I am somewhat confused. I was diagnosed with Fibromyalgia a few years ago and as I was aware of Myasthenia Gravis due to my dad having the condition I asked to be tested. I realised some of the symptoms for each condition were similar and I had also noticed my right upper eyelid was drooping down. The neurologist didn’t think I had Myasthenia when he examined me but sent the blood test off just in case and to rule it out. My test came back positive. This was repeated a fair few times and each time I tested positive for the antibodies. I was started on Mestinon fairly quickly and felt an improvement in my energy levels. I had nerve tests which came back normal. Two years later I went back to see the neurologist again and this time he said he didn’t think I had the condition, that he thought i was getting false positive test results as my nerve tests had previously came back normal and my blood test was mild positive. He decided to do one final blood test. After this I received a letter explaining the lab that carried out the tests had changed their diagnostic parameters for diagnosis and I was no longer considered positive and to stop taking the medication. So basically my blood test result is the same but no longer meets the criteria for a positive result as the lab has changed the criteria. I’ve been taking this medication for two years, and changed my driving license to a medical one to now be told I don’t have the condition. I just wondered if anyone else had ever experienced this. It also said said the drooping upper eye area was probably functional in nature. I have no idea what that means.
misdiagnosis 🤷♀️: I am somewhat... - Myasthenia Gravis...
misdiagnosis 🤷♀️
Hi Blueoxo - I am wondering where in the world you live as this may be in an important factor of how you are diagnosed?
I am not very up with the latest criteria of diagnosis but would ask the following questions:- Was the neurologist you saw a specialist in Myasthenia? I was diagnosed on physical exam which demonstrated almost immediate muscle fatigue on repetitive exercise. What sort of Myasthenia antibodies were you tested for? There are at least 3-4 antibodies known for the various Myasthenias, one of them genetic for CMS - Congenital Myasthenia - strong possibility as your father had the condition. I strongly suggest you read up on the different types and the different antibody types to ask more searching questions.
Info here:- myaware.org/Listing/Categor...
Is your Ptosis permanent or comes and goes? If it comes and goes did yo take photos of yourself at your worst. Have you ever seen an Optometrist Neurologist? My diagnosis was confirmed this way, I had very bad double vision. In the UK it is virtually unknown for a neurologist to discharge a patient.
Yes your blood tests can be both false positive but also false negative. Many people with Myasthenia show negative tests and I have heard a few stories like yours. The ultimate test is whether or not Pyridostigamine (Mestinon) is helpful or not. If it is, then I would see another Neurologist but ensure they are an expert in Mg.
I suspect you are in the US in which case have you been in contact with the Myasthenia charity? myastheniagravis.org/
If in UK it is Myaware myaware.org/
You might also seek out FB pages for Myasthenia - I have to say I haven’t visited them for some time as the difference in support for Myasthenia UK and US is quite wide as is the attitude of the posters. Some find great support there but as I became stable I wanted to get on with the rest of my life>
Plenty of information on both sites.
Hi and thank you for your reply. I live in the UK and have no idea if the neurologist I saw was a specialist in Myasthenia. I will take your advice and read up on the different types. I did take photos to show him my eye. It is only one eye that is effected. Not the eyelid itself but rather the whole area doops down from the eyebrow and covers my eyelid. I haven’t seen the test results myself only been told it was a mild positive each time I was tested. He originally thought I had mild symptoms. I definitely felt a benefit from taking mestinon but have ended up questioning myself and wondering if it was some sort of placebo effect as he is now saying that I don’t have the condition. I was tested for the acetylcholine receptor (AChR) antibodies
PS - I was also told, prior to diagnosis, that my Ptosis was functional - also all sorts of guesses from 5 neurologists from 3rd nerve Palsy to ‘functional’ - which means they haven’t a clue and don’t want to be bothered to find because it would be quite difficult to prove either way. It can be caused by ageing, or be congenital or injury to the nerve - but those causes are normally permanent. If your Ptosis comes and goes with treatment - Mestinon - then it’s almost certainly Mg.
I went for myasthenia Gravis tests in Oxford. They did blood tests and some nerve test. Have you had the nerve test. I can’t remember what it is called. I had lots of myasthenia Gravis symptoms. The Dr there is a leading specialist. Turned out I didn’t have the disease. I went to see a private only endocrinologist also in Oxford. Turned out I have a conversion disorder and unable to covert thyroid hormone T4 to T3, well only 8% was converting. I was put on T3 medication trial along with T4 medication. Hey presto next thing I was walking normally and living a normal life. Quite unbelievable I thought.
