[maryec]

Hi all, I have had myasthenia gravis for 11 years now, gone through the Thymectomy, IVIG, I take 120 mg mestinon 5 times a day, & timespan 180 mg at bedtime, with prednisone daily.
Neuropathy & myopathy just showed up on my ncv & emg, along with my jitter from the MG. I have myotonia in my hands & legs & feet. The reason for the check was for weakness, foot drop, legs giving out. The doc. have known all along I had some overlap disease. wonder what they will come up with now?

[AnnieB3]

Hi, Maryec (is it just Mary?). Welcome. I know that some people can have a steroid-induced myopathy. I hope what they find is not too bad. It's bad enough just having MG. Have they checked for other things like thyroid disease, B12 deficiency, etc.? I really hope they can figure it out for you so that you don't have the increased weakness.

Annie

[maryec]

Originally Posted by AnnieB3

Hi, Maryec (is it just Mary?). Welcome. I know that some people can have a steroid-induced myopathy. I hope what they find is not too bad. It's bad enough just having MG. Have they checked for other things like thyroid disease, B12 deficiency, etc.? I really hope they can figure it out for you so that you don't have the increased weakness.

Annie

Yeah, I have had blood work repeatedly, since I got hit with the MG, In the past I have had MRI of brain, I have left tempral lobe lesions , more consistant with Lupus, skin biopsy shows lupus bands on my arms only, so not diagnostic unless in a non sun area.
I get by with 10 mg a day, that is the lowest I can go, or my eyes get very painful & jittery, & hard to hold my lids openI will just have to wait & see, I go to see the neurologist May6th, the doctor did the test himself, & told me waht he saw, he needs to compare my last years one, & go over other tests & symptoms. Uhggggg !!!!
Thank you for speaking to me about this mess !

[ras1256]

Welcome!
I feel for you Mary. I'm currently going through testing again for an overlapping. They are looking at Lupus, MS....blah blah blah! I have had MG for 14 years for sure, probably longer, but didn't get the "firm" dx until 2004, and even it's being re-examined! I hope they find your overlap and can get good treatment for you on that.

Maybe if they figure it out you'll find that they can get you better than when they were just treating for MG! We can all hope that for you. Annie is awesome and extremely knowlegable, as well as many others on this forum. Keep us posted on the progress they make for you.

Lots of Hugs, you poor baby - it's SOOOO frustrating I know!

[erinhermes]

Hey hon! Sorry to hear you are going through all of this junk right now!

I know this sounds dumb, but what is - myopathy? I know my pred causes me to get really, really jittery...........at least I think it is the pred........

Why on earth do they need to recheck your dx? I just don't understand!

Take a deep breath and try and relax for now - stress will only make you feel worse.............easier said than done........

Are you going to see a specialist? When are you scheduled for more testing? What type of testing do they want to do?

Can't wait to hear from you!

Big hugs!
Erin

Originally Posted by maryec

Hi all, I have had myasthenia gravis for 11 years now, gone through the Thymectomy, IVIG, I take 120 mg mestinon 5 times a day, & timespan 180 mg at bedtime, with prednisone daily.
Neuropathy & myopathy just showed up on my ncv & emg, along with my jitter from the MG. I have myotonia in my hands & legs & feet. The reason for the check was for weakness, foot drop, legs giving out. The doc. have known all along I had some overlap disease. wonder what they will come up with now?

[Maxwell'sMom]

Erin, it's a muscle, or muscles that are damaged, usually happens when muscle wasting is occuring, if my memory serve me well.

Welcom Mary, I sure hope that they'll find the cause, and it will be something that is fixable. 11 years, Wow. So you could be one of our very own experts . right here.
Looking forward to hearing your life experiences with this monster.
again, welcome
Love Lizzie

[maryec]

Originally Posted by ras1256

Welcome!
I feel for you Mary. I'm currently going through testing again for an overlapping. They are looking at Lupus, MS....blah blah blah! I have had MG for 14 years for sure, probably longer, but didn't get the "firm" dx until 2004, and even it's being re-examined! I hope they find your overlap and can get good treatment for you on that.

Maybe if they figure it out you'll find that they can get you better than when they were just treating for MG! We can all hope that for you. Annie is awesome and extremely knowlegable, as well as many others on this forum. Keep us posted on the progress they make for you.

Lots of Hugs, you poor baby - it's SOOOO frustrating I know!

Thank you for the welcome !
It is upsetting I have severe case of MG as it is. So NM Junction is damaged, now they tell me nerve & muscle damage also . I guess we will have to wait & see what name they come up with now for the overlap. I go May 6th.
So glad I have found you guys !

[erinhermes]

I am so glad you found this site! It is a true life saver! THere are so many wonderful people here - all of which are willing to lend a sympathetic ear and great advice!

Good luck with your appt! I hope all goes well!

Big hugs!
Erin

Originally Posted by maryec

Thank you for the welcome !
It is upsetting I have severe case of MG as it is. So NM Junction is damaged, now they tell me nerve & muscle damage also . I guess we will have to wait & see what name they come up with now for the overlap. I go May 6th.
So glad I have found you guys !

[maryec]

Originally Posted by erinhermes

Hey hon! Sorry to hear you are going through all of this junk right now!

I know this sounds dumb, but what is - myopathy? I know my pred causes me to get really, really jittery...........at least I think it is the pred........

Why on earth do they need to recheck your dx? I just don't understand!

Take a deep breath and try and relax for now - stress will only make you feel worse.............easier said than done........

Are you going to see a specialist? When are you scheduled for more testing? What type of testing do they want to do?

Can't wait to hear from you!

Big hugs!
Erin

Maxwells mom is right ! & thank you both for welcoming me ! Neuropathy is damage to the nerve, MG -Neuromuscular junction, myopathy is muscle . I am sure I am in for more testing now. I am definately asking for a biopsy, after going through my MG diagnosis, I am not screwing around with maybe this or that with these doctors, what a nightmare !

[redtail]

Hi Mary and welcome,

Hope you get some answers soon.
take care
Kate