Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi all! I'm back after a long abscence and great to be amongst friends again on the site. I have spent 8 months of this year in hospital with my MG and complications. It's been a nightmare and I have really feared for my life at times. Anyway here I am with a strange question for you all. Have any of you ever had selective weaknening in one area whilst the rest of your MG stays stable. Let me give an example to make my question clearer say worsening swallowing when your other muscles are improving in strength? I was discharged 2 weeks ago and have been improving steadily and delighted for it. Then suddenly on wednesday I had a coughing episode, a blackout and ever since I have been extremely breatless on exertion. The rest of my generalised weakness is still improving and today I can walk a distance without assistance and my voice is back yet the breathlessness has worsened. I have just seen my pulmonologist because I have a history of pulmonary emboli and I thought perhaps I had had another. Even though my VC is improved he seems to think my breathlessness may be selective worsening of my MG??? Have any of you ever experienced that? We are going to do a VQ scan to check for emboli but I don't think he agrees with me and I must say I am having a hard time believing this is my MG again when everything else including my VC is improving. What do you guys think?
Strength and hugs to you all!
Ange
Strength and hugs to you all!
Ange
Are you tough - or what? What's in the water, over there in SA? One tough bunch of people, from all I can see.
Your experience is so far beyond me, I can't offer much, in the way of help.
But I sure can offer some encouragement - and good thoughts & prayers.
I hope you see - some more improvement in the coming days!
Best wishes - Ross
(Maine, USA)
I have to say, like my neuro said to me, it sounds like your bar is set so low that any improvement feels like a huge, new normal. When you are describing improving "generalized weakness" and walking "unassisted" it does not sound like you are without MG symptoms other than the breathing concerns. It just seems as if it is so much better than it has been that you are looking at what is the most prominent issue right now.
So, I would say, you are still having MG issues that are selective. And yes, I have experienced that. MG can affect any muscle in the body and it hits some harder than others and for no apparent reason. Sometimes, my swallow is hit the most or my legs or my breathing. But, I have to say, there are other lesser issues happening like fatigue that I may prefer to ignore when things seem generally better.
Health and happier days ahead to you, my friend!
debra
I would just be guessing, but I am with you. It sounds like you had an acute event, not like the gradual worsening ( or rapid worsening) of MG. I know you are or have been on about every treatment known to neurologists for this disease, and I would suspect a complication of your IV treatment. Hang in there. Other things are getting better, let's weather this set back!
b.
Ross I had to chuckle at your response! Hell I better rush out and purchase a water purifier at once! Seriously though,thanks for your support!I can honestly do with all the encouragement I can get. There have been times when I have been reluctant to share on the site because my story is not a very encouraging one for newcomers but it's a lonely space to be if you can't even share so thanks!
Hey Deb, so great to hear from you! Yip I know exactly what you mean when you talk about the bar being set low and a whole new normal. That is it exactly. I am still very symptomatic but in comparison to being BIPAP dependent and confined to bed it seems like heaven to just be able to take a short walk and be off the ventilator. Hell, I have a pressure sore on my nose from the constant pressure of the mask so it's a relief to have it off during the day at least.
Like you I do get selective weakness at times. It's usually my breathing that's the most critical and yes at times it is affected whilst my other muscles are more spared but this time the rest of my muscles are actually on the up and even my VC has improved (though it is still less than 1 litre) unyet I am much more breathless with effort than I was 4 days ago. Thats the confusing part. Surely if my MG was responsible my VC would be decreasing? I guess it could be indicative of fatiguing, it just seems different this time around although you may very well be right.
We have just embarked on another round of IV cyclophos and I go for my 2nd dose on thursday again so like you say bweeds I am really trying to focus on what improvement has taken place. It's so hard not to panic though when your breathing is affected isn't it. I will go for the scan an let you guys know the results.
Thanks again and hugs to you all from a warm South Africa!
Ange
I am fairly new here and your story doesn't scare me off. Everyone needs support especailly when you have gone through so much more than a lot of us. This site has helped me so much and as you know so well everyone is so wonderful here. I wish you well.
Cathy
I like the rest agree, never never feel bad about a post, we are here for you and everyone through the good and the bad, and to me the bad keeps the rest of us in check... I pray for continued improvement...Annette
It sounds like you are still fatiguing and of course you would be because you are doing more activity like walking without a ventilator. That is wonderful but it also takes a lot out of you.
My neuro says that strength comes back first and then stamina. Does that make sense in your case? You are getting stronger but are still having rapid fatigue in breathing right? If you were to try to walk farther, it would probably be more difficult of the demands on your whole system.
You are still improving and a lot. It takes time and a lot of it. Try to not overdo it. You are a true inspiration Ange :)
debra