Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hi everyone :) I just wondered what test I should push for as my neuro doesn't seem very pro-active and I don't see him offering to do them all!
As some of you know, I've been pursuing this for 9years but thankfully had a few years of mild symptoms so just got on with it as I didn't get very far with a diagnosis! I am now 3 months into a relapse and at the same stage (bloods clear, chest x-ray clear, MRI clear and a negative AChR test) this is as far as I got last time but this time my neuro has said this doesn't rule out MG (as we all know too well!) and he is clearly looking in that direction.
So....back to the question (sorry-I do ramble on!) would someone with a negative AChR test be more likely to test positive for the anti MuSK or an EMG (or SFEMG)??? The more I research the more I see there are patient groups who show negative on both who still have MG and I am scared I am to push for either one as I don't want another negative test and therefore no answers when all my symptoms point to MG! I would ideally like both but if he is resistant to that what would you advise as the best test? My main symptoms are one sided facial droop and eyelid droop, my legs and breathing become involved during bad days when I have tried to continue normal life but they seem to fluctuate the most and maybe more fatigueable than weak like my face at this stage.
Thanks again for your help :) x
As some of you know, I've been pursuing this for 9years but thankfully had a few years of mild symptoms so just got on with it as I didn't get very far with a diagnosis! I am now 3 months into a relapse and at the same stage (bloods clear, chest x-ray clear, MRI clear and a negative AChR test) this is as far as I got last time but this time my neuro has said this doesn't rule out MG (as we all know too well!) and he is clearly looking in that direction.
So....back to the question (sorry-I do ramble on!) would someone with a negative AChR test be more likely to test positive for the anti MuSK or an EMG (or SFEMG)??? The more I research the more I see there are patient groups who show negative on both who still have MG and I am scared I am to push for either one as I don't want another negative test and therefore no answers when all my symptoms point to MG! I would ideally like both but if he is resistant to that what would you advise as the best test? My main symptoms are one sided facial droop and eyelid droop, my legs and breathing become involved during bad days when I have tried to continue normal life but they seem to fluctuate the most and maybe more fatigueable than weak like my face at this stage.
Thanks again for your help :) x
Ice-pack --hold ice pack on eyes for 1-2 minutes and see if the eyelid droop is better
take mestinon (pyridostigmine) and see if it makes you better
or read about the diagnosis -- a decent site:
http://www.myasthenia.org.au/html/diagnosis.htm
Good Luck
If you do have one or both (and frequently EMG is done at the time of SFEMG) do prepare for the study. That information is also in the Links Group including what not to take beforehand (Mestinon and caffeine).
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