Budko
04-29-2004, 12:55 AM
I think I was dx with External Ophthalmoplegia. My Mom says the Doctor never said it but he wrote it down, so what does that mean? Any who, I have been researching and found that External Ophthalmoplegia is associated with MD. I have had more symptoms related to MS than MD, but I am not a doctor so, I have no clue, I am just along for the ride. Here are my Symptoms:
Mostly started in 2002
Droopy Eyelid (left), Double Vision(left)(External Ophthalmoplegia), Ringing, Pain and loss of hearing in left ear, Tingling in left arm, leg, and face, Pain in face (left), eye (left), arm (Left), and leg (left), I have had retinal holes repaired in both eyes, Choke on small things (pills), 4 teeth loose with pain and might I add that all the PAIN IS JUST AWFUL! I feel like the pain in between my meat and bones. I have horrible Headaches that last for weeks. Muscle weakness, left leg drags, arm and hand very weak, I was hospitalized for left side paralysis (2002 dx with hemiplegic migraines), Facial paralysis, drooling, and I am sure some I am forgetting.
I have had every test known. EMG, EP, EEG, MRI, CT scans, Blood tests, Spinal Tap (oh that was fun, anyone that says is does not hurt, is a LIAR!), Tensilan test for MG.
I have been on tons of Meds. From Antidepressents to Antiseizure meds. I am currently on
Synthroid (Graves Disease in 1988, RAI in 1996) (Seeing an Endo reg., he did not suspect thyroid eye disorder)
2400 mg Neurontin (can't live without it)
500 mg Depokote
Predinsone 20 mg daily for 5 days (I have a headache and that is my Maxalt)
Demeral and Darvosets for Pain and as needed
I am seeing a Neuro-Opthomologist for the External Ophthalmoplegia and they say he is the best. My recent MRI was Neg. so I don't know where he will be taking me from here. I am sorry this was so long, so I will finally get to the point.
Does anyone feel (physically) like me? What do you think? Has anyone experienced External Ophthalmoplegia? My rope is getting shorter and I don't know where to turn.
Wishing you a pain free day!
Thank you,
Kim
Mostly started in 2002
Droopy Eyelid (left), Double Vision(left)(External Ophthalmoplegia), Ringing, Pain and loss of hearing in left ear, Tingling in left arm, leg, and face, Pain in face (left), eye (left), arm (Left), and leg (left), I have had retinal holes repaired in both eyes, Choke on small things (pills), 4 teeth loose with pain and might I add that all the PAIN IS JUST AWFUL! I feel like the pain in between my meat and bones. I have horrible Headaches that last for weeks. Muscle weakness, left leg drags, arm and hand very weak, I was hospitalized for left side paralysis (2002 dx with hemiplegic migraines), Facial paralysis, drooling, and I am sure some I am forgetting.
I have had every test known. EMG, EP, EEG, MRI, CT scans, Blood tests, Spinal Tap (oh that was fun, anyone that says is does not hurt, is a LIAR!), Tensilan test for MG.
I have been on tons of Meds. From Antidepressents to Antiseizure meds. I am currently on
Synthroid (Graves Disease in 1988, RAI in 1996) (Seeing an Endo reg., he did not suspect thyroid eye disorder)
2400 mg Neurontin (can't live without it)
500 mg Depokote
Predinsone 20 mg daily for 5 days (I have a headache and that is my Maxalt)
Demeral and Darvosets for Pain and as needed
I am seeing a Neuro-Opthomologist for the External Ophthalmoplegia and they say he is the best. My recent MRI was Neg. so I don't know where he will be taking me from here. I am sorry this was so long, so I will finally get to the point.
Does anyone feel (physically) like me? What do you think? Has anyone experienced External Ophthalmoplegia? My rope is getting shorter and I don't know where to turn.
Wishing you a pain free day!
Thank you,
Kim