It’s dreadful that you’ve been treated for a disease they are now saying you don’t have. Did you feel better on the medication they gave you or not. How do you feel currently.
hi and that’s you fo taking the time to reply and sharing your own experience. I have only ever had mild symptoms, mainly fatigue, sometimes my speech can be effected for a short period of time, literally a few minutes when my tongue will get sluggish and I feel like I’m slurring, food going down the wrong way., although no problem with swallowing in general. My arms tire and become sore quite quickly like when using a hairdryer and my eye drooping at one side. My symptoms seem to fluctuate, with periods of improvement followed by bad weeks. I felt like the medication helped but then thought was this a conincidence when coming out of a flare up. Right now I feel quite well. I still experience pain and fatigue but not as bad at the minute. I’ve never had any loss of function just my legs and arms tire quickly. My head sometimes feels heavy and like I need to rest my head against the sofa as my knock feels weak. It’s interesting what you are saying about the T4 - T3 conversion. Is that related to a thyroid condition, I also have an underactive Thyroid and pernicious anemia
seems odd you have had positive antibodies to it you responded to the medication but they suddenly claim you don’t have it. Plus your father had it and I believe it has a hereditary component.
I was diagnosed with atropic autoimmune thyroiditis I felt really awful on Levothyroxine the more I had the worse I felt then my left eyelid began to droop it was very annoying and didn’t look great. I was told it could be MG I had no antibodies but a nerve conduction test showed some signs but not enough for a definite diagnosis. It was horrible they wired up my eye and made the muscle around it twitch it felt really weird. I had a black eye after too. Eventually I decided to try NDT and the ptosis miraculously disappeared along with loads of other horrible hypo symptoms. So mine was down to lack of T3 and nothing to do with MG.
The state of medical care in the U.K. for these autoimmune conditions is really disturbing
thank you for your response, it was very helpful. I have an underactive Thyroid and yourbthe second person that has suggested it could be something to do with T3. Think I will go and speak to the doctor about it
do you know what your free t3 levels are? It should be stop third of the range, ditto free t4 and TSH between 0.2 and 0.5. On Levothyroxine my free t3 was rock bottom but the other two were in those values and I felt dreadful. On NDT the T3 is spot on free t4 is towards the top of the range and my TSH is suppressed. I feel a lot better and the ptosis evaporated after a few months on NDT. NHS rarely test for free t3 but you can get a private test for it. Thyroiduk have a list with discounts. I get a full panel with vitamins and minerals I used to use thriva but I think I’d use medíscape (or similar not sure I’ve got the name right) or maybe it was blue horizon. They are about 80-100 quid so not cheap, you can get a basic one (TSH/free 4 /free t3) for a lot less dosh. If GP tests the vits etc you could just do the basic one. I find it useful to see what vitD, iron etc are up to
if you had the values you could do a new post on here to get advice on what the results might mean and it could help in discussions with your GP - if you have one that listens
good luck 🍀
Examples of Functional DisordersA non-organic disease is typically referred to as being functional, meaning that there are symptoms of illness but no clear measures by which to make a diagnosis.
The absence of measurable biomarkers doesn't mean that functional diseases don't exist; it simply means the causes are unknown (idiopathic).
I had that kind of diagnosis and you don't want that. They send me to a physio/ ergo and they said it's real symptom but everything is in my head. I can get free of ptosis, urticaria, everything just by exercise and willpower (with psychiatric help) sorry but i think it's bullshit. I saw a rhumathologist that was really suprise to see that and it stay in your file like you are crazy and invent all your symptoms. They don't want to say that they don't know and don't want to do more test so they now put you in thd fonctional disorder unless you can prove them wrong. The women told me my ptosis at 36 is just normal and esthetic. Because it's not always dow i cannot get it fix. And it's almost follow by fatigue and muscle weekness. She said that is because i link bot of the symptom together each time i'm gonna get ptosis i'm gonna feel tired. I know the brain can be powerful but sometime i can get rally mad at some assumption like this. Now i have urticaria to exposure to sun. It's because of my brain too? Functional disorder is now the easy diagnosic when they don't know and doesn't care i think.
