Hi. I have been under suspicion of MG for the past year based on resp weakness and intermittent mild weakness of my left eye. Tests negative. Recently I have noticed spells (when reading) of my right eye (not eyelid tho' I do get that too when tired) shaking/vibrating so the words on the page are shaking too. I can still read ok so seemingly not affecting vision. Does anyone know what this is and is it anything to worry about? I also have a lupus like CTD with some likely peripheral neuropathy in my arms & occasionally toes/feet/fingers. Hope to hear from you. c

hi, this could possibly be nastigmus?i could be wrong.. i also am under high suspicion of myasthenia gravis =( not fun. lupus does increase your risk of mg i have read also. what r your symptoms of peripheral neuropathy? kind regards

Thanks for your reply Stevee. I have googled nystagmus and its definitely a possibility. My Perioheral neuropathy is self diagnosed - EMG was clear - and involves tingling/burning then bruised sensation along the insider of my forearms. This is worse during a flare but never leaves my left upper arm. I sometimes get acute pain to light touch in a my fingers plus a feeling of warm water running over my feet etc. Several consultants in different specialities have suggested MG but my rheumatologist is resolute that the problems are due to the CTD. He rarely has good answers though for the bizarre symptoms my body seems to be throwing at me. I don't know what to think. In certain activities I can function well but others that involve my upper arms/chest muscles are hard to tolerate without payback. Obviously the PN could be to blame . . . How about you? Regards, Clare

Clare, An EMG is not the right test for a peripheral neuropathy. There are more specific tests for that! Go to the peripheral neuropathy forum here and they'll answer any questions for you!

Also, have you had your vitamin B12 checked? That's the most obvious cause of PN.

If you want your eyes assessed, go to see a neuro-ophthalmologist! Don't rely on one doctor to figure everything out. They see things from their own speciality and might not even have the depth of knowledge to understand MG or what else might be going on!!!

And what you are describing sounds as though it is fatigable (hard to tolerate without payback); meaning that it gets worse the more you do. That sounds like MG, not PN!

Did they do the MG MuSK antibody test, too? What about a Single Fiber EMG?

Do you have a good internist? They can check out some basic things for you, too.

Are you short of breath at all?

Sometimes it takes a few doctors to figure out exactly what's going on. And if you have MG, you need to know that! I hope you can get this all figured out soon.

Annie

Hi Annie

Thank you for your very informed reply. I'm feeling quite dispirited after my recent rheumatology appt where my Doc condensed a 20 min appt into a 6 line letter in which he patted himself on the back for having 'stabilised' my condition. In fact, several things are worse particularly my lung function which is markedly worse.

The more I read, the more I see that CNS lupus (I already have lupus/UCTD) can behave in similar ways to MG including ptosis, weakness, resp problems of all shapes & sizes etc so it's hard to know which way to direction to push my Doc.

I am amazed by the complacency of my resp Consultant who stated 'I am not unduly concerned by the results of your recent tests . . ' PIMax 18, PEMax 23, weak diaphragm, airways narrowed to 54% with no obvious cause . . I could go on. He attributes this to my vegetarianism . .

Thanks again Annie

Yeah, that's why Ellen DeGeneres is so out of breath after dancing (sarcasm)—being a vegan decreases lung function!

Being a vegan can cause a B12 deficiency, however.

If you're a Monty Python fan, this reminds me of the line, "I'm not dead, yet." Is that how these pulmonology "professionals" define "okay?" As close to death as possible is okay?

CNS lupus and MG are NOT similar. CNS lupus is not fatigable. That's why an MG expert needs to evaluate what's going on, not only a rheumatologist.

Instead of patting himself on the back, he needs to have a kick on his backside!!!

Do you know how they "defined" your breathing issues? Did they call it restrictive breathing or obstructive breathing? Or didn't they call it anything? Changes in MIP and MEP are neuromuscular specific. And if you are having fluctuating breathing and muscle weakness, that's indicative of MG (or LEMS or CMS).

This is not difficult at all, and I'm completely annoyed at the lack of scientific evaluation and any reasonable or serious concern about your health. I can imagine you feel even more incensed by this medical malpractice. Yeah, it's at that point.

What can we do to help?


Annie