Total hearing loss, failed CI, now losing my vision

I would appreciate your prayers as I have had eye inflammation problems for several years with no dx, and have total hearing loss from MM since 2005. My CI was unsuccessful in 2006 due to fibrous scar tissue in the cochlea.

In July I had a "stroke" inside my right eye. An artery hemmorhaged and caused damage to the optic nerve, leaving me with vision loss. I can still see out of that eye - it just has lots of vacant areas so that I am unable to read or drive or see enough (with that eye only - the other eye is still ok). The problem is that they think they eye and ear problems may be related through some sort of artery inflammation that is very rare (google Cogan's Syndrome) which has the exact symptoms of Menieres in the ear, and inflammation in the eye and other arteries in the body. My blood work shows I am above high risk for stroke or heart attack or other organ involvement. The only way to determine what is going on is to biopsy every organ (including the brain - I did have a biopsy of the temporal artery in my face for head artery involvement and that was negative) OR to go on prednisone and immune suppressants to try to save my eye(s) and more.

Problem is of course that these drugs also have bad side affects. Choose your poison! Will try to keep you posted. If anyone else has eye inflammation along with their MM, I suggest they have a CRP and Sed Rate blood test, because it might change the way you treat your MM and also save your vision.

 

:-* :-* :-*

 

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Headnoise, you have my prayers.

 

Prayers for you.

 

I am really sorry Sherry and truly hope you get some good news soon
Have you been on prednisone much in the past? Some people tolerate it much better than others. And do you know what other immunosuppressants they are considering? I know people who have been on them for years for arthritis or some other autoimmune problem and many manage OK, especially if the alternative is for the other symptoms to get worse.
Will be thinking of you, mystery molar lady--please keep us updated about your progress.
Again, sorry for your misfortune.

 

Prayers said

 

Headnoise I will keep you in my prayers.

 

Sherry ~ I am so sorry that there is not good news.

Prayers, hugs, caring thoughts with you dear one.

Ruth ♥♥

 

Jim, yes I've done the prednisone routine numerous times to "preserve my hearing (& we know how well THAT worked) with the full package of side affects that come with 60 mg including hallucinations this time! Nothing like not hearing what is real, hearing what is not real (tinnitus), not seeing what is real, and seeing what is not real, to confuse a gal! Talk about ditzy blonde!

The immune suppresants are the same used for transplant recipients to prevent rejection. I've been on methotrexate before which is prob what you are mentioning as an arthritis treatment and those were not bad (in terms of daily side affects , or even long term). This is Cellcept (can't remember tech name) & it changes DNA to block body's immune system response. Serious stuff.

I go monthly for blood tests to check for cancer and organ failure through end of Dec at which point I guess they will re-evaluate & decide how to continue. I am of the understanding that it is possible a treatment plan of 1-3 years might bring it under control, or maybe I could go in remission, or maybe this is life-long progressive degenerative.....

Looking for better days ahead. God is in control and He will take care of me whatever happens, good or bad.

 

Given that you lost so much hearing so long ago, I figured you had been through all that, but I wanted to at least ask. Yes, the methotrexate isn't a heavy duty one (I did it and big doses of prednisone in '03), and that seems to be the one that causes fewest serious problems.

I hope whatever course of action you and the docs take brings you some relief. I also hope you are able to make the St. Louis gathering.

Take care and keep us posted--many are thinking of you.

 

Definitely sending out prayers for you Sherry
Loretta

 

Sherry, my prayers are with you. When I first saw Dr. Hain, he thought I might have Cogan's Disease. Along with being an Otoneurologist, he is also an Ophthalmologist. However, he did not have the equipmentin his office to test for this eye disease so he sent me to another specialist. Thank goodness, I did not have Cogan's Disease.

A friend of mine had a CI and it failed. He developed a severe infection and it had to be removed.

 

Sherry, you know you have mine.

 

You are in my Prayers Sherry, just keep on being You, and let God worry about the rest!!

 

Thinking about you Sherry! Sending lots of prayers and good thoughts!

Christina

 

Headnoise, you are in my thoughts and prayers. Love, Sally

 

Lots of prayers coming your way.

 

love and prayers and hugs

 

Prayers to you S!