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...

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arniebb2 04/16/2013

Yesterday I could hardly move. I had almost no strength in my limbs. I was well rested, had taken my usual meds at the appropriate time, and was not particularly stressed. After 3.5 months with myasthenia I have been getting used to what I can and cannot do, but this scared me. Today I am fine (given the limits of MG), and I wonder if it is common to have a day like this out of the blue?

Thanks to all who responded to this newbie's first post. I have been reading lots of previous posts and am so grateful for the information.

Barbel 04/16/2013

Yes, for me it is normal to have a day "out of the blue" where I can't function as well as normal. I dont feel guilty anymore if I have to spend the day, or the evening on the sofa. Rest is key with MG. I have noticed lately that the quick dips/highs in the weather really flare my MG. Also, I can not have refined sugar or it makes me ill. When I over do it, I will REALLY be down for a day or two. Sometimes, I can't figure out what made me have that bad day. There are lots of ups and downs with MG. You will learn what effects you. Being flexible and not stressing has helped me. I was thinking today that I have always been easy going, but now I am even more so. I don't let things bother me that really aren't worth the stress. Also, I can't do everything I used to be able to do. Before I knew that I had MG - I worried about WHY I couldn't do things as normal. Now I know that I can't help it. I do the best I can. Best of Luck to you! Welcome to the group!

deleted_user 04/16/2013

Welcome to DS's MG site. I know you will get alots of information here that will aide in your recovery. MG is unpredictable and that can be frustrating. What worsens my MG is when after a few good days I try to push the envelope just a little bit more and pay for it for the next few days. It is hard but rest is important. Good luck. I have been at this for 15 month.
Mary

Koev 04/16/2013

Hi Arnie,
Yes, this is sooo typical for me. I will just think I've figured this MG thing out---what to avoid, how to take my meds, etc. and BOOM... Whopper of a bad day or weekend.

And believe me, I have a pretty long list of things to avoid... God-willing you are not a perfectionistic, trying-to-overachieve, way-too-overbooked working mom who has to completely rework lifestyle/plans/thinking....

And, yes, it does feel scary and out of control. I am so thankful for this blog site. You guys understand. I spend a lot of time praying and considering some pretty important philosophical issues while I'm puffing away. Nothing like dyspnea (shortness of breath) to make you realize life is precious and your kids still might need you...

I would think after a few years this would get easier... Most of the literature says MG does seem to stabilize in most people after 3 years or so (for me it's already been 2 years). But before that we do need to really be in contact with our physicians if the exacerbations aren't settling down in a reasonable timeframe (should be discussed in previous office visit what that timeframe is...)

Hope you're feeling a lot better soon!

arniebb2 04/17/2013

Thank you Barbel, Mary and Koev for sharing and for your compassion. After reading so many older posts I noted that salt and sugar seemed to cause problems for many, and I've been considering that in all that I eat. I also thought I had worked out a routine where I would try to get 'stuff' done outside the home one day and rest at home the next...have bath, wash hair, do meal preps but not much else. And yes, I have always been an over-achieving perfectionist lol.

I think I need to consider diet more, as well as my schedule. Also , I think I should see my neurologist or a member of his team (he runs an MG clinic at a hospital not too far away), and go over my concerns...my next follow-up appointment is not 'till the end of August...I don't want to wait that long.

Again, thanks so much for responding and helping, when you are all suffering too. Its such a hard disease for our loved ones to understand. Hoping we all have a good day today!!

Bamboolilly 04/17/2013

Ditto all above. I sure hope stabilization comes soon for all!
Be well,

deleted_user 04/18/2013

not only do I get days like that out of the blue but my body also likes to mix things up by varying which muscle system will get really weak that day. sometimes it's my legs while other times it's my breathing. nothing like MG to keep you on your toes (not literally tho- when it gets bad I totally cannot walk on tiptoe!)

revelationman1911 04/19/2013

for me there isnt a day that goes by that mg is present....take yesterday for example...i got home from work and was so tired so i slept until this morning and went to work, 15hrs straight,,,when i get fatigued im down for awhile....at least a day or two .....sometimes i can feel the MG monster coming on and then maybe the next time there is no warning,,,,BAM,,,,it hits out of the blue,and hard too. a little word of caution to you, it is very common when you feel good one day that you will over do it and will PAY for it the next day or two...rest helps me so much...i have learned that what i thought was important before MG is no longer that important, especially if it is a physical activity,,,,exercise is a bad word in my vocabulary, i cant exercise or i will pay big time,,,not worth it for me. some people can though,,,i wish i could. you will learn so much from everyone on this site,,,wonderful people and so giving.....welcome and blessings to you

terry

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