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Awaiting possible diagnosis

Hi, am new to these boards. I’m 52 and living in the UK. I mentioned an intermittently droopy right eyelid to my optometrist about 4 months ago who referred me via my GP to a neurology consultant who I saw at the end of July. I’m awaiting bloods and a chest MRI.

Meanwhile in the last two or so weeks I’ve developed pains in my hips, knees and ankles when going up and down stairs and also have a weird pressure sensation as if I have a weight on my chest when I lie down, which makes me very aware of my breathing. Also, early evening fatigue which hits me like a train, and a bit wobbly on my feet and I’m losing my balance a bit when moving about.

Obviously I have no firm diagnosis (although the consultant spoke as if he thought it would be confirmed) but I wondered if any of these things going on, in others’ experience, are linked to a shift towards generalised MG, or whether I’m just symptom-spotting by being on heightened alert?!

Any feedback most welcome, thanks.

  1. Hi Agnes. I've been having issues with my eyes for awhile. At first, I thought it was because I hadn't updated my eye glasses in awhile (didn't have insurance) and that my eyes were just getting tired. Also noticed that when styling my hair, my arm would get so heavy, like I just couldn't hold it up any more. Thought, I'm just getting old. So I stopped styling my hair. I finally took some selfies when my eyes were messing up, because I had gotten new glasses, had gotten a filter for my computer screen, but they were still doing it. And I was shocked to see how much my right eye was drooping. I tried to open my eyes wide, and that was when I noticed my right wasn't looking straight, but inward toward my nose, when my left eye was looking at the camera. Since I'd had a stroke a couple of years ago, made an appointment with my doctor and he said he is thinking MG and sent me to an ophthalmologist. The opththal doc ordered labs, which came back negative, but he still suspects MG since cold washcloths help with the droopiness. And opththal doc wants to send me to an ocular neurologist, which isn't covered by my insurance. I've also been having a problem where my voice gets week when I'm talking and I have to push the words out at the end. Since the stroke effected the speech center of my brain, I had been putting it off to that. But after reading about MG, I decided I'm going to just schedule an appointment with a neurologist that specializes in MG. I don't know if it is MG. It may be just be related to the stroke two years ago, but I don't know why that effect my eyes. My eye is fine in the morning - but if I didn't get a good night's sleep, it's starts drooping by 10 AM (I work on the computer for my job). If I did get enough sleep, it'll be later in the day. And there are times when it doesn't do it at all. It started acting up again this past week. Which got me thinking about it and that's when I decided this next week to schedule an appointment with a neuro. I don't have to have a referral to schedule an appt. with a specialist, thankfully. To top it all off, I broke a rib last week. I don't know what to expect at the neuro doc, since the labs came back okay though. A little nervous but maybe we can at least rule out MG.

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      1. I have also had a funny feeling in my chest during exercise, which feels like the inside of my chest is trying to stretch ,it doesnt hurt but i have to stop what im doing until it stops Cardiologist said everything is good with my heart. I have noticed my balance seems to be getting worse

        1. I'm going through the same issue, I have had three different Doctors say I have MG but all tests so far are negative, had multiple mri's CT scans ,lumbar puncture and multiple blood tests. Neurologist has started me on MG medication Mestinon and pregnazon symptoms seem to be better with Mestinon I stopped the pregnazon after one month to see if it made a difference really couldn't tell I stopped taking it. If i skip the Mestinon i can tell a differance, neck hurts, Eyes feel reaI heavy and tired and blink alot arms feel as if I have lifted weights all day and are dead tired ,energy level just not there anymore I still go to the gym everyday during the week and try to do my best , I have been a gym rat my whole life but really fallen off last couple of years. Hope the Dr's figure it out soon

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