Hello everyone I have been told over the years that there was a good possibility of me having myasthenia due to ptosis of my eyelid, exotropia, exophoria, double vision and debilitating head drop syndrome and some other things as well.
but my neurologist is telling me that the nerve conduction studies I have done including EMG were all normal. Are they a definitive answer?
Not sure. Did they find any antibodies? I had some signs in the nerve test but not enough to be diagnosed. I only had ptosis which has resolved on NDT so I suspect my symptoms were due to under medication of thyroid hormones, not MG. I had no antibodies but 30% with MG have none detected. It can go into remission as well.
I have OMG I am negative for all tests but having tried mestinon tablets I had a positive response so since they worked and only do so for OMG I am still considered to have it.
That’s most interesting. What are the symptoms of OMG? My eyes are really playing up of late.
Ptosis and Diplopia mostly.
I don’t have the ptosis now. I did wonder if mine is TED. I thought I had it when I first got diagnosed with atropic autoimmune thyroiditis which is more like graves initially but it burns out to hypothyroidism with occasional overactive bouts until the final dump of the thyroid’s thyroxine- it was not very nice! I didn’t get treated until after the last phase and I was very ill indeed. I was never diagnosed with TED but I had double vision, bright light was hellish and I saw terrible star bursts around all lights. The ptosis started up after being treated with Levothyroxine. I just wanted a Botox injection to get the eyelid back up again cos I read it was the treatment for it. It was never once mentioned. to me as a way to improve it. The nerve test reminded me of Frankenstein with those involuntary twitchings - it was very weird I had a huge black eye afterwards too. Now my eyes are puffy and swollen the corneas swell up I am plagued by blepharitis and Dermodex mites. They look crazy and staring which is a bit worrying. I think there must be an underlying reason for all these problems but no one at the opticians is interested in finding out what could be the root cause. I read you can develop TED years after even if there’s no functioning thyroid gland (mine shrivelled to a tiny crisp and the endocrinologist said it was highly unlikely to have any function whatsoever) because it’s related to the thyroid stimulating antibodies which can still attack the eyes.
My eyesight is ok with correction so that’s a relief.
I don’t think I can have MG.
Lems?
Interesting suggestion it certainly fits with my symptoms. Thanks for that info
have you had bloods for mg, thyroid and mg often together. I have ptosis fluctuating 5 years and terribly ill for 3 of them and fluctuating hypo hyper. Have you seen ophthalmologist or just optician? good luck with finding help
They did test for MG antibodies and it was negative, thyroid gland is defunct I have atrophic autoimmune thyroiditis so there was never a goitre I was hyper for a lot of time but didn’t realise until later I’d get short bouts of hypo and these slowly swapped over. I’m permanently hypo now and take NDT but my eyes are not right even now, I suspect it’s mild TED. It’s as common with AAT as with Graves’ disease (c33%) which AAT mimics in many ways. It (TED) can start up years later too which fits with my suspicions. Found opticians simply not interested I’d have to get GP to refer me to eye hospital. I did have to go for vitreous detachment about a year back - I read later that one happens with TED too - They never mentioned it. I should have asked.
I also have a weird lump in my neck which they say is a normal lymph node but it only just appeared a year back so how it’s normal is a mystery to me. But it has been ultrasounded and it appeared normal on that. I was worried as there’s a high incidence of non Hodkins lymphoma in my close relatives and Leeds genetics dept said I stood a higher chance of getting it and to always go to GP about any lumps or fevers. I guess it must be nothing of any significance but I’m sure it’s getting bigger. It hurts if I dry my neck with a towel after. A shower and I press on it, I sometimes think it’s making swallowing hard if food is soft, but otherwise it’s of no consequence.
Your pattern sounds very much like what I had - like being on a roller coaster. The ptosis only started on Levothyroxine. NDT helped but occasionally I find it’s there on waking and one of my eyes is hard to open it does wear off tho once I feel properly awake.
I hope you got the swings under control they can be very disconcerting, mine became very severe before my thyroid totally packed up & I was in a very bad way. I’m a lot better now thank goodness These things now are minor irritations compared to what I suffered back then.
you have had much going on im sorry to hear. It's a minefield with problems and so many symptoms fit so many things. I was struck with ptosis and weakness at same time and followed by progressing 3 years of hell and multitude of symptoms, and awaiting appointments that didnt happen. A 5 day high dose of steroids helped some things last year mainly inflammation and skin but ptosis and weakness and other problems remain undiagnosed, but fear not because difficult to diagnose but lack of care and attention needed for diagnosis.
