallstones since reading Malcolm Kendrick and John Briffa on this issue. However, I think you're bang on the money about autoimmunity and consequent systemic inflammation being the likely root cause of many conditions affecting people here on HU. Autoimmunity can be switched on through an inherited propensity or environmental factors. It's a subject with which I am only just beginning to get to grips.

  • Hi Hillwoman! No, you are spot on the money with your TN, at least with the knowledge we have, which frankly wouldn't cover a postage stamp. Ask any neurologist and be prepared to laugh and ridicule. Because it's rare and because it's imbedded right in your head where they can't poke about, nobody researches it so nothing is known about it. Plus, of course, they can give you killer drugs to make it all go away, except it doesn't.

    And I agree with your reservations about gallstones; I don't actually believe dietary fat causes them, sorry if I somehow created that impression. I had them for a year and a half - a very bad case that should have been operated on straight away (I refused; a long story) so I had a LOT of impetus to research it, and research it I did. There is definitely a cholesterol link for the simple reason that gallstones are usually made of cholesterol, with a little bilirubin thrown in (and calcium if you are very special). Personally, I am more inclined to believe the carbohydrate loading theory of gallstones, wherein people who eat too much carbohydrate and overload the insulin system are more prone to get them. Like autoimmune diseases, they travel in a pack - with diabetes and heart conditions and other Syndrome X diseases, also all insulin related, so my money's on that. But it could be obesity itself that causes them, or an autoimmune reaction that is allied to gluten intolerance, or, or, or... It's another one of the many ordinary diseases about which they actually have no real idea.

    When I developed my first serious illness, gallstones, I was shocked to discover how little they actually know about lots of things. More than they know, if you ask me. Actually, I think doctors have a cheek to expect our reverence - there are more holes in their knowledge than there is knowledge!

  • Hi again Chancery. :) So sorry, I misread your gallstones theory - that's what comes of scanning too quickly. I think, as you do, the carb-loading idea of gall bladder disease makes the most sense. I don't have gallstones but I do have signs of early gallbladder disease, and I definitely have metabolic syndrome - probably the consequence of 30+ years following a wholefood, low fat, vegetarian diet. My father only developed gallstones after following the sort of diet I used to eat, because after several heart attacks that is what he was advised to do by medics. I can't quite believe how I, believing myself to be a medical sceptic, fell for the standard dietary bull for so long. Nowadays my blood sugar is under much better control.

    Wish I could say the same about my 'pack' of autoimmune conditions. I know a medic in private practice who thinks that, besides familial risk, autoimmune disease can be turned on by allergy - which she considers to be widely under- or misdiagnosed - and that any tissue, including muscle and nerves, can react allergically. She may or may not be correct, but she does freely admit to changing her mind and her practice according to what she reads and learns over time. Few medics will admit such fallibility, especially to patients.

  • Ooooh, Hillwoman, who IS this blessed medic? If I found such a creature I'd take her home, wrap her in cotton wool, and keep her in my cupboard! No, seriously, a doctor (is she?) who is prepared to a) read (my partner once traumatised a neurologist by offering to send him data we had on B12 deficiency) and b) change her mind?! A priceless creature indeed. Of course, she might just be saying that. Have you seen any actual proof?

    Know what you mean about the diet. My partner doesn't naturally love meat, to put it mildly, so I've spent all my life compromising my tastes to his - and I end up with B12 deficiency, and God knows what else, moiling around in there. I feel like the inner of my body is a mystery to me - a distressing one. It's a bit like having a child or a pet you dearly want to take care of and find years later that your idea of being 'loving' was so off the mark you were almost delusional. You've destroyed your beloved child-pet's life. You're evil - evil, I tell you. What's more, you haven't the first clue in hell how to put it right.

    That's how I feel when I'm lying awake at six in the morning, all this medical crap going round in my head, trying to make sense of it - without a medical degree. It's like doing a crossword in a foreign language!

    And by the way, all teasing aside, I think your priceless medic is dead to rights. If you get five minutes, go see the talks by Alessio Fasano on Youtube. He is highly entertaining, not dry at all, a bona fide scientific expert, not a madman in a tin hat, and he talks about the gut microbiome in a way that is fully understandable and relevant. His subject is coeliac, of course, but if you ignore that and replace it with 'food allergen' (or any allergen, indeed) you get an idea of how something we're not even aware of could be causing a terrible ripple effect in our bodies, and for years and years, unchecked, at that. Sigh....

  • Well, the medic in question, Sarah Myhill, has often been accused of being one of the foil hat brigade, albeit of the jolly-hockey-sticks battalion. She certainly seems to attract a lot of flak - precisely, it seems, for admitting to not knowing everything but trying a course of action anyway. Empirical, observation-based medicine is bad, bad, bad, don't you know? I've consulted her on and off for about 25 years for a range of problems, not always with great success, it has to be said. But that goes with this whole, poorly researched territory. At least she's trying, and she has now published some formal research into mitochondrial dysfunction.

