I stumbled upon MG as I was reading up on dysautonomia (which I was diagnosed with about six months ago). I do not know much about MG but I do know that I will be calling my doctor first thing in the morning to ask for the testing for it. The more I read, the more I can relate to a lot of the symptoms it causes.

I would like to share my story with the hopes of getting some feedback from this group. I know that you are all dealing with your own problems so I will try to keep it as short as possible.

I had a kidney transplant 8 1/2 years ago which went very well but it was also the begining of my symptoms. It started with tingling in both of my feet, which can be caused by the Prograf that I am on. From there I had muscle weakness/pain very intermittently. I did quite well for the next five years or so after the transplant. Then I started having terrible headaches, neck pain, shoulder pain and a long list of other things. In 2006 I was diagnosed with Chiari Malformation and shortly thereafter had the decompression surgery to fix it. The surgery itself went well, but I have not been the same since. Like I said I was diagnosed with dysautonomia but my neurologist does not feel that this diagnosis would explain all of the symptoms I am having. He feels that there is something else going on as well. I also tested positive for Lyme disease. The doctor strongly feels that I contracted this disease within the last 6-12 months so again, he does not feel that Lyme is causing all of my symptoms, it must be something else. By the way, he did treat me with 30 days of antibiotics and tells me this is enough to cure the Lyme disease. He basically told me it is now a dead issue.

My primary care physician is at a loss. He wants to send me to Mayo Clinic in Rochester to get to the bottom of this nightmare. I want to list my symptoms to see what you guys think.
-Pain and burning in my head, face and shoulder blades.
-Extreme muscle fatigue in my mouth and face while chewing food and
talking.
-Sometimes I feel like there is a string attached to the center of the tip of
my tongue and the string is being gently pulled back (toward the back of my
throat, strange!) When this is happening and I happen to be talking, I can
not properly pronounce my words, especially S's and T's. It's very
embarrassing.
-Constricting sensation in the front of my neck (throat) and below my ears.
-Sometimes when I am eating, I put the food in my mouth-chew-attempt to swallow-and the food just sits there. I have to fight with myself to achieve
the swallow. At that point I feel as if I am going to choke. Scary!
-I have difficulty swallowing liquids. When I am finally able to swallow, it
actually burns as it goes down and actually feel as if I am swallowing
glass.
-Laughing causes pain and weakness in my face and throat.
-Arm pain and weakness. The pain is mainly in my forearm and almost feels
like growing pains.
-Hand pain and weakness. When my hands are really bad I notice the veins in
them are bulging. If I hold something such as a plate filled with food with
just one hand it causes the hand to shake like a leaf.
-Pain and weakness in my legs and feet. The weakness causes me to stop
what I am doing immediately and get off of my feet. It is an overwhelming
weakness. The pain, again, feels like growing pains. It is an intense, horrible
pain. The pain is provoked by walking around for extened periods of time.
I always pay for over-doing-it.
-Shortness of breath. This can happen when I am active, during a
conversation or when I am just laying around.
-My eyes do not droop and I do not have double vision. I find that I have
problems when I am driving. I have a hard time focusing and feel that I am
in a constant stare. The staring thing can happen at any time, but is very
frequent.
-I have constant muscle "knocking". That is what it feels like, knocking. It
happens to every muscle, big and small, all over my body.
-I am so exhausted at all times. It does not go away. It is all over fatigue. I
just don't have energy. It feels like the energy was literally sucked right out
me.
-Stomach upset, pain and bloating.
-I have had a positive ANA and RA. Rheumatologist feels everything is fine.

I am 29 years old and have two young children. I really need to get better so I can function normally again. I cannot participate in the things I used to because of this illness.

Can MG cause such intense pain? I know that I am not consulting with doctors here, but having gone throught, you all are probably more knowlegable than some doctors. Any feedback would be greatly appreciated.

Thank-you so much,
Mollie

That doesn't really sound like MG. The pain and spasticity and "pulling" sensations are not MG. Have you investigated MS?

Wow! I was just blown away when I read your blog! You've had an incredibly tough time for such a young person. I am 34 and was recently diagnosed with MG. My MG symptoms were verbatim per Wikipedia: drooping eyelids, muscle weakness, problems swallowing, eating, breathing, etc. ....I have never experienced pain though, just extreme muscle weakness and problems seeing (I call it "wonky eye" cuz' my eyes were rolling around in my head and I looked stoned). I don't know what else to tell you except that you've found the right place for support: everyone here has been AMAZING! The support you will find here will blow you away! Good luck and keep everyone updated! Take care!

So MG CANNOT cause pain or does not USUALLY cause pain. Pain is definitely one of my main symptoms so if MG cannot cause pain I guess I'm in the wrong place here. I guess I am just so desperate to find a diagnosis that when I realized I could relate to a lot of the symptoms I read for MG I though "Ah ha, this might be it!". And trust me over the last year or so I have had a lot of Ah ha! moments. As I'm sure most of you know, symptoms can overlap from one disease to another. I am beginning to think I will never get properly diagnosed and have to live like this forever. Ok, enough of the self pity.

Does anyone else have an opinion on this, do you think MG or something like it (if there are any other diseases that are similar to it) could be a possibility based on my symptoms.

Thank-you for taking the time to read through my loooonnnnngggggg posts!

Nope, MG will not cause pain, only EXTREME muscle weakness - to the point of not being able to breathe.......SCARY stuff. The other stuff you were describing - problems swallowing are also par for the course with mg, but not the burning sensation while swallowing. I'm sorry I can't give you more info....Hang in there! Erin

Please read the useful links for Myasthenia above. There is one about pain in M.G.
Not saying but if you are +ANA and RF, sounds like you need a new rheum. Maybe going to Mayo would be a good thing. Best wishes.

Thank-you all for the info!

As far as the Mayo clinic visit, they tell me that due to all of my symptoms I would have to start out with an Internist and as of right now their Internists are so backed up that they are not even scheduling new appointments. I have seen so many specialists in the past few years, some have found and treated things for me, but here I sit with these symptoms that just will not allow me to live a normal life. I almost feel like it will come down to me getting lucky and finding the right doctor at the right time before I will find out what is happening to my body. It just blows my mind that we can see so many doctors and not one of them can figure this thing out. I know I am not alone on this subject, I'm sure many of you did a lot of suffering before you were diagnosed. My heart goes out to you all. I hope that you all can find the right treatment that will allow you to live the life you desire to live.
Take care.

BTW, Do you all see neurologists for MG or is there another doctor that treats this disease as well.

It's me again!

Gumby,
Thanks for bringing that article to my attention. I agree with you on the idea of getting a new rheumy. I am asking around to see if anyone I know can recommend a good one in my area. I think it's time to get the opinion of a new doctor.

So I guess I am left with the same question...Can MG cause pain?? I would be very interested to hear from more of you and get your opinions and expertise. I am not quite ready to close the door completely on MG.
Thanks,
Molly

The only pain MG will cause is if there is muscle strain from weak muscles trying to work--usually in the back of the neck. Pain, in an of itself, is NOT synonymous with MG.

I was on the MS site and one of the members described a "burning" sensation while swallowing liquid...have you thought about MS? Also, for some reason autoimmune problems sometimes run in 3's. You may have MG, but it sounds like you may also have something in addition to MG. I know you must be frustrated, but hang in there and let us all know how you are! Take good car4e of yourself!
Erin