I feel for you and agree. I have had a few tests but they refuse to do eye test and I have other symptoms ,uticaria being diagnosed as one that has been present for 7 years and as antihistamines did nothing that was that and no further help offered though insist utaicaria. they tell me they dont know to give a diagnosis ,they dont tell me im inventing it (to my face) but offer no testing and everything is hypercritical what they do say. they told me to meditate.😡I am no doctor but so sure with fitting symptoms I have mg and I believe the other problems came with it. The healthcare in uk which was once pretty good and supportive is now through experience non existant and everything seems to be in your head according to them, mostly if you are a woman. If I am crazy then I always have been but funny not mentioned until I got symptoms and with symptoms regularly coming and going then surely they'd be there constant, the ptosis comes and goes as with the debilitation of breathing and muscle weakness.best wishes
Did you have test with neuro? They test me with needle in my face but it wasn't positive but not negative either. You can try an eye specialiste. It's frustrate that we need to hope the symptom get worse for them to realise we were saying thd true. It what happen to me. Had to get so many problem at the same time. And i saw a really good rhumathologist. He diagnosed me with my symptom because all the test were negative. Started treatment in december and i'm living again. With need to be persistant. Good luck.
yes had the nerve test in face and I haven't seen results but they said its ok. On one hand good but the test is only as good as the person doing it and even so they said negative and thats that they lose interest yet like you so many problems at one time and no help. ice temporarily opens my eye and not everyone who has the tests are positive plus its what everyone at hospital suspects but wont diagnose because negative tests yet all fits and they have no other answer and even said they dont know enough about myasthenia to diagnose then hell send me to someone who does but they wont. I too just want a life back ,there's no rhyme or reason for why I suffer I cant put it down to anything I do or eat etc but it just fits in with myasthenia.If not then I still need to know why and it cant be stress as doesn't fit with the way it opens and closes and breathing etc as im not permanently stressed but this condition is. what treatment did you start ? im so pleased for you to find the help. the nhs is in such a state I doubt ill get the help but find this so difficult to live with.thankyou for replying
thank you for your reply, that’s really helpful thank you
you have my sympathy. I have no diagnosis but neither have I seen a specialist in myasthenia.For 5 years I have suffered with as you the whole brow and eye droop which does at times lift but on the days it does if I move it it just drops again and the days I can spread my fingers apart if I clench my fist a few times it all closes again my weakness comes from exertion but I have had times when better the longest being 4 weeks.
I was given a high dose trial steroids which helped some other symptoms but not my face and weakness and not been seen since trial and am appalled as ended up when finished short course in a and e not being able to breathe properly.
you sound like me in symptoms and I fear as five years no diagnosis and five years ago I was told fibromyalgia and if you dispute it doesn't fit it then turns to fnd. moving parameters to me sounds like a uk cop out like moving parameters so people don't fit for diagnosis and costly help 🤷♀️ I as you have thyroid problems high tsh or did on last testing but gp says I have too many problems at once to deal with. From what ive learnt myasthenia can be linked with thyroid 🤷♀️ id try and see a specialist, I know I want to when I can even to rule out if not that but it seems fitting or mimic but don't start doubting yourself or how you feel, you know what helps and you know your body, and if not myasthenia ,yet have these symptoms then a realistic alternative diagnosis is needed.
is your forehead eyebrow area smooth that side?
I wish you well as I relate, and please let us know how you get on but don't doubt what you do know and feel they need to diagnose on symptoms not on what box they want you to fit and doctoring seems replaced with just test results and test results are guides to aid but 🤷♀️
best wishes 🙏
Thanks for your reply, it really is frustrating. I dont really know what to do as the person who gave me the provisional diagnosis was a neurologist. This was the same person after two years who then said I don’t have it, that my symptoms are more fitting with fibromyalgia and find. I can’t really afford to go private. At the moment I am doing okay apart from fatigue and my upper eye drooping on and off. I am going to just wait and see how I get on. I figured if it is myasthenia then it will probably change as time goes on and if so I will go back again.
