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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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05-27-2013, 05:18 AM | #1 | ||
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Junior Member
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hey everyone,
I wish I could say I am doing well but unfortunately that is not the case. Back in February I decided to take a more holistic/ natural approach to managing my MG ( juicing, cutting out animal products, exercising) and was doing phenomenal for a while. I actually was able to come off all medications (prednisone/mest) and function just fine. I was even able to run! The last few days though, I've lost all progress. The heat, humidity, and pollen are doing a number on me. It's starting to get to the point again where I'm falling for no reason and unable to go up and down stairs. I know I need to go back to my neuro, it's just so disheartening after all the progress I was making, avoided getting port, plasmapheresis, and surgery.. I really thought I could have a "normal" summer, I even bought a bicycle to ride around the city! I tried venting my feelings to family but I know they dont quite understand like you guys do. Any who.. Hope you all are in better health & spirits on this Memorial day, and thank you to all who have served! |
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05-27-2013, 09:20 AM | #2 | |||
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Lin, so sorry for your setback. I would suggest contacting your neuro as soon as possible for medication instructions. I know a change in a healthy diet has helped me but I still need to rely on mestinon. I am awaiting IVIG.
I live in PA and the heat in the last 2 weeks has done a number on me. I can tell it has affected our MGers as well with a large number of new member in just the last few weeks. I am severely affected by the heat as soon as it reaches 70 degrees so I can sympathize with your frustration with the long summer ahead. Here are a few things I have learned that help me with the heat. I have already have had my air conditioning on for weeks, sometimes just removing the humidity from the house and keeping it out helps. I set it to 75 during the day and 72 at night. I find I can tolerate higher temperatures during the day. I set it to 72 an hour before bed and I find I can get cooled down to take the stairs easier. If I can get a good nights sleep from being cool I can function much better the next day. I also have ceiling fans continuously going in the room I am in to feel cooler. Drink lots of cold ice drinks, it definitlely helps. Put ice packs on the biggest affected muscles. For me that is the thigh muscles, I have the same problem with tripping and falling. No warm showers, I use luke warm or cold water. No folding hot laundry, wait until it is cool. Have someone else wash the dishes. Even the hot water in the kitchen sink can do me in or standing over the hot stove. Next is the hardest thing to do. Accept a new lower level of expectation. You are going to be able to do less in the heat. If you push yourself, you will just make things worse. My general rule is what ever amount of physical activity I do, I have an equal amount of rest. If I fold laundry for 20 minutes, then I sit in the recliner for 20 minutes. If I have a day when I go grocery shopping, the next day, I plan a day of rest. I hope this helps, take it easy this week, it is suppose to get close to 90 degrees by Thursday. kathie |
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05-29-2013, 12:37 PM | #3 | ||
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It is vary hard when you was doing so great, feeling so good to suddenly feel any of the symptoms. I felt wonderful after the 10 plasma's I had. I had my last one on the 8th of March but on and off you can feel your symptoms and that just scares me as I imagine it does anyone with MG when you feel "normal" to suddenly go back to...'not again' I know i am just rambling on but let me tell ya all you can do is ... Try your best, and don't over do anything ... As kathie said above, Rest...And def see your neuro.
We all feel your pain and emotional upset especially when your doing so great for so long then suddenly you feel MG... Ice is wonderful by the way, also air conditioning is a must as Kathie said. Heat just sucks the life out of us. Godbless you Lisa |
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"Thanks for this!" says: | cait24 (05-29-2013) |
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