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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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11-18-2016, 03:36 PM | #1 | ||
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Living in the uk we have the NHS for all medical care waiting lists are very long to have anything sorted out, decent neurologists are few and far between. I am very surprised to read about all the hassle that you all have trying to get medical care and insurance companies to agree for testing etc in USA , we presume here in the uk that your healthcare system is so much better than ours and it seems that most of us have similar problems whichever country we live in. My daughter had a positive blood test for mg in January 2016 and has finally got an appointment to see my neurologist on December 14th!! At last she may finally get something done before her exams next year. She has severe fatigue, droopy eye, double vision, she is always Ill , easily breaks bones the list is endless!! more recently she is developing slurry speech, croaky voice, losing her voice, she is getting mixed up with her words and saying the opposite word to what she ment to say, making simple spelling mistakes missing words out when writing, unable to concentrate etc. I also have mg and get problems with the same thing does anyone else have problems mixing words up, saying the wrong word etc? (Aphasia) It's never wrote down as a symptom of mg.
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11-18-2016, 04:51 PM | #2 | |||
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Our problem here is not finding a DR but finding one that knows anything about MG.
Mike |
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11-18-2016, 04:54 PM | #3 | |||
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I find it interesting that your daughter also has MG. My mother had MG and my sister and I have it. But so many Drs will tell you it's not inherited.
Mike |
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11-18-2016, 09:22 PM | #4 | ||
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I'm Canadian and have to admit that in the province Ontario our OHIP insurance system is very good, when I was first diagnosed back in 2008 it didn't take long to get a prognosis and right away I was referred to the proper Specialist and started to get treated and followed up on a regular base and no worries of not being covered or having to pay for any medical attention of any kind except for prescribed medication and again mostly covered by our employers insurance company benefits...
I've noticed that we have a lot of foreign patients coming here to Canada to get treated, my Hospital is now treating MG with STEM CELL treatment with very good results! Have a look at the link; Stem cell transplant gives Ottawa area woman new lease on life | CTV Ottawa News I have been given the green light for the procedure, I'm seriously thinking about it! Just don't give up and keep fighting, as you can see they've come a long way in the last few years... |
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11-18-2016, 11:46 PM | #5 | |||
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I have one thing to say to Dr Atkins THANK YOU!!!!
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11-19-2016, 03:47 AM | #6 | ||
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My auntie also has it which is why I requested the tests for it when I was having all my eye problems that I had had for 5 years they only agreed to give me a blood test to rule it out ! I had had trouble swallowing all my life I just thought everyone had the same thing I then started with slurry speech and mixing my words up croaky voice when talking also something I had had for years. My daughter hasn't been healthy or fit from been a toddler but the Drs were never interested on the many visits to the Drs telling them something was wrong. When I was diagnosed I decided to push for the same tests for her and her positive achr blood test was higher than mine, now almost a year down the line she is struggling more and more with her symptoms and slowly developing other symptoms hopefully she will be allowed to go on mestinon, it has certainly helped me .
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"Thanks for this!" says: | pingpongman (11-19-2016) |
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