Hi, Borz! From what I understand, after seeing several neurologists myself, almost any kind of neuralgia or neuropathy could cause symptoms like yours. There is even one progressive neuralgia which can be caused by something as simple as a small internal ulcer or sore, which can damage a nerve, especially near major nerve centers. Then the damaged nerve cells send their chemical "danger" signals to adjacent nerve cells, corrupting them as well in a chain reaction which can spread up and down one or both sides of the body. Then the sore heals, and there is nothing left to show what began the process, no matter how hard the docs look. Whatever the problem, I sure hope you find some answers. I understand very well how difficult it is not to have a dx. Seven years and counting...lol. Good luck!

Thanks for the reply. It is very tough thing to have symptoms and have a doc tell u its nothing, as you know very well. I appreciate the advice and i hope everything works out for you.

Borz,
Have they looked at Myasthenia Gravis for you? The drooping eyelid thing is pretty standard. Did it droop when you were at the docs? If not, I encourage you to have a picture taken of you with and without the drooping going on. It's one of those symptoms that likes to hide right when you have an appointment, and what a neuro doesn't see doesn't exist (in their opinions.)!

I would encourage you to visit the MG forum. Several there were diagnosed by an opthalmalogist, preferrably a neuro opthalmalogist. There is a little self test you can do at home even. When your eyelid is drooping, hold some ice (wrapped in a cloth - you don't want to put the ice directly on your skin) on your eye for a few minutes - 10-15 or so. See if the droop gets better. It won't stay good for long, but this can be used just to see. MG is worse with heat. Docs used to (some still do) use this as a diagnostic test for MG!

MG is pretty rare - I have had a terrible time with hospital staff not knowing particulars of the disease. They learn about it in med school, but see it so rarely that it doesn't even come to mind. When I was dx'd I asked a nurse "if you had to have MG or MS, which is better?" She had to go to a med reference book to read up before she could give me the answer! (MG is the better of the 2) My old GP was constantly giving me advice to excercise even after I had my dx - MG is the one disease I know of where exercise is NOT GOOD if you are in a flare! I have changed GP's - I figure if he can't be bothered to study up on his patient's condition to make sure he doesn't give bad advice I don't want to see him.

Anyway, check it out if it hasn't been looked at.

Best of luck to you.

Hi, I came here to find help for my mother and noticed your topic. I use to work for a group of eye surgeons. Did the neurologist test you for Myasthenia Gravis, there are more ways to test for it than blood work or an MRI.

Sorry you are going through this
Callie