    I didn't know whether to laugh or weep at your sick child-pet metaphor. I know what you mean, unfortunately.

  • Sarah Myhill? Thank you, I'll look her up. I'm assuming she has a website, of course. It's always good to add new names to the list of potentially helpful sources. And I can stomach a little foil-hattery if the owner is at least subjecting their ideas to scrutiny and change!

  • That's very interesting, thank you for posting. I also found it to be upsetting! To explain-I was brought up by my grandmother, my mum not able to care for me and dying when I was 5 so gran took me through puberty, the facts of life etc and shared her experiences with me. One of the earliest things I learnt was that she had PA and grew up eating raw liver daily until injections appeared on the scene. I don't know the strength but she had one a week and in school holidays I went with her. I knew she was very supple-up to her dying day she could not only touch her toes but could put her hands flat on the floor! (She died at 81). But she had terrible facial pain, could throw herself across the room it was so bad. At 35 they took all her teeth out to 'cure' it but it made no difference and she couldn't abide her false teeth in for long. I later found out that it was TN! She always wore a scarf to keep the wind off her face. So I reached puberty and so more in depth conversations of what was going to happen from grans experience. She had heavy periods, approx 10 days at a time but they stopped low 30's. Then I went with her once to the doctors because her eye brows had disappeared! By this time her hair was white so not that noticeable but the treatment of steroid cream did nothing. My dad, hating to see his mum in such pain, had read that to stop the TN they could give you an injection-this is how I've remembered it, to freeze the nerve but on enquiring was told she won't live long enough to get any benefit-this was about 20 years before her death. One cold winters day she went out and fainted. Someone rang for an ambulance and the hospital admitted her but could find nothing wrong but took her off the B12 injections as they said they could cause a massive stoke. About 6 years later she was admitted as she accidentally gassed her self. The fire had gone out so she went to light the gas poker from the stove but felt dizzy so sat down without turning the gas off. She had become very forgetful. Thankfully we arrived not long after and although we has a key she has bolted the door so we broke it down. Thankfully she survived but her once alert brain was failing and despite taking her off the B12 she died from a massive stroke. I wish then that I'd known what I know now when I think back to her weight gain around the waist, her mental decline, TN, loss of body hair-doctor said years of wearing a scarf had worn away her previous thick head of hair! the long battle with PA. She hadn't had an easy life, lost her husband in her 40's and took any work she could get to support herself and two sons then looked after me! I agree medicine is put into compartments but even today I'm not sure anyone would have joined up the dots! Sad but true!

  • Hi Silverfox, what a tragic story. And it bears strange resemblances to my own grandmother's. Although she knew there was thyroid problems in her family, and my mother always said she had thyroid problems, as did her sisters, I never remember seeing her take medication for it. I have a horrible suspicion that she maybe wasn't being treated. God only knows why.

    Like yours, my grandmother was overweight, had no eyebrows to speak of and my grandfather always used to say she'd had lovely hair as a youngster but had lost it all due to "wearing hats all the time". That seemed to be something of a myth in that era - probably from all the poor (lower class?) women who were not being treated for thyroid problems.

    Interestingly, my grandmother also suffered from 'the sighs', a sure sign of B12 deficiency, and she used to get very tired, very easily, having to have "a wee seat" all the time. She used to be vague and have an atrocious memory, which the family all made fun of, but that eventually, indirectly, killed her when she died of Alzheimer's.

    I find it depressing to think she was in a long, slow decline of thyroid and B12 deficiency and probably didn't have a clue it was happening to her. There's a terrible tendency among women, I think, to blame themselves for being tired and depressed and to not expect those things to be seen as serious problems that need treated (probably because male doctors don't treat them seriously!). But I think it's all the more tragic when my gran knew there was a problem but appears not to have done anything about it. Either that or her doctor never took it seriously - that's even worse.

    My mother always used to claim I was like my gran and that I had thyroid problems. I always rejected the idea. Looks like she might be right - worst luck. And I have to say I don't know how your poor gran coped without medication for her TN, and why, of WHY, did they stop her B12? The one thing that was probably helping her. An innocuous life-saving vitamin giving her strokes is absolute nonsense. Not getting the RIGHT medical treatment is what probably gave her strokes. What a terrible shame.

