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...
Finally, almost a year after the tests were ordered and as many possible screwups you could imagine, I found out today I am negative for MuSK and LEMS antibodies. The tests were done at Athena Labs and my neurologists office had to call them to ask for the results.
I have a followup appt with the out-of-town neuro in February. In the meantime, I'll finish up with oxygen monitoring, a night with a CPAP/BiPap in the sleep clinic, arterial blood gases and a visit to my trusty naturopath, who has literally kept me alive the past few years.
So I hope the followup isn't a "Goodbye, you are done here" type of visit. We had briefly discussed a muscle biopsy in November of 2013 so that might be back on the table, and possibly more Mestinon since 60mgx3 doesn't seem to be enough these days.
I'm kind of glad to not have MuSK or LEMS but am tired of being the Seronegative Queen!
Flutebell
I have a followup appt with the out-of-town neuro in February. In the meantime, I'll finish up with oxygen monitoring, a night with a CPAP/BiPap in the sleep clinic, arterial blood gases and a visit to my trusty naturopath, who has literally kept me alive the past few years.
So I hope the followup isn't a "Goodbye, you are done here" type of visit. We had briefly discussed a muscle biopsy in November of 2013 so that might be back on the table, and possibly more Mestinon since 60mgx3 doesn't seem to be enough these days.
I'm kind of glad to not have MuSK or LEMS but am tired of being the Seronegative Queen!
Flutebell
Long wait for really no answer. I'm sorry.
The biopsy sounds like a good plan next.
Does anyone know if they test yet for the newest one : LRP4?
Perhaps ask about that maybe?
Connie
Do they suggest you don't have MG because of the sero negative status? I am negative but still have the diagnosis. I'm negative for musk and lems too. Good luck with the new neuro!
Life is never simple in my body so I probably have two autoimmune muscle related diseases at the same time! At least a muscle biopsy would rule out nasty mitochondria problems. I'm glad for now that Mestinon has kept me working, driving and gardening, with appropriate rest periods added in. So I'm sure I have some kind of neuromuscular transmission problem. After a year for the MuSK and LEMS results (and $1400 US paid by our provincial health plan) I'm very unlikely to get LRP4 or titin antibody testing done. Oh, well....
Flutebell
We've all been where you are now and some of us still are. We know exactly what you are going through and we are here for you.
Hugs!
Angie
Daughter got the muscle biopsy but I am going to just have a repeat muscle testing. My test for autonomic autoimmune ganglionopathy is not back from Texas yet. It was done due to my autonomic dysfunction. This sister disease causes decreased acetylcholine but at the ganglion. Some people can have both a neuro junction and a ganglion problem.
If pyridostigmine works for you it is paramount you have some one to support you with Rx's and treatment. Not every doctor is able to support a seronegative patient or is competent to do so. WIll be hoping you get the support you need! Hugs, Marie
Depending on how the followup visit goes, I'll ask for a referral to another large centre that might see more seronegatives. I am definitely getting a little worse over the past year and the Mestinon works, but not for as long. The night breathing issues need to be addressed as well. If she won't consider more treatment I may have to find neuro #3.
Flutebell