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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Hi,
Sorry to be a bore, but my last thread has gone a bit off topic and I am in some need for answers. Rather than quote the whole post my eye symptoms are Double vision - which resolves with one eye shut Nystagmus - relieved a little by mestinon Ptosis - resolved with the application of ice or consumption of mestinon Blurred vision Photophobia - having to wear dark glasses indoors at all times Eye that just decides to go and out of focus randomly Visual field loss I also have issues swallowing and choking. I have muscle fatigue and can not do repetitive movements. I can't walk on my heels and then walk in tip toes or vice versa. Can anyone tell me if this sounds familiar. My first post is titled "hi guys" Thanks Rach x
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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#2 | |||
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I have all of the above except photophobia. I also have severe tinnitis, hyperacusis and balance issues. Sounds like MG to me.
Is your general weakness improved by rest and made worse by heat? I am severely affected by the heat. kathie |
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"Thanks for this!" says: | rach73 (07-06-2013) |
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#3 | ||
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Thank you Kathie,
I am affected greatly by the heat. Its makes my postural orthostatic tachycardia worse and makes me prone to fainting. It also makes me feel very weak and breathless. I have tinnitus also, partly due to the fact I've got glue ear at the moment (fluid behind my ear drum). I had tinnitus before this but its made it much worse. My gp said he believes the problems with my sight are a muscle and nerve issue. I think they (all my drs) are freaking out because basically from 2010 they all said no it wasn't MG. The fact that mestinon actually makes me feel alive and resolves my ptosis was put down to the fact it increases my blood pressure and my ptosis must be being caused by that, as all tests as far as they were concerned were negative for MG. My symptoms now are 100 times worse! At least they rushed through a neuro opthalmologist appointment for me. Thanks again Kathie Rach x
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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"Thanks for this!" says: | cait24 (07-06-2013) |
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#4 | ||
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I've had all those symptoms and more.
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"Thanks for this!" says: | rach73 (07-06-2013) |
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I have all of the above mentioned symptoms except photophobia.
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Celeste |
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"Thanks for this!" says: | rach73 (07-06-2013) |
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#6 | ||
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I have also had all the eye symptoms you mentioned. Some times I can feel my eyeball moving in and out of place. Mestinon usually helps. The heat and bright sun make it all worse.
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#7 | ||
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Thank you for taking the time to reply. That's calmed me down loads! Having played diagnostic roulette before you start to doubt yourself and imagine all sorts of things.
Rach x
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Diagnosed with: Postural Orthostatic Tachycardia Syndrome,Post Prandial Hypotension, Orthostatic Intolerance, Arrythmia, unstable blood pressure, severe autonomic nervous system dysfunction ,Ehlers Danlos Syndrome Type 3,Gastroparesis,IBS,Hidradenitis supprativa And Myasthenia is still a possible diagnosis depending on which Dr I see. My blog address is . . Lord, grant me the serenity to acceptThe things I cannot change,The courage to change The things I can, And the wisdom to hideThe bodies of Doctors I shot When they said,"You're perfectly healthy, It's All In Your Head." |
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#8 | ||
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"Thanks for this!" says: | rach73 (07-08-2013) |
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