Re: drooping eyelids

[Guest guest]

Please if anyone developes a drooping eyelid or double vision, please write me right away and will try to help more.

Cath, I have one drooping eyelid, my right eye. I thought it was just old age. lOL I have no double vision, I have almost no vision at all without glasses. I have developed steroid induced cataracts. Have really dry eyes now and can't remember what drops you told me to get. I know it was a long time ago, but if you have a good one, I would appreciate the name. I have been on Refresh eyes and they don't seem to be working as well right now.

Thanks for the prayers. I had to have my aortic valve and root replaced in July because of Rp. I am doing really well now and am recovering not as fast as I would like but just fine for the doctors. LOL Having bladder problems or something so they are going to scope the bladder on Thurs. I'm possitive that when all of this is over I will be just fine and 100%.

hugs

[Guest guest]

I also can relate with you as far as valve surgery. I had my aeortic valve and part of my aeorta replaced due to RP in Nov. 2000. I chose to get the St. Jude valve. Taking Warafin now for the rest of my life....I am sure the same with you:)

, I also have the St Jude valve and the dacron root. They called it a composite graft. How are you doing 2 years later?? I also am on Warafin 4mg a day. I'm still in the process of getting it right. LOL Guess it takes awhile. Did you have a long time with the healing of the sternum due to the pred? Seems like it is just taking me forever. LOL I know I'm impatient. Any advise would be appreciated. I'm new at this, had it done the end of July. You can always post me privately if you want.

Did your dr tell you that the valve was damaged completely different due to RP? Mine did. I am trying to get him to write a paper on it for our Foundation.

I had mine done at Stanford. I know you live close to me, where did you have yours done?

I'm so full of questions.. You are the only one I know with RP that has had heart involvement. Please fill me in..

So glad you are in the group. You can probably enlighten us.

Can't wait to hear from you.

hugs

[Guest guest]

the only problem i have been having with my eyes are blurriness at times and very dry at times. then they get all puffy, red and hurt. especially my left one barbara Re: drooping eyelids Please if anyone developes a drooping eyelid or double vision, please write me right away and will try to help more.Cath, I have one drooping eyelid, my right eye. I thought it was just old age. lOL I have no double vision, I have almost no vision at all without glasses. I have developed steroid induced cataracts. Have really dry eyes now and can't remember what drops you told me to get. I know it was a long time ago, but if you have a good one, I would appreciate the name. I have been on Refresh eyes and they don't seem to be working as well right now. Thanks for the prayers. I had to have my aortic valve and root replaced in July because of Rp. I am doing really well now and am recovering not as fast as I would like but just fine for the doctors. LOL Having bladder problems or something so they are going to scope the bladder on Thurs. I'm possitive that when all of this is over I will be just fine and 100%. hugs DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Let me know what else you would like to know. Also, I could probably get my reports from Dr. or any info to help with your article.....

, any information you can get about your heart and RP would be extremely helpful. My problem too was a silent one. I had the external signs of RP (ears, nose, ribs) starting in 1998. But in 1993 I was diagnosed with Mitral Valve Prolapse. No big thing and very common they said. In 1995 they found through a routine echo, that I had aortic insuffientcy. My cardiologist didn't know why. He kept a close watch on this and treated me with medication. After being dx with RP, he put the connection together. He still kept a watch on it. Then the murmer started to sound worse then the echo showed and he sent me over to Stanford. I was starting to have syptoms like shortness of breathe even upon sitting. They did a heart catheter and found that indeed my valve was more damaged then is should have been, my heart was enlarged and I had a lot of fluid.

This is what I call silent RP. Most drs think if your ears or nose isn't red, and your sed rate is normal, then you must not be having a flare. My concern is what is happening inside our bodies that we can't see? We were fortunate to have drs that acted and listend to what we were telling them. Just have things checked out.

Yes, I have a breathing thingy here... I have slacked off on using it and will get it out again. I know it is really important. I do have a two story house so I am climbing stairs and going to rehab 3 times a week. I am getting more short of breath now than when I came home. Guess the sternum will just take awhile.

Thank you for all of your information. Maybe together we can get the drs. at Stanford to write us a nice paper on the heart and RP.

Glad to know you are doing so well.

hugs

[Guest guest]

Turns out that I have Myasthenia Gravis and I have not seen it linked with RP anywhere. It is also an autoimmune disease and test results for it were negative for 2 years until just lately. Mestinon is medication that treats this (MG is a neuromucular disease) and it raises my eyelid and increases my upper body strength.

Hi had a VERY droopy eyelid. In fact, it got so bad that it looked like my right eye (bad eye) was closed. An eye doctor went in there and fixed the droop. He specializes in this. Can you please tell me what kind of tests are taken to see if Myasthenia Gravis is present? I am having a cat scan tomorrow because of the left side of my face has the neuralgia really bad. The docs seem to think that Trigeminal Neuralgia and RP are related. I feel like they are missing something as far as another dx. I hope not but I will see after the cat scan.

Hugs, Sharon

[Guest guest]

Hi Cath,

The eye doctor at the Cleveland Clinic blew me off too. My right eyelid droops and I have bulging of the left eye. When I told him about the pain I

get in my right temple his answer was

"people with RP are full of aches and pains." I was so mad I could have punched him.

Sandy

-- drooping eyelids

Hi everyone:

Interesting twist to associated disease with RP. 2 years ago I noticed a sudden droop of my left upper eyelid.

I saw neurophthalmologist and he was more worried about eye bulging in the right eye. Kinda blew off what I was saying ( we know about that!!)

Turns out that I have Myasthenia Gravis and I have not seen it linked with RP anywhere. It is also an autoimmune disease and test results for it were negative for 2 years until just lately. Mestinon is medication that treats this (MG is a neuromucular disease) and it raises my eyelid and increases my upper body strength.

Please if anyone developes a drooping eyelid or double vision, please write me right away and will try to help more.

Just wanted to throw this out for though since those who know me know I just can't keep quiet if I can help someone.

Thanks for letting me post this.

CathDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU