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Old 12-03-2020, 12:02 PM
MAT52 MAT52 is offline
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Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
MAT52 MAT52 is offline
Member
 
Join Date: Feb 2015
Location: Scotland, UK
Posts: 529
8 yr Member
Default Awakening Ptosis and Myasthena investigations

Hi there. I am new to this MG community but used to be a regular on the peripheral neuropathy community here. But somehow NT fell off my radar. So I’m back now with questions about possible MG

My conditions are on my signature so won’t list but mostly are autoimmune.

I’m still trying to digest a new diagnosis of systemic scleroderma. And my neurologist has decided to test me for Myasthena Gravis due to me describing my eyes locking during deep sleep and needing to be opened manually wheh I wake.

This seems to be more of a problem when I’m hot and having night sweats than when it’s cold by day. One eye and side of face is droopy although this is barely perceptible unless I’m really extra tired.

In addition to this I have a wobbly, unstable neck and for years have suffered from weak arms. However far from improving with rest they actually become weaker with rest and I’m better when I keep moving until I can’t. Also I don’t have double vision apart from when I’ve put eye drops in or am on certain prescribed medications.

My voice does sometimes go deep and gravelly when I’m tired, slurred even occasionally - but less so now I’m on regular immunesuppressant medication and a proton pump inhibitor so I’m guessing it could just be part of my existing autoimmune disease overlap.

Anyway my neurologist asked for photos of eyes refusing to open during the night so I sent thee and this prompted him to phone and ask me to come into hospital and get antibody tested for MG. He said he would phone me with the results in 6-8 weeks and I’ve got a date for the third week of December for this phone call now. I’m fairly sure I don’t have MG but just wondered if any of these symptoms ring bells?

I’m in the Uk.
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Sjögren’s, Hashimoto’s and Systemic Sclerosis with Raynaud’s, Erythromelagia and small fibre polyneuropathy, GI problems top to tail, degenerative disc disease and possible additional autoimmune diseases

Last edited by MAT52; 12-03-2020 at 12:27 PM.
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