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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-24-2012, 07:37 AM | #21 | ||
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Alice
Thanks for the (as always) thoughtful response. I realized although I like my neuro, truth is only thing he actually told me was he said I think you have MG beyond that anything I know about it is what I read which is quite amazing to me. Also another thing I noted about neuro in general is they do tests, exams that suggest to me that unless I am literally incapacitated at time of the exam, ar sort of useless...ie..sure I can walk, touch my nose and puff my cheeks but that doesn't mean I am ok. Perhaps something that actually compares your performance to your own baseline would be more helpful? Steph |
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09-24-2012, 08:02 AM | #22 | ||
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My neurologist tests me (for example) by having me push on his arm, and my strength always seems normal. But the neurologist who finally diagnosed me (I had to travel) used the same tests, but he kept me pushing much longer. At that point in my illness, I wasn't noticing weakness in my arms, so I was surprised when the muscles gave out--in a way I had never experienced before. Now that's a neurologist who knows what he's doing! He said, "Hmm. That's pretty good. It's not normal, but it's pretty good." I was so glad to hear those words, because it was the first time a doctor had anything to go on besides my description of symptoms.
Abby |
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09-24-2012, 08:48 AM | #23 | ||
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Well certainly today I feel extremely normal! I hope this lasts and am not getting overexcited about nothing! Hard to believe a few weeks ago I was choking on my spit during SFEMG – But surely cold temperatures can not possibly give such dramatic improvements? It´s as if suddenly no´damage´ is present even after all these years. I doubt that I will ever return to my original pre-myasthenia activity level but if I can find an electric cooling jacket, take Mestinon when needed and stay away from antibiotics then I think I´m good! (I do know you can´t do that with other medications)
Hope you get the minimum spreading of MG and maximum effects from your medications, Steph By the way - I landed probably the one neuro on the planet who didn´t test me for fatigable weakness.....and I wondered why a neuro wouldn´t ask which were your weakest muscles when that is the whole point of your visit. |
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09-24-2012, 09:11 AM | #24 | |||
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The fact of the matter is that only around 600 people in the US are diagnosed with MG per year - it's not a common disease by any stretch of the imagination. The best neuros out there are the ones who are willing to LEARN about the disease and listen to their patients.
If you are lucky enough to live in/near a larger population center, chances are that at least one neuro in the area has had experience with more than one MG patient. And yes, it is hard for a doctor to know what our day-to-day lives are like when they only see us for 1 hour (or less) every 3-6 months. If we "appear" fine at the office visit, they will naturally assume that we are like that all the time. Some people have found that - as hard as it is on their body - it is sometimes best to not take their medication before their office visit. Some of them find that an appointment later in the day (when muscles are weaker) "helps" as well. Keeping a daily journal can help, too - it gives their doctor better insight into what's going on day-to-day. Most doctors want to help us as much as possible, but they can only work with the information they are given/what they see. They're only human, and they don't have the time to do the in-depth research that we can do - they have more patients than just us, and most of them have families who want to spend time with them after their work day is done. A good doctor is one who is willing to work WITH their patients, and who understands that we have access to information that might be helpful to our individual situation. |
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"Thanks for this!" says: | StephC (09-24-2012) |
09-24-2012, 09:44 AM | #25 | ||
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It wasn´t difficult to respect but SO MUCH hard work trying to work with the wrong doctor over 2 years when you already have debilitating symptoms. I personally am a much´harder´ patient now than what I was. Just like running a business - at the same time as still respecting all of my present doctors I expect no nonsense both in and outside of the doctor´s office. |
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09-25-2012, 02:45 AM | #26 | ||||
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There are about 25,000 MG patients in the US. According to Google, there are 13,5000 practicing neurologists in the US. So, on average every neurologists sees 2 MG patients over his/her life-time. This number is of course much higher for neuromuscular specialists. In fact, most leading MG experts see a few hundred patients. So, not having enough exposure to patients is not the reason for lack of understanding and knowledge, nor does it explain why there is such limited research. Quote:
I think most neurologists do know the medical literature on MG, with reasonable depth. It's just that there isn't much to know. The way MG was diagnosed and treated 20 years ago is very similar to the way it is diagnosed and treated now. Quote:
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09-25-2012, 05:55 PM | #27 | ||
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I am not very experienced with this, but I went apprx 4 years un treated , because of no diagxx and mine did not get worse. I stayed about the same, hard to chew, hard to speak sometimes, and droopy eyelids. Mestinon has completly taken that away, but I wasn't getting worse before.
Thanks all FredH |
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09-27-2012, 12:23 PM | #28 | |||
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09-27-2012, 12:53 PM | #29 | |||
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09-27-2012, 07:03 PM | #30 | |||
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80 mg of prednisone a day will most definitely cause some issues. It would kill me due to high blood pressure. How long it takes will probably depend on you.
I don't know that much about humans, but I had a 100 pound dog that took 40 mg of prednisone every other day for 7 years. He died eventually, but he was 14 old which is about as long as any 100 dog is going to live.
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"Thanks for this!" says: | StephC (09-27-2012) |
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