[busybusy]

I have been diagnosed with MG for 2 to 3 years. I changed my eating habits and for many months felt better and did not take any generic Mestinon. lately, I have fell off the wagon and been run over many times and have not been able to get back. I know what I must do but My question. Do any of you have any of these symptoms. The specialist says they are not part of this. Using my voice a lot, I get hoarse to were I hate to talk it sounds so bad. I have got were I have to keep blinking to focus because of my eyes. Can't even see road signs at night because they are blurred. Eye doctor says I have young cataracts. My legs hurt really bad and if I stand on them long, I can barely stand it they hurt so bad. I got where I can hardly remember things. I sometimes can't even carry on a conversation because I can't remember. My thoughts are not clear. My left jaw tends to feel like it is pulling, comes randomly. Have not been on my medicine because of severe stomach pains. Came off to see if this was a side effect. Again, my question. Does anyone have these and does your neuro just shake if off.

[schavarria]

The hoarse voice and leg pain make me think of B12 shots that made my hoarse voice and crampy legs get better. My eye wonkiness improved too. Maybe a deficiency in that area? The other things don't sound familiar to my MG. Best wishes.

[southblues]

You sound exactly like me and I am much better if I take cellcept. I took mestinon for 2 years and I totally hate it. It helps. It also causes gut cramps and urinary system cramps.

My voice gets hoarse. My doctor says it is due to fatigue of my muscles that produce the sound.

My legs hurt. My doctor said that it is because the muscles that do work have to work overtime so that I can walk since other muscles malfunction.

When my eyes are tired, my eyelids droop so bad that I can't see out. Before they close totally, my vision is blurred.

I went through a stage of having a really bad memory issue. It is much better now. My neurologist thinks that I was not getting enough oxygen when I slept due to untreated myasthenia gravis.

Another weird symptom that a lot of us seem to have is that my ears will seem all stopped up when I am tired. It drives me crazy.

I also talk like I am drunk. Slurred speech. Weird sounds. People at work have accused me of being a major pot head. I am not.

I suspect that you will figure out that all your issues are from the MG.

Mestinon is only a symptomatic relief. It is somewhat like taking aspirin for the pain from a brain tumor. Sure it helps the symptoms......
Lowering the antibody level does more good though.

[bny806]

I don't have a firm diagnosis,(MG and LEMS top of the list though) but get IVIG for my issues and have several like you as well

I for sure have the eye focusing issue.. when I am needing IVIG it gets pretty awful... before IVIG I would get hoarse easily as well

Southblues- YES I have the ear stopped up thing when I'm having an exacerbation as well.. can't stand it!!!

I get leg pain as well - mostly in the buttocks.. its quite uncomfortable..

[busybusy]

Thank everyone who responded. I have made an appointment with my neuro and I will express my concerns with him. I did not know if these symptoms was due to some other disease and needed to seek other roads, but I can now see that that won't be necessary. Sometimes you feel like you are going crazy and dreaming these symptoms up because you can't convince others. They think because you look good on the outside, you are a hypercondreiac. sorry about the spelling. I am sure you understand my meaning. Thanks again for assuring my sanity.

[motorcycle diva]

Originally Posted by busybusy

Thank everyone who responded. I have made an appointment with my neuro and I will express my concerns with him. I did not know if these symptoms was due to some other disease and needed to seek other roads, but I can now see that that won't be necessary. Sometimes you feel like you are going crazy and dreaming these symptoms up because you can't convince others. They think because you look good on the outside, you are a hypercondreiac. sorry about the spelling. I am sure you understand my meaning. Thanks again for assuring my sanity.

Please remember not all Neurologists have a lot of experience with MG. This forum has been a God send for me as well. I thought I was losing it because my Neurologist kept telling me "that's not part of MG, it's something else" but no help finding the "something else" until I came here. Keep in touch with other MG patients, it is so helpful.

[motorcycle diva]

Originally Posted by busybusy

Thank everyone who responded. I have made an appointment with my neuro and I will express my concerns with him. I did not know if these symptoms was due to some other disease and needed to seek other roads, but I can now see that that won't be necessary. Sometimes you feel like you are going crazy and dreaming these symptoms up because you can't convince others. They think because you look good on the outside, you are a hypercondreiac. sorry about the spelling. I am sure you Iunderstand my meaning. Thanks again for assuring my sanity.

I have learned to keep a notebook of symptoms and when I experienced them. Take the notes with you to your neuro; our memory will not allow us to recall them and our speech makes it hard to express everything. I hand him a list of issues and we start working. Your are not alone or insane! lol I noticed your user name is "busybusy", that may have a lot to do with your symptoms. I had to slow down so much and take time for short rests, my family and friends just can't believe it is me. Take care of yourself.