yes im in the same boat , I cant really afford to go private but nhs in 5 years still have no answer.ive air in my lungs, mostly so plod on.How do you feel though, do you feel your symptoms fit fibromyalgia ,or and, I don't feel I fit fibromyalgia and whilst there's so much which needs a specialised doc and not enough of them readily available on nhs I fear many are put in boxes that don't fit and its totally detrimental to health and well being. Yes you may be right but I have left mine as impossible to get help from docs especially during covid and I have suffered greatly and now still suffer but real awful times somehow got through alone but do fear long term affects and feel suffering can be lessened with the right help, its about quality of life of which ive had little but gained a little from steroids though creeping back. I just hope even if you are coping to be mindful of not waiting to get worse as I did and the help is not always available at that time. If the mestinon helped and you feel worse without id let them know that, if ok maybe its not mg but only a good doc can tell and by that I mean a specialist in the area, I have been told "we don't have all the answers", I have been told it has been suspected but tests don't show so to my thinking why not refer me to a specialist in mg who could rule in or out then look for an answer not just say its fibre or end when the answer is don't know, I want answers not a label and its got to be fitting. I think I got to three years and I went through hell now its easing a TAD, I know I should have gone to hospital a few times but didnt and luckily here to tell the tale but suffering in silence is no answer.ive been told I would be referred to another hospital as they thought was rare and waited two years for appointment then told I should have been told I wont get the appointment as dermy not able to make referral and ive waited five years to see a neurologist after facial appointment said I should be seen asap. honestly my journey is a farce so please just take care and not wait to be too ill to chase up the help which is not forthcoming especially in these times.
I am pleased you are doing ok at the moment, thats great and I hope it stays that way but if not find answers if you can, whatever it is and it needs to be relatable and fit your symptoms and treatment fit to help. I wish you all the best and
good luck
Just a little update, I spoke to my GP yesterday (Chest infection) and got talking about the myasthenia misdiagnosis. He had been asking about my breathing in general and I explained that I do get breathless and had thought it was related to the myasthenia at the time because other tests came back okay, but that I was then told I didn’t have it. He agreed it did sound odd after two years of taking medication for it and still showing positive for the antibodies that I have been discharged and told he now thinks I don’t have Myasthenias. We discussed that the lab had changed there perimeters and that I now fell into the negative range although for me personally nothing has changed. He recommended a second opinion and has referred me back to neurology to see a different neurologist.
hope you get on ok. here in uk our system is so flawed and neglectful. I have awful breathing problems and now possibly svcs linked to myasthenia and I have nowhere to go with other than emergency treatment. ive had 5-6 years of symptom progression and until I go private feel there is no such help any longer in nhs.
Shocking isn it. God knows how long I will wait to see someone. I do hope you get the help you need. My mum was in and out of hospital with breathing difficulties, often on a trolly in a corridor at the back of A and E for hours before being admitted. I do hope you get answers soon and have a better experience.
UPDATE FROM MY ORIGINAL POST
Yesterday I had an appointment with Neurology. This was with the NHS and as I explained in my original post I was referred for a second opinion. Well, when I got there it was the same neurologist saying the same as they had previously. He said that I don’t have Myasthenia as if I did, by now I wouldn’t be able to function properly. I asked again about the original lab/blood results which each time showed what he described as a weak positive. 0.6. This was the test for the antibodies. He said if I had Myasthenia it would be much higher. When I said but I do have the antibodies albeit a low number, he said no you don’t have the antibodies. Got to say I am a bit confused by this still as that contradicts him originally saying I had a weak positive, the result was 0.6 on the last test. He said the lab reviewed and changed the way they interpret the results so I no longer have the antibodies. . He said that that other tests like the nerve conduction tests came back normal. That he believes my symptoms are more likely being caused by the pernicious anaemia, underactive thyroid and fibromyalgia. I said so when I struggle to walk upstairs (lift my legs as I get to the top) and struggle to lift things up that’s due to pre existing conditions and he said yes, he thinks so. I gave the example of struggling to lift up a 2litre bottle of coke to pass to my partner and that had to use two hands, one to support the weight underneath in order to be able to lift it. I also told him I feel like I struggle to hold my head up in the evenings, I can do this but it’s uncomfortable and I rest my head against the sofa. I also get very fatigued. Anyway, he insists I don’t have Myasthenia. I don’t really feel reassured but it is what it is. He did say that he won’t discharge me but won’t send another appointment out to me either. By not discharging me I can refer myself back if anything changes. He is also repeating the antibodies blood tests and checking my thyroid function. Guess I’ll just need to get on with things and see what happens.
