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• symptoms of progression
• Posted: 2007-11-11 14:15:59 By russ r
• All
  the internet shows before and after effects of macular degeneration, but none of the interim steps. I'm sure there are phases, before the dull black or gray spot appears. Anyone been explained the indicators of progression, other than with the Amsler grid? EG, what phase is central vision/acuity change, is there a phase where the central vision has movements such as reflecting of light and altered views, darkening spot in the center, or? Might help for those of us in various stages to have a comprehensive list to follow. Comments would be appreciated. thanks. Russ R.

• Re: symptoms of progression
• Posted: 2007-12-03 16:42:20 By Elizabeth K
• I'd sure be interested in the answer to this question too. Thanks.

• Re: Re: symptoms of progression
• Posted: 2007-12-03 17:15:12 By russ r
• Elizabeth K
  Thus far, no answers to my query. Must be a lot of doctors on this web site!! Just kidding, tho I must say my question went nowhere with the doctors I've seen. They just don't want to commit to such an answer I guess. That's why I raised the question to the forum to gain personal experiences. My post has been up for a while before your comment. Those in the forum, please give your experiences to help others who may not know where they stand. There is an MD who also makes occasional comments, from FFB. Maybe we can get his comments too! thanks.
  Russ R.

• Re: Re: Re: symptoms of progression
• Posted: 2007-12-03 18:10:40 By Elizabeth K
• Russ, part of the problem with this site seems to be the way it is set up. In most forums,
  the user can view the message to which they are replying at the same time they make a reply. Not the case here. I first printed your reponse so I could refer to it.
  
  The other problem may be that the people you and I want to talk to can't see the computer screen any more.
  
  As for "my story," about seven years ago, I noticed a break in the lines on my computer. At no other time did I experience this ... only on the computer, and it did not happen all the time. I had no idea what the problem was, so I just went on with life.
  
  About two years later, I went to my optometrist for new glasses. He said that I should have my cholestrol checked. He handed me an Amsler Grid and told me to take it home and look at it and if I saw crooked lines, to call him. I took the grid home and I saw the same type of break in the lines that I saw on my computer. There was just one "blip." I called my optometrist and he suggested I go to a retinologist (whose office just happened to be next door to him) for a check-up. No mention by the optometrist of the words macular degeneration. I then Googled "Amsler Grid" and heard the words "macular degeneration" for the first time in my life! I was shocked! My first thought was, "What else hasn't mother told me about old age." I spent at least a week on the internet researching macular degeneration and cried a lot.
  
  I made the appointment with the retinologist. His waiting room was packed. I waited two hours to see him with an appointment!
  
  The retinologist confirmed that I have dry macular degeneration. He pretty much just wanted to pat me on the head and send me home. However, I persisted and asked him, "On a scale of one to 100, how bad is this?" He really hesitated, and then said, "10." He told me to just keep going for my yearly checkup with my optometrist and if anything changed to call for an appointment. He told me to take Ocuvite. I advised him that Ocuvite had betacarotene in it and that was not good for smokers. He looked puzzled and said that he didn't know why that would bother me. Humpf, I thought, I know more about this than he does! I did find Visivite's AREDS for smokers and have been taking it ever since. I have no idea if they are helping or not.
  
  In the meantime, my husband and I moved to the High Desert (Mohave) which is in nowhere land. The nearest town doesn't even have a donut shop no less an opthamologist.
  
  So, three years passed and we built a house. My eyes seemed to stabilize since I was first diagnosed until a couple of months ago. I began noticing LARGE crooked lines in roofs and fences. So, I returned to my optometrist who is now a day's trip from my new location and told him what was going on and he again referred me back to the retinologist.
  
  At this point in time, I decided that I best find a retinologist closer to home. I remembered that I took my son(4 years old at the time) to an opthamologist through the Doheney Eye Institute, who performed a corrective surgery for alternating estropia on him resulting in 20/20 eyesight. I discovered there was a Doheney Eye Institute office in Palm Springs. So ... off I went to see them.
  
