Myasthernia gravis

Hi I have searched on here has anyone actually been diagnosed with the above? After a year of my double vision getting worse and keep changing prisms every 6 weeks optomologist at hospital now thinks I possible might have Myasthenia Gravis so now testing for it. It's got to the point where I have to prise open my eyelids when I wake up so it's another auto immune problem . Blood tests are (Musk) antibodies and Acetylcholine Receptor Antibodies but it isn't linked with Hashimoto'so and PA I'm told does anyone know about it?

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  • I'm sorry I don't know much about it at all except it is another Autoimmune Disease but this is a link which may be helpful. I think you have to be referred to a Specialist.

    ninds.nih.gov/Disorders/Pat...

  • Thank You Shaws.Yes it is another auto immune

  • I believe it can be a serious condition so you have to be referred to the proper specialist. EllaRuby has suggested a neurologist. I'd see GP soon for referral.

  • I Will Shaws I've got my head around Hashimoto's more now only Thanks to all the knowledge given on here and PA site don't know where I'd be

  • I have Myasthenia, Hashimotos and pernicious Anaemia, a few others too! When I was first diagnosed with a thyroid problem, back in 2007, literally 4 months later my eyelids drooped. I tested negative for those antibodies but the single fibre emg test showed something, can't remember what exactly and I was found to have thymic hyperplasia on a ct scan.

    As Shaws said you need to see a neurologist.

  • I've just read that those tests ive been given don't always show positive but you can still have it I have PA and Hashi too is it true Botox is the first type of treatment that's what was said today to me I'm losing confidence in this hospital with my eyes I told them ages ago changing prisms all the time are not working... my double vision fluctuates on a daily basis and now can't open lids in the morning just glad they caught me on a bad day with this double vision no prism change today.

  • Botox has never been mentioned to me. It's seems to me it would be the worst thing for myasthenia. A side effect of Botox in a 'normal' persons forehead can be droopy eyelids!! I was prescribed a course of steroids and mestinon.

    There is a myasthenia group on healthunlocked.

    Good luck hope you get some answers soon X

  • Thank you for your reply I'll be looking into the tests you gave if these prove negative can't face another year of no diagnosis and treatment

  • Hi Momo1948,

    I too attend hospital vision clinic, who have been brilliant, for double vision and the temporary prisms on my specs. To me my eyes feel loose in their sockets. 😀 Odd me! Several times MG has been mentioned over many years. As yet not proof of it. My blood tests do not show it. You should ask to see a neurologist.

    I just wanted you to know that you're not alone having these symptoms. Like many I have the Hashimoto's and PA plus vitiligo, of course all autoimmune.

    All the best, GG

  • Hi glassgirl, Thank you... at least I wasn't sent away with another prism I'll await results and also ask to see a nuerologist prising my eyelids open every morning is a recently new symptom

  • The hospital prescribed me drops for dry eyes which has helped. As soon as I get tired my eyelids droop and I look awful.

    Hope you get answers soon. GG

  • I have Thyroid Eye Disease and my opthamilogisy said don't ever have Botox as it will make your eyes worse. I have 1 bulging eye and 1 droopy eye. May have to have corrective surgery once it's burnt out. Auto immune disease! I have Gashimoto's disease and hypopituitarism too. X

  • Hi Rita D I have no intentions of having botox which I told optomolgist as soon as she mentioned it as my thoughts were the same as Ella Rubys comment I've been under this hospital a long while so i will get a 2nd opinion with a neurologist Thank you for replying...

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