  • At the time it was probably accepted as just one of those things. It's recognising the symptoms now that is the tragedy and knowing that life could/should have been much better. I don't know how I feel knowing she wasn't the only one, angry, disappointed, and worried for the future as this was now such a long time ago and we are still struggling. Gran never complained as far as I know. She was probably so relieved not to be eating raw liver any more and of course that generation trusted their doctors. I know this particular doctor wasn't well liked. When the assistant announced in the waiting room he was on duty many walked out but for a reason I could understand. He didn't suffer fools gladly and if he thought you were putting it on he booted you out of the door but if he thought you were genuine he pulled out the stops to get you well again. For that reason I grew up trusting him. May be he didn't know what we know now. I think he had retired by the time the B12 was stopped but all my life from knowing this it didn't make sense to me. I suppose dying at 81 then was considered a good age but her sisters did better, one being a month off 93. But age isn't everything and sadly her quality of life hadn't been good.

  • I know, quality of life is the thing, isn't it? My partner's mother seems to have suffered from Grave's disease (I know, an ironic coincidence; his sister had thyroid problems too), but she WAS being treated, but very badly, from what I can tell.

    Trouble is, I suspect she had what the doctors call "poor compliance", that is she wasn't taking her medication correctly. She was terrible for popping pills miscellaneously, when she felt 'off' and of offering them to other people. She used to offer me her blood pressure medication and asthma pills. Seriously.

    But certainly she still had very bad bulging eyes and terrible sight problems latterly. The last twenty years of her life, if not longer, were blighted with constant ailments and hospital visits, then she started having strokes, which eventually killed her. But all the time I knew her she had no energy and couldn't be bothered with anything. Her life was singularly joyless.

    There's a lot to be said for quality of life in illness maintenance yet a lot of doctors seem to dismiss it. You can tell it's not their life!

  • Very true!

  • How terribly sad these stories are, and reading them silverfox & Chancery has made me look back at my own family history. My Mum died of cancer at 65, but for such a long time before she was unwell. Constantly tired, losing her hair, and complaining of aches and pains ( which the doctor told her she must expect at her age!) Thinking back she could easily have had an underactive thyroid and low B12. We also lived with my Mum's parents when I was a child, and I can remember my Nan very clearly. She lived into her 70's, but again was often asleep, had mental confusion, etc.... Maybe these illnesses can come down through the family? Is anyone researching this I wonder? MariLiz

  • Yes, Mariliz, they have a strong inheritable connection. Thyroid conditions run in families, as does pernicious anaemia (B12 deficiency at it's most 'classical'). I only recently discovered Trigeminal Neuralgia, my bête noir, is also genetic. I did a straw poll on my TN forum because I didn't believe it, and found nearly half the people on there had a relative with the disease. Talk about having to eat my words!

  • Why are things so obvious and yet are ignored. On this forum we often see folks struggling to be even tested when there is family history! Or get antibodies tested when that is a family trait. I'm sure the NHS could save money if all the full panel was done when diagnosed. My GP admits she knows very little but wants to learn. I suggested she reads this forum and hear how poorly some of us are and also see that so called dangerous treatment actually works. sadly she trained under he who thinks it's all in the mind!

  • Yeah, silverfox. But you'll notice that when docs are making a diagnosis they use family history to back it up, nodding as if to say 'Well, that clinches it. I'm right.'. Odd how that when they need it it's relevant, but when you want tested for it, it's bunkum!

  • That's true! I was told at some point in my life never to tell a doctor what's wrong with you! Be more subtle and make him think it's his idea but that's not easy! Trouble is they don't ask the right questions or even any questions so it's difficult to lead them anywhere. Logic tells me that if I was a doctor and hadnt a clue I'd welcome a my mum's got _____ I'd want to try a test just to eliminate etc but doctors should never have been told to oversee a budget, they aren't accountants nor should they be expected to be. A lot of medicine is being able to think outside the box and act on it. I have taken 100mcg some days and 125mcg others but all in 25's. Recently I've gone over to Taking 100 as one tablet in my attempt to lessen fillers but at the same time someone posted on her the costs of the different sizes. I've cut my cost down by a third. I know with Levo we aren't talking about a fortune but doctors seem aware of the expensive drugs but not the savings they could make elsewhere so that's not responsible budgeting. I seem to remember we were at fault for asking for antibiotics for a virus not doctors for prescribing. Sorry gone off a bit at a tangent but the point being the excuse is that tests are expensive and yet money is being wasted elsewhere. if a parent has a problem you have a 1 in 4 chance of it being passed on. Surely that deserves testing particularly if you show similar symptoms. I've always thought the real reason why they don't test is that many have no idea how to treat it!

  • Yes, I've noticed more and more over the years that doctors don't ask questions, don't do physical exams, and just sit looking a bit bored and distracted while you stumble through your spiel, hoping to gain their interest. In the past, I've met a few doctors who were genuinely interested in my family history of ill-health and tested or examined me accordingly. There is so much dependence now on The Blood Test, you wonder why they bother to see us at all, instead of just booking us straight in to a phlebotomy service!