I lost most of my eyebrows and body hair at one time and urine was terribly dark and felt awful, then when I was feeling better after a time I got a thyroid panel privately and my tsh was said to be high at 4.2 but I wish id got tested at height of problems. steroids seemed to correct it 🤷♀️as after it was 2.7.I had chest swelling and swollen neck glands but never seen by doc and wonder if thymus or thyroid, I had a chest X-ray but I think the thymus wouldn't be seen on that 🤷♀️. I dont pretend to understand thyroid. I had one lot of antibodies test but not for musk for mg and this was all previous to my worsening state and the steroids did not help the ptosis. Ice opens my eye temporarily and im hoping for this test to be done by ophthalmology next week. Its not damage as sometimes does open on own.
Im told everything is fibromyalgia but totally unfitting to me and to fibro sufferers and my gp is not worth a light so plod on where I can.
I would keep getting seen for the lump if you find its getting bigger and get another opinion, we have to be our own advocate it seems and preventative medicine needs to be better rather than waiting until we are very ill and damaged.
so pleased to hear you are better than was and look after yourself 🙏best wishes
I found NDT stopped the ptosis so suspect it was lack of T3, as I am a very poor convertor of t4 to t3 so Levothyroxine was never going to give me enough. To function properly. I had that Frankenstein nerve test which came back inconclusive some ocular muscles were compromised but not enough to say it was MG I don’t think I have it to be honest or it’s in complete remission.
4.2 is too high for TSH, in some places they treat with thyroid hormones at 3.5 but here , if it’s over 5 you can fight to get it, over 10 they should be prescribed but some sadistic doctors insist on TWO tests over 10. I’d like to see how they’d like it they deserve a slice of living hell. The eyebrow loss is a clear sign of hypothyroidism plus skin problems. Some more sane old school doctors believed fibromyalgia was just hypothyroidism but the ones in it have a vested interest as it’s their baby. It only appeared to any extent after Levothyroxine took over from NDT, which speaks volumes. Most of them were vilified and struck off, yet they made their patients better! What kind of a medical profession is it that rewards those who are deliberately keeping women ill - either by intent or through ignorance and refusing to listen to their patients - and removes those who make them well again?
I hope you get some answers.
You’re right re the lump I think I was supposed to go back after 3 months but all they do is blame the NDT for any problem I have - they should have seen me on levothyroxine if they think I’m bad on NDT! I’d like them to explain if it’s so marvellous why it made me feel so ill they won’t even know about dioadinases or how it all works, yet NDT has given me a life worth living so it really annoys me and I might loose my rag with it. I’ll deffo give them a piece of my mind it they so muchas blame NDT for anything else. I think my ticker is slowly failing but half my family died of CVD who never so much as sniffed a grain of NDT so it’s probably down to a genetic predisposition and the fact I was left to rot with supposed “menopause symptoms - oh no it wasn’t my thyroid so they told me - stupid idiots, that’s exactly what it was! No more the menopause than a green cheese moon- that my heart got damaged in the first place with my thyroid hormones yo yoing wildly from nothing to very overt I was lucky I didn’t have a heart attack - and I can’t think it’s helped. So I’ll be ready with that if I get any more NDT nonsense. Trouble is they ought to investigate with an exercise stress test not just an ecg cos afib comes and goes. I did a huge amount of competitive sports and I read it means a 5x higher chance of getting afib but they never even consider that might be a factor. It’s stopped again thank god but everything feel like such a flog, it can’t be right.
The joys of these autoimmune disorders eh?
Thanks for your support
Obviously I'm late to the party. I'd been putting up with proximal leg weakness for 2+3 years, much worse in the hot weather, so much I stopped gardening in the summer and let most things die, and also late afternoon fatigue such that that by 3pm I couldn't get out of a chair/off my sitting stool without pushing off with my arms, and by quitting time @6pm I was angry, but not concerned. One summer, I thought about getting blood tests for MG at an Urgent Care - my mother has Ocular MG- but didn't. One evening as I was leaving work, I noticed 2 identical cars approaching me from the left, that merged in the center, and I knew how to deal with it, but I couldn't ignore it. The next day I saw my ophthalmologist, who impressed me with her exam, and said "This must be MG!" She Set me up for blood work and brain and upper spine MRIs and I saw my wife's neurologist shortly. During the exam, we re- produced my double vision, but I was shocked when he easily pushed down both of my legs flexed at the hips with just one finger! Damn, I thought. He reviewed the ophthalmologist's labwork and MRI and supplemented the labwork and ordered the EMG. ALL ANTIBODIES were NEGATIVE, MRIs and other labwork unremarkable and I had a NORMAL EMG. He ordered a Single Fiber EMG test which was specific/? sensitive for MG and it was (+). His partner was trained to perform the test which otherwise might not've been available. I'd had the disease for years but had only 1 positive test. (My mom was Ab(+) on first test after just weeks of double vision.) Now I have a positive Ach receptor Ab test, so I can get Vyvgart infusions to treat it, since I'm getting significantly worse this summer despite Cellcept and prednisone.
