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| Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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02-18-2014, 04:23 AM
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You mentioned the possibility of MS - did they do an MRI of your head AND your neck? The lumbar puncture can be very useful for lots of neuromuscular issues - MS, CIDP/GBS, paraneoplastic causes.. lyme, and more.. I think they took 22cc's of spinal fluid from me when I was in the hospital, and they didnt' have enough to run all the tests, since there are so many they can run! I have been sick for almost 3 years now and they still think of tests to add that we haven't run - its kind of crazy!
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02-18-2014, 08:35 AM
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They said I was negative for lymes and lupus and all of that. I am having memory issues too and eye issues so my MD and eye doctor thinks that it is MS. The neuro at the hospital thought mg but I tried to tell him that I was having a muscle spasm but I could not talk well. The MRI of the brain was negative and that is all they have done but my eye doctor said that she has seen MS not show up on MRI for awhile. So I want them to do the lumbar and a MRI of my neck.
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02-19-2014, 03:54 AM
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yes, a negative MRI doesn't mean no MS - the full work up includes the LP and c spine MRI- and even then some peoples doesn't show up just yet.. It's frustrating, scary and hard to be a mystery.. I understand that completely!!!! I hope they continue to evaluate and search for you!
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02-19-2014, 08:52 AM
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Yes it is hard when it doesn't show up at first so you do not know if you will get treatment. I'm just scared whatever it is will get worse before it shows what it is. I know its not mg and pretty sure it is MS.
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02-20-2014, 01:47 AM
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well, if it is MS, there are so many great treatments out there at least! There has been a lot of research in that area - though more is obviously needed, and better treatments and a cure .. but I have met many people who are living amazing lives without any disability after having MS for 20 years!
HOpefully you will find answers soon, or they will at least try some treatments! Prayers going out to you - limbo land is soooo stressful (I've been in it for 3 years)!!
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| "Thanks for this!" says: | sham0968 (02-28-2014) |
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