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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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10-25-2009, 04:18 PM | #41 | |||
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The heat doesn't bother me either. I wondered in the beginning of MG if I was just denying it since I love the hot summers and the oppurtunity to have the whole desert to myself (rarely do people go out on the hottest days), but I have found that really the heat does not bother me or make my MG worse. I do have to drink plenty water and be sure not to get dehydrated-I am much more sensitive to lack of water with MG than I was before MG.
The cold is terrible for me and I have to minimize my time in the cold (less than about 75 degrees is cold). I love temperatures between 80 and 105 degrees. Why is that? I don't know but it has always been this way for me. Maybe the heat doesn't effect my MG because I am already adapted to it (a body definitely works differently when it is adapted to heat---blood pressure, heart rate, etc). I am so glad to hear that I am not the only one!!
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10-25-2009, 04:54 PM | #42 | |||
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hehehehehe, Nicky, I would miss singing IF I ever had a voice to sing! I did "try" to sing a congregational hymn at church once and almost passed out after the first verse. I had to remain sitting for the rest of the service. Everyone kept on staring at me -- which I HATE -- I don't like attention AT ALL!!
Desert Flower -- we must be SISTERS!! 75° is the minimum temp I like, too! About 90° is my fav -- but, it is humid in Tennessee, so it probably feels more like 95°-100°. I drink constantly -- there is a glass of water or tea (mostly decaf) nearby at all times. I probably chug more than 100 oz a day. When I start feeling weak, I drink -- in a few minutes, I am better. I even take a glass or bottle with me in the car. When I had my ONE and ONLY IVIG, they told me that I needed to drink. I took a 2-liter bottle full of my weak tea/lemonade mixture -- and drank the WHOLE thing during my 5 hour session. The infusion nurse said that she had NEVER seen anyone drink that much -- but, I STILL got the headache -- aseptic meningitis. Just unlucky, I guess. |
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"Thanks for this!" says: | DesertFlower (10-25-2009) |
10-25-2009, 05:17 PM | #43 | |||
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How exciting to find someone that likes warm temperatures! I did not drink a lot of water before MG and it didn't seem to effect me. With MG I have found that I have to have lots of water just to function and also to avoid the side effects of mestinon. Water and mestinon makes it so I can function with MG. The few times I don't drink plenty water I get weak and by the time I feel this weakness drinking water won't help (although I still drink) - I go to bed early on those days. I have not had IVIG or any medication other than mestinon. Nice to meet you!
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10-25-2009, 09:03 PM | #44 | |||
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I'm the opposite, I love winter here(well here in Western Australia it doesn't snow or get below about 14cmax (39F) on average, although the mornings can get below -5C)
Summer wipes me out especially days over 33C. I think I need to fly North to escape our summers!
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11-09-2009, 12:45 AM | #45 | ||
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Hi Redtail! I am in SA and we have a whole week of 38C temps ( that is 100F). And surprise surprise but the symptoms I thought had gone way - are all coming back again from last summer.
Good topic. If my MG is mild could I be having remissions now on only 6mg Prednisolone ? And if my symptoms started when I was 10 but then disappeared and I forgot that MG had been talked about ..only to have them back again now ...could that have been a remission ? I guess I was not really well all those years, but improved from when the symptoms first started. I was able to work but fatigued a lot. I just thought that was me. Now its all repeating itself again. Are some remissions longer lasting than others ? xanadu |
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