  • Oh Hillwoman, you deserve an Oscar for that summation of the indifferent doctor who addresses the computer more than the patient. I have been in the stumbling spiel situation so often I can actually feel my self-esteem crumbling just by association. And straight into the phlebotomy service? You should keep that idea quiet, because that is probably the finest money-saving suggestion the NHS has, thankfully, so far never heard of.

  • Oh, I hear you, Silverfox. Sometimes with doctors you can predict EXACTLY how the 'interview' is going to go, word for word. And it does feel like an interview, as if you are a candidate along to prove you are actually capable of having the disease. I sometimes hate when they do ask you certain questions and you feel obliged to be truthful because you just know he's going to use your answer as an excuse to discredit your concerns, or just you!

    One of the other ones they use is the 'classical' symptom - you know, like B12 deficiency means you must be anaemic. If you're not anaemic, heaven help you. It's like trying to pull teeth getting them to listen after they've 'proved' that. For some reason they slap down the 'classical' symptom as if it was the winning card in a poker hand, as if no illness ever presented with odd symptoms. Even when I was kid I remember getting chickenpox oddly and my brother got scarletina strangely too (sorry, I think that's its right name - it's the less dangerous scarlet fever).

    And I get the drug expense versus tests argument completely too. They get really insane on that one. I had a major fight with my doctor over getting B12 injections (very cheap, no side effects) while he was doping me with TWO anti-convulsants (very expensive, horrendous side effects). The B12 worked (so far) and the anti-convulsants couldn't cut it. That makes no sense, financially or in a first-do-no-harm way either.

    And testing for reassurance when you have a lot of relatives with the disease seems sensible to me IF you are presenting with symptoms. I mean, who the hell would turn up at the doctor's surgery wanting tests just on a whim? You really do have to wonder sometimes if they think before they open their mouths.

  • Gallbladder disease is linked to thyroid disease. I was told this by a naturopathic doctor. It's sometimes one of the first diseases one gets before being diagnosed with hypothyroidism.

    I had it in 1991 - 1995.

    But way before that, I had a very low heart rate, 42, and a low blood pressure, 98/60.

    I found a great book on hypothyroidism and how it affects the body. This is the first book I read on the subject.

    Hypothyroidism: The Unsuspected Illness, Low Thyroid Function - How it may be Affecting Your Body, Your Emotions, Your Life by Broda O. Barnes, M.D., Ph.D. & Lawrence Galton.

    I can't recall if I also read the gallbladder connection in that book too.

  • Hi Liony. Yes, I've read several places now that thyroid and gallstones are linked. And thank you very much for the book recommendation. It's always great to get good book tips; it saves a lot of time (and money!) reading books that are not up to scratch. Going to go look it up now. Thanks again!

  • You just described everything I've been dealing with!!! I am going on my 3rd neurosurgeon for my TN. Now they want to drill a hole in my skull to put a mesh screen around the damaged nerve. But just hours ago, I get a call to tell me my MRI shows no damage to my trigeminal nerve, but still want to proceed with the surgery. ....even KNOWING my T4 count is low.. (hypothyroidism)...WTF?!?! Shouldn't I be seeing thyroid doctor? I feel like I've been spinning my wheels for 3 years now..and getting NOWHERE FAST!!! I am MAD & VERY VERY ANGRY! ! It's only my life they are all toying with!!!! ...and I still feel like CRAP!

    Thank you for your post.

  • Have you had B12 tested? Have you tried any B12 supplementation?

  • I have not, but I have an appointment with my GP tomorrow and I will definitely be asking him that plus many other questions. Thank you for your reply and advice. You know it is so odd that one has to resort to going to complete strangers who will listen and understand what you are going thru. Seems all I do is cry and family & friends are so disinterested in trying to understand what is going on. The 1st sentence out of my mother's mouth is always. .."What's wrong with you now?!" ...not once show any kind of concern. I am so GRATEFUL to this site & your reply. Thank you so much.

  • Hi Lorilee, sorry to hear you are still having problems. That said, an MVD (I assume that's what it is) might be the best option for your TN. It's certainly the most curative, the way things stand now. Are you having problems getting meds to work for you? Is that why they are suggesting it?

    If you decide to have it, just make sure they know you have thyroid issues and arrange to have B12 shots after the op, if you think that might be a problem area for you.

    It's normal to go ahead with MVD even if they can't see any compressions on the MRI, because it's assumed they're in there anyway. Usually they do find them during the op – thank God!

    What is it that you think is being overlooked, or that would make MVD a bad course for you?

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