Originally Posted by mollybees

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