Myasthenia Gravis Support Group

It's great to see so many new members signing in! Welcome!

New members, (and to people who haven't posted in a while, and have dropped in... ) WELCOME! We'll likely get busier as winter... nears.

Please don't apologize for asking questions--fire away! It can be difficult for many to try to sift through all the posts.

As well, if you haven't been diagnosed with MG, suspect that you may have it, or have no idea what you might have, WELCOME to you too! There are many good people on this forum with multi-diagnoses.

Expressing your thoughts/feelings here can be of such comfort to others, so please feel free to offer your support.

Hello all,

I was diagnosed with MG about two months ago. I think I've had probably had it for about four years now, but my Neuro doc thought it was an early onset of mild MS. Once I had a twelve hour episode of double vision in which I told him it felt like my right eye couldn't keep up with the left, he tested for the antibodies associated with MG...and here I am.

My question is, do any members have pain associated with their MS? I ask because my forearms, especially on the left side, have been aching for the last few weeks. My husband says its probably tendonitis...but it seems to me, it would go away with rest, and this doesn't. I'm just curious what you all think.

I am not currently on any meds, as my neuro doc said the side effects from the meds would be worse than the symptoms I was having. I didn't have any muscle pain at that time, though. I don't want to wait until I'm incapable of functioning before trying to get back in to see him. Just looking for anyone with similar experience.

welcome. yes i also have pain especially in my left upper arm. are you a nurse? i was a icu nurse. i was diagnosed in april 2009 and haven't work since june of that year. mine started out with double vision then the pain in my arm started later and i have a lot of muscle cramps especially if i over exert.

quilter

Hi no I dont have any muscle pain at all with my mg.And I dnt think you should wait eaither because u dnt want to go in to a crises it wont be good so u sshould ask your docter about meds.

Hello all,

Quilter, I am a nurse currently working in the OR. It's a scary thought to think this disease will progress to a point I can't work. Not sure how I'd respond to that. I don't notice the pain as much while I'm at work, but by the time I get home, I can't even steer the car with my left arm. Maybe it's a little mind over matter while I'm at work and see it as a necessity to stay functional or my patients will suffer. I don't know. I do appreciate your feedback.

T'smom, my next appt with my GP is in a month. He did his final thesis in medschool on MG. How weird is that? Anyway, I was going to ask him some questions about it as well and get his insight on if he thinks I need to touch base with the neurologist. I just don't want the docs to think I'm panicking about every little ache and pain. However, I am a nurse, and often we see the glass always half empty. Thanks!

Jenn

It is so exciting to see our membership hit the record 390 mark!

and I know there are many lurkers out there--hello to you too!

Welcome to the forum! We haven't been able to acknowledge all of you as yet, given the busy season, but please do jump in and post away as we love to hear from everyone!

Hi, Junie. Happy New Year.

I won't go into my ordeal with this less than friendly ailment but will answer a question that you asked since I'm in a similar boat as you. However, my diagnosis took years to make and many doctors dismissed it. After the correct diagnosis was made last July (first symptoms of swallowing difficulty manifested about 15 years ago), I was given 5 bottles of liquid clear gold (IVIG therapy) and started on Cellcept @ 1000 mg/day + 3 to 4, 60 mg tabs of Mestinon. I'm now on 2000 mg/day of Cellcept and same dosage of Mestinon.

You asked how long it takes the meds to kick in: Well, it depends upon each person but my Neurologist told me it takes quite awhile. My double vision is well under control now but I have swallowing difficulties, especially at night; speech is nasal sounding; muscle weakness, especially in the shoulders and neck; and a lot of fatigue especially climbing stairs. I've also found that stress gets me hot and when that happens, the MG symptoms worsen. As a result, I'm much less involved in activities that I used to engage in frequently such as political debates, etc. I just avoid anything that causes stress.

I'm also a Type II insulin-dependent diabetic and that complicates all kinds of issues. Follow with your Neurologist frequently and keep a diary of your issues to discuss with him/her.

Good luck, Junie.

Hello to all, I've recently been diagnosed with MG, 8th November, and I find it very hard to deal with sometimes. I'm lucky to have a fantastic partner who practically does everything for me however, my mother and brother particularly my brother, hardly call and ask how i am, my brother has seen me 3 times since the symptoms started in May, ho hum. I had a fall out with mum and although we made up i can't handle her attitude and this condition anymore, i'm trying to find out as much as i can about mg to see what i want to happen next. I'm so unsure of whether i want to try steroids etc as my partner and i are hoping to start ivf when i'm fixed so i don't want to damage my body and lose the chance of a family. Sorry its so long but this seems a great place to vent some things i can't to friends and family,

Welcome, madeofstars! You will find many good shoulders to lean on here that know very well what you are going through! I'm sorry your family isn't being supportive. Try not to let that stress you out too much since stress is our enemy. Glad you have a good partner to help! It took landing in the hospital in a crisis to get my parents onboard with my life with MG. I hope yours doesn't have to be so drastic!!