I was dx with External Ophthalmoplegia. Does anyone have information or an experience they would like to share? I am scared and need your words of encouragement.



Thank you,

Kim

Someone? Can anyone help?

In case you didn't already know, this condition is caused by a mutation in the mtDNA. THere is no known treatment or cure that I am aware of. I don't believe that it's life threatening. It can be evidence of some other underlying neurological disorder as well, like MS. Either way, if you have not already been evaluated by a neuro-ophthalmologist, you need to do so at your earliest convience. Good luck!

Thank you Greenman,

I have been up and down and the info. that you gave me is the same info I have been reading. I have a question for you.......My MRI can out negative, but if I am experiencing this ocular problem, shouldnt the MRI show something? or is that not true in every case?

Thank you,
Kim

Dr Sohan Hayreh will be at the Univ of Iowa in May. He is world reknowned retina authority and has the bedside manner of a loving, caring, grandfather. He's an eye expert and their maladies. This guy may be helpful to you and very interested in your case or the least may get you in touch with who can help you. Lots of Hugs!

I am in New Mexico and can not make it to Iowa. I am hoping to get to the Uni. of Denver in about 3 months. I have a Retinal Specialist now, she is great, I wish she was my PCP. I had Retinal Holes (left) and some lattice degeneration (right) and my RX for glasses has changed 3 times in year and half (I stopped wearingthem). Would my ocular problem be better treated or DX by a Retinal Specialist or is the Neuro-Optho the one for the job?

How are you Sunflower? I see your posts alot and greatly appreicate your responses to my madness.

Wishing you Health, Happiness, and Wisdom
Kim

In case you didn't already know, this condition is caused by a mutation in the mtDNA.


I talked to my PCP and he said that there is no way it is MD. Is the mutation in the mtDNA, Muscular Dystrophy? Based on your knowlegde is that all it could be? I mean they say I don't have MS, so what the heck is wrong with me?

I see my neuro-ophthalmologist on May 12, but I don't expect anything from him. I always leave his office confused and frustrated.


Wishing you Health, Happiness, and Wisdom
Kim

I am in New Mexico and can not make it to Iowa. I am hoping to get to the Uni. of Denver in about 3 months. I have a Retinal Specialist now, she is great, I wish she was my PCP. I had Retinal Holes (left) and some lattice degeneration (right) and my RX for glasses has changed 3 times in year and half (I stopped wearingthem). Would my ocular problem be better treated or DX by a Retinal Specialist or is the Neuro-Optho the one for the job?

How are you Sunflower? I see your posts alot and greatly appreicate your responses to my madness.

Wishing you Health, Happiness, and Wisdom
Kim

Well, it was just a thought that you could possibly contact him evenby email asking what he knows of your condition and/or who the expert is. I received an article about Colorado with regards to new eye procedures. It was vascular in nature so I'm excited for you! Maybe they have info about it. I'm glad you have a caring, sensitive retina doctor. For your condition, the neuro-opthalmologist is the specialty you need. I hope he is more compliant with giving you answers this next visit. I'll keep good thoughts and hopes for you. I'm hanging in there. Thanks for your good wishes! I appreciate them and send you the same! :)