  During my initial visit with Doheney's opthamologist (Harvard Grad), he informed me that my macular degeneration was still dry and that I have cataracts in both eyes. Shoot! What more can go wrong with these eyes! A friend of mine reminded me that I could get glaucoma too! No thanks!
  
  Anyways ... the Doheney opthamologist now has me on six-month recalls. They also invited me to a presentation regarding eye research updates, which we went to yesterday. Well, there still is no cure for dry macular degeneration and in talking to some of the patients, the new breakthroughs for wet MD such as Lucentia didn't work for them.
  
  I guess I had my hopes up too high for Lucentia. Further, most of the websites I looked at regarding Lucentia didn't identify it as being only for wet MD.
  
  Let's face the facts: There is no cure for dry MD and the AREDS formula, in my opinion, is a pacifier until research has a real breakthrough, which I don't really have any hope will happen in my lifetime. All the research seems to be for wet MD, and as you know 90% of the people have dry MD. I was hopeful that stem cell research would produce something for us, but that doesn't seem to be feasible either as the trials are going to take five years for Phase I ... then another five years for Phase II ... and another five years for Phase III. Oh, and there's also the Bush factor.
  
  As you can probably tell, I have lost all hope. I have good days and bad days, like anything else. There's a lot of "off beat" remedies on the net, and I won't even waste my time with those.
  
  Like you, I'd like to know what is ahead.
  

• Re: Re: Re: Re: symptoms of progression
• Posted: 2007-12-03 18:36:16 By russ r
• Elizabeth K
  If you wish to reach me direct, my email address is Rrusrjr2@aol.com. Might be easier that wasy for me to share my experiences with yo and not occupy the forum. My exoeriences have been pretty complicated, with lots of misdirection by the medical community. looking forward to an email (if you prefer that path). best regards, Russ R.

• Re: Re: Re: Re: Re: symptoms of progression
• Posted: 2007-12-03 18:41:55 By Elizabeth K
• I prefer to use the board. Thanks.

• Re: Re: Re: Re: Re: Re: symptoms of progression
• Posted: 2007-12-03 19:33:17 By russ r
• Elizabeth K.
  My problems started in early 2005. First diagnosed as a cataract in one eye. No problem, according to the optometrist. In Dec.05, went to opthalmologist to arrange for correction of cataract. Pressures found high, @30. Gave me drops told me to use them and come back in a month, and the cataract would be removed. I decided to get another opinion because of the surprising high pressures. Next MD said I might have glaucoma. He then sent me to a retina guy who said also have dry ARMD, 1 on a scale of 1-10. Eey drops for glaucoma begun. Pressures would not drop below low 20's. In May, 06, had lazer operation to reduce pressures because drops didn't work. 27% optic nerve damage estimated. Started to see spinning objects in left eye. MD said no problem. Condition worsened, retina MD said I have vitreous detachments, no problem. Spring of 07 to date, vitreous detachments resulted in heavy floaters, grease like spots, and spinning objects seen even when eyes closed. Now have movements allover the left eye, 24/7. Nothng can be done, per several retina experts. Been everywhere in the U.S. seeking solutions, with none found. Used MCS (microcurrent stimulatin) and this caused more disruption of the vitreous. Stopped that. Tried acupuncture for relief, not effective. Retina MD's just say 'cope'. I am a scientist by profession and have researched every corner of the globe for new procedures, etc. Big issue is that dry ARMD, glaucoma, vitreous detachments, all are small population numbers, therefore very little research dollars being spent by pharmaceutical companies or equipment makers to FDA approval (as you noted, it takes FOREVER to get FDA approvals). Even Oprah and Dr. Oz were asked to help!-no response. my vision in my bad eye is 20/30 corrected, but the debris and wave forms are very distracting. Other eye has no debris, is 20/20 and I am trying to protect it, thru some other research findings. That's my story. I will not stop until I have exhausted every possible direction, and I still have many to follow. I do not trust or believe many MD's and other medical people right now. We must do our own cahsing to help ourselves. Russ R.