I would love to compare notes with others diagnosed MG to compare notes.
I've been told by 3 neuros that I don't "present" in the typical way, but the treatments (Mestinon, Prednisone & Thymectomy) help. I guess I'd be classed as general MG. My eyes and chewing/swallowing seem to be last to go weak usually. I was in remission- no meds needed - for one year but am experiencing a flare that seems to have followed a procedure to coil an unruptured brain aneurysm. Sure could use your input to decide how to deal with my docs.

Becky

Hi Becky,

Do you know how you don't present in the typical way??

Are you on Mestinon and Pred at the moment?

I've had mg for 6 years have had a thymectomy, and am on Cellcept Mestinon Pred, I still have flare ups, and deal with all the problems with the medications I'm on.

What sort of advice do you need about dealing with your doctors, are they neuros or others as well??

Hi Red Tail - thanks for responding even with all you have going on down under! Hope you're safe and this isn't affecting you too much.

My symptoms may be combining with problems from a spinal cord compression I had some years ago due to a car accident and surgeries on my neck, but I'll just tell you the same things I tell the neuros and let me know what you think.

I was in remission apparently for one year, because I had been able to get back to working full time at my job and even some time on my husbands company. Some of the symptoms listed are from before I went into remission from the thymectomy because I haven't yet gotten as bad as then.

My legs were really the first thing I felt as far as weakness goes. I just can't pick my feet up to walk. Coffee cups, etc. feel heavy, but they say my exams doesn't show a lot of weakness in my arms and my husband says my arms have always seemed strong when he is helping me walk. When pushing on my knees and having me lift my bent leg, they don't detect a lot of weakness, but when dx'd my legs were straight and they pushed on the ankle area I couldn't lift at all. Double vision only kicks in after I push too hard and I only really notice it on close up items - if I focus on something further away my eyes don't feel so weak and I don't notice double vision. I have never really shown the single eyelid droop except years ago before I had any other problems, and I just thought it was weird and didn't worry about it. The muscles that do get involved (legs, back, neck and later arms to a degree) feel stressed out like when you have excercised way too hard. They tell me that there should be no sensation with MG, so that feeling I'm describing is one thing that seems to baffle them. One of my first warning signs seems to be a fairly severe aching/burning pain in the soles of my feet, and then in the palms of my hands. That foot pain seems to build up for days or weeks before the weakness hits and the palm of the hands seem to kick in after I have a lot of leg problems (I wonder if I'm stressing muscles that aren't affected to compensate?).
I am unable to rise from a chair without using my arms (Mestinon always helps this).
I tend to "push" myself along with the help of furniture, doorways, walls, etc. when my legs are almost their worst.
I have balance issues sporadically. And occassionally I get a swimming head.
At times, just talking too much (presenting a meeting or visiting with freinds)makes me weak.
Eventually, I end up on a chair breathing shallow and basically unable to move for a while (at the worst times, unable to open my eyes or speak) and wondering how on earth I could still be alive and be that weak.
I have noticed that if I stand or sit too long without my head resting on something I get an ache in my mid thoracic back or in my neck, then I start to become unable to hold myself erect and have to support my head with my hands when sitting.
I am antibody negative, and my last RNS (done on one muscle in my forearm) showed virtually no decrement. That was on Thursday after not working or leaving my recliner from Weds. noon until I got ready for my late afternoon appt. I'm getting really tired now, so will have to stop but that's the main gist of things.

One thing I want to point you and others to is a free online short book written by a Myasthenic that was so interesting to me. I found it when looking for chat rooms, but you can go to it online. Sorry, this site won't let me post the link, but do the 3 w's thing, beyond the limits -with no spaces- and it's a .net site. You can download or print it for free or just read it online. Please check it out and let me know if his theories/thoughts hit a chord to you too.
Thanks for the patience in this long drawn out text!
Becky.

Hi Becky,
Welcome to the site! I hope you are finding someof the answers you are looking for.

I'm a pretty standard generalised Myaesthenic - I started with double vision and ptosis, speech problems, then massive problems with my legs, arms and core strength. Luckily I've had very few problems with my breathing and have never had a crisis which resulted in ICU. I did want to say taht some of your comments really ring true with me though - the not being able to raise yourself out of a chair. And using your arms to help support you walking, even balance (although with me it was not so much balance from head issues, but because my legs were unable to steady me so I felt unbalanced). Although I don't feel any burning or any pain with my weakness I do feel like my muscles are strained - like the shaky feeling you get from a major workout - but I get it doing the most normal of activities - e.g. washing my hair.

I've not had a thymectomy ( I was told that because everything looked normal with my CAt Scan there was no need for one) although I've been trying for years now to be re-scanned or just to have the procedure done. If it's my only chance at remission, then I want it done! However, my neuros disagree and I guess they know best! I take mestinon every 3 hours like clockwork, 150 mg of azathioprine daily, 40 mg of pred every second day and a whole range of other meds to deal with side effects of these wonderful pills! I've had IVIG once but it didn't agree with me - no headaches or sickness, but i was so weak after that I was bed-ridden! Kind of the opposite effect for whatever reason! Thankfully for the moment things seem to be okay. I'm still weak at times but able to work full-time as a teacher and lead a "normal" life.

Hope some of this info helps you out! Take care of yourself!
~Kathy

Hello again Becky! I too have days when I have problems lifting my legs to walk - a scary feeling - but they are getting fewer and farther between.......

You know you are weak. I just don't understand why the so called specialists don't understand that! It really makes me angry! Plus, your mestinon and steroids help, so what is the problem?

Geanted, I do not have foot pain, but I do start to shake after a while when I am doing something physical - such as driving, walking, etc, but I do have pain in my back. I read something somewhere regarding MG patients and pain - apparently what we have been saying all along is true - we do feel pain. They can't explain it, but we do! Who knew the patient was right?

It sounds like this MG has really given you a terrible time. I am so sorry to hear that! THank God your aneurysm was found! I believe in miracles and that really sounds like one!

Can't wait to hear from you!

ERin

Thanks for the info. They can really get you second guessing yourself and wondering if you ARE crazy - as my first neuro, the jerk, told me I was. Kathy, about the thymectomy - they did it on me because there was some residual thymus tissue. Apparently there shouldn't have been at the age I was dx'd. I didn't have a thymoma or anything, and it's not a guaranteed thing that you'll go into remission in 3 to 5 yrs. One thing I have learned about the Neuro's after having seen six altogether, is that while any of them can dx MG, only some actually specialize in treating MG.
Glad you're able to carry on activies now, and wish you the best with your treatments.
Keep positive.
Becky