Almost diagnosed with MG finally - Neuromuscular Diseases Message Board

shell65 · 05-20-2008, 09:12 AM

Hi everyone, I have been battleing with a diagnosis for 9 months now. It started with my eyes blinking nonstop then twitching and for the last 6 months I have no control of my eyes they open and close when they want. I had been diagnosed with blepharospasms with eyelid apraxia and went through all the treatments and they didn't work. I have had 3 spinal taps and 3 mri's and several other tests, Oh I have also been diagnosed with MS, but it is totally unrelated to these other symptoms. Im weak ALL the time but can't sleep because for the last month I can't lay down without not being able to breath properly and now Im having a heck of a time swallowing I have spasms in my neck and throat now as well. This has progressivley been getting worse every week and now I spend a lot of time in emerg, they won't listen to me and want to always treat the MS which it has been proven is unrelated to this other condition. I did research on my own, and asked my neuro about Myasthenia Gravis and she finally agreed that I do have all the symptoms and has set up an appointment with another specialis (the 4th) and has set a swallow test as well. What is the prognosis for MG Can someone please help me. Are these all symptoms of mg and can you live a normal life with it? Im heading back to the hospital this afternoon but will check posts later tonight or tomorrow...thank you so much .
Shell65

Brocallie · 05-20-2008, 02:04 PM

Those symptoms don't sound like MG, other than the breathing and possibly the swallowing issue. MG does not cause spasms or uncontrollable movements--simply weakness. In fact, most patients with eye involvement in MG have trouble opening the eyes, and have droopy lids, or ptosis. I supposed it's possible that you have MG along with something else that is causing the spasms, but that would make you a very rare bird indeed with MS, MG and another neuromuscular disease.

Prognosis varies with MG from a minor annoyance to severe disability. No way to predict what any individual's outcome may be.

Keep us posted.

shell65 · 05-20-2008, 06:09 PM

Quote:

Originally Posted by Brocallie

Those symptoms don't sound like MG, other than the breathing and possibly the swallowing issue. MG does not cause spasms or uncontrollable movements--simply weakness. In fact, most patients with eye involvement in MG have trouble opening the eyes, and have droopy lids, or ptosis. I supposed it's possible that you have MG along with something else that is causing the spasms, but that would make you a very rare bird indeed with MS, MG and another neuromuscular disease.

Prognosis varies with MG from a minor annoyance to severe disability. No way to predict what any individual's outcome may be.

Keep us posted.

Hi Brocallie,
Thank you for your reply. I should not have said spasms as my neuro has said Blepharospasms but there is actually NO spasms around my eyes. My eyes are weak and open only when they want to but not usually without help from my fingers to get them open and my right is started to droop about 2 months ago. They have told me that I definatley have MS, as I have the white lesions and my spinal fluid also confirmed that, however I do not have clinical symptoms of MS so they have not treated me for that as of yet. Because of my eyes I hace not worked or drove a vehicle since the end of September, talk about life altering! I have not been confirmed MG but they are definatley checking into it as I have not responded to any of teh treatments for Blepharospasm/eyelid apraxia, which is extremley unusual! I really just want answers and treatments, as this swallowing thing has become difficult to accept it seems to be getting worse weekly. Thanks again for your reply, I appreciate it

Brocallie · 05-21-2008, 02:10 PM

Oh yeah, that does sound more like it.

I'm so sorry. MG is a very tough disease. I have a friend who has both MG and MS as well. Like you, the MG is the more immediate problem but please don't ignore the MS just because you don't notice it all the time.

If you don't test positive for the first antibody test the doctor does, please ask for the MuSK antibody test. I have that type of MG and it does tend to affect muscles from the neck up more. It also, unfortunately, is the most difficult type to treat. I've dealt with it almost 10 years (Sept) and have had lots of ups and downs.

